Saturday, March 7, 2015
Life with FSHD...my story of hope.
I first started noticing muscle weakness in my shoulders when I was 16 or 17 years old. Prior to that I thought I was just a normal teen. However, I never understood why I couldn’t run as fast as the other guys or why I couldn’t do sit-ups or pull-ups. I just assumed I was a weakling and needed to exercise more. I got made fun of because I ran so slow as early as I can remember. The thing about FSHD or fascioscapulohumeral dystrophy, is that it progresses very slowly. You don’t realize you have lost another muscle until you go to do something and realize you can’t do it anymore. Atrophy is a word I'm very familiar with.
Example: When I was in my early twenties, I loved to hunt, especially bow hunt. I loved archery and was actually a pretty good shot. One early morning I am in the woods and finally called up a couple turkeys. Now wild turkeys are the most challenging to hunt and I always wanted to kill one with my bow and arrow. Well I finally had my chance. I called up two turkeys and when I thought they were close enough, I pull up my compound bow and I couldn’t pull it back. I did not realize until that moment that my shoulder muscles that are required to pull back the bowstring were now gone. That ended my archery career.
The same thing happened when I joined a work softball team in my mid-twenties. I loved to play softball and was pretty good at it when I was younger. Well, I go to our first practice, get up to bat and hit the ball to right field. I was excited because I wanted to do well, but when I take off to first I realize that something is wrong. I am really having a hard time running. Well, long story short, I got thrown out at first base by the right fielder. Now guys on a softball team can be brutal and I found that out immediately. I pretended to have hurt myself because at that point in my life, I was embarrassed and had no clue what was going on with my leg muscles. That ended my softball career.
So with two things I loved to do out of the picture, I decided it was time to see a Doctor. I started with my family doctor. He referred me to an orthopedic specialist who referred me to a Neuromuscular Clinic. I finally get an appointment only to be poked, prodded, stabbed, twisted and turned inside out without a diagnosis. They needed to run more tests, but they thought I had some form of muscular dystrophy that they had not seen before. I was not in the mood for more tests!
I’ll back up a bit and give you some family history. My Grandpa on my Mother’s side had similar issues, but never went to the doctor. My Uncle on my Mother’s side has similar muscle weakness as well. “You must have what Grandpa had.” is all I ever heard from Family when I started having problems. Well I did not accept that as a diagnosis and was bound and determined to find out what was wrong and hopefully get it fixed.
It wasn’t until I was in my late twenties that I finally found a doctor in St. Louis that told me what I had. He said most likely I had Fascioscapulohumeral Dystrophy…FSHD for short. That’s when I learned that they did not know what caused it and there was no treatment at all. So I just learned to live with it like Grandpa did and my Uncle Richard does. I was fine! Who needs to run anyway? Who needs to shoot a bow and arrow anyway? At least I was healthy and could still play golf…right? At least I can still play guitar and play the drums…right?
In my thirties I started noticing weakness in my abdomen, forearms, legs and feet. I could not raise my arms over my head anymore. Climbing stairs became harder and harder. I started tripping and falling a lot. The problem was, once I tripped and fell down, I could not get up off the floor without the help of a chair or solid surface. Also the muscles in my abdomen weakened to the point where it looked like I was pregnant. Meanwhile I stayed positive and hoped that someday researchers could find out what the hell caused this disease and give me some sort of hope for a treatment.
In my 40‘s, I noticed the progression slowed considerable. Even though I can barely climb stairs, cannot play my beloved game of golf, run or play ball, I am very blessed. I still play guitar even though muscles in my hands and forearms cause problems. I pretty much gave up playing the drums mainly because it’s too hard to carry all the equipment. I am blessed!! Even though my disease has brought me to the point where I cannot continue working as a Medical Equipment Technician in a hospital environment, I never give up.
last year, I made the difficult decision to apply for disability and was approved. Luckily my company offered short-term disability. After using up all my personal days and about to run out of company-sponsored short-term disability benefits, I get a phone call from Human Resources. They asked me if I would like to interview for a job as a Diagnostic Cardiology Technical Support Engineer. Now this is the job I had been trying to get for 3 years. Four interviews and two months later, I land the job. My start date was the exact date that my short-term disability benefits were set to run out. I work from a home office, no commute, nice raise, no tripping and falling in the halls of the hospital, no people staring at me wondering what is wrong. My dream job. I am glad I never lost hope.
You see I have fallen down so many times in my life, but I always got back up. If you give up mentally, your body gives up as well. I will never let my muscles tell me I can’t play the guitar. That is one love I will never release. These days I find myself in awe of what can happen if you keep the faith and never lose hope.
If you have read this far, I’m impressed. I would like to tell you about a couple great organizations. The FSH Society, Muscular Dystrophy Association, Friends of FSH Research and The Chris Carrino Foundation just to name a few that have funded research that has made great strides in the last 10 years. We now know what gene or set of genes is causing the problem. They have just recently developed a mouse model for treatment research. Things are looking good for a treatment or a cure in the next 5-10 years.
Drop me a line at email@example.com if you have any questions or would like to join the fight with me.
Thank you for reading my story of hope. Like Dr. Wayne Dyer says, "Don't let your music die with you.” Never lose hope.
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My favorite Songwriter Joel Shewmake
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