Thursday, June 13, 2013

What is 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 FSH is it progresses so 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.

     Two months ago 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 great organization, the FSH Society. FSH Society, Muscular Dystrophy Association, Friends of FSH Research and many other organizations, 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 10 years.

     FSH Society is a wonderful charity...please take time to visit their website and donate.
My current goal is to start raising funds for their research. I would love to have a fundraiser here in Nashville, TN. Drop me a line at if you would like to help.

Thank you for reading my story. Like Dr. Wayne Dyer says, “Don't let your music die with you.” Never lose hope.

Phil Bennett


mstout said...

Enjoyed your story. We have a 23 year old son diagnosed with FSHD right before his 17th birthday. Always encouraging to see how others press on!

mstout said...

Enjoyed your story. We have a 23 year old son diagnosed with FSHD right before his 17th birthday. Always encouraging to see how others press on!

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Special people & places

"Ashokan Farewell" by Jay Ungar

"The Third Day" a short story by my daughter Cagney Bennett

"The Third Day"

It was raining outside.

The raindrops covered everything as though they were cleaning, washing away the sin of the earth. He came to my door. The rain had covered him like a blanket. It hid his tears, his grief. But I could see.

We didn't speak. I stood in my doorway and him on the porch and we looked at each other. I don't know when, but I started to cry. Sobbing, for the entire world to see. I wanted to make him understand. I just stood there and watched him. He nodded and slowly put out his hand. I reached mine across the threshold, to grab him and pull him to me. He was gone.

I can't sleep.

I keep all the lights on and sit on my bed. When I close my eyes, I see the same scene. Playing over and over in my head. My mother tries to comfort me, but she doesn't understand. She can't comprehend the guilt I am feeling. She tells me,

"You need to move on. It's not healthy to be so upset over something like this. It happens. And you've got to keep living. Just remember the good things."

I don't answer her when she tells me this. I pretend not to hear. I stare at her, letting her glimpse my pain. Finally she gets exhausted over this battle and leaves me in my grief.

And it's only the first day.

The next day my mother tells me I have to go to school. Being with my friends will make me feel better. I go to my first class and I feel that all eyes are on me. Even if it isn't true. My friends give me sympathetic looks and hugs all day. Those comforting throw-away words are said in my direction through out the day. I don't listen.

At the end of the day, my best friend grabs my arm and pulls me aside.

"You look like crap. Seriously, I don't mean to be blunt but, wow, I'm seriously worried. Do you need someone to talk to? I'm here to listen. I bet you have a lot of stuff to get off your chest." I tell her I don't want to talk about it.

"Here's another alternative. Try writing. It'll help, I swear. But I want you to call me and talk whenever you want. OK?"
I nod in her direction and start to walk away.

"Wait! I gotta know, will you go?"

I don't answer. I just keep walking.

Luckily the house is empty when I get home. I go upstairs to my room. Lying on my bed is a picture that I've never seen before. It is me and him talking with our heads bent towards each other. His arm is around me, pulling me closer. And I'm smiling contently. Where did this picture come from? I feel tears in my eyes start to fall. Can't think about it. Don't think. Please don't think.

I drop the picture on the bed and go take a shower. I turn the water as hot as it will go. Perhaps in hope of scalding me. Let my pain be compared to his.

After my shower, I go back to my room and put the picture under my bed. I sit on my bed for a while and then get a notebook.

Dear you, You took my heart and I want it back. How dare you hurt me like you did...Dear you,I miss you. I love you. I'm sorry. I want to hold you once more...Dear you, One day I hope you receive this letter. I want you to understand the pain. How much I ache for you. I can't even write the anguish I feel. Why can't we be together? I miss everything...

I throw the notebook across the room in disgust. There was no hope in letting out my hurt by writing. I'm not ready for it. I fall back on the bed and wearily close my eyes. Sometime later, my mother comes into my roomand covers me up, but I don't try to fully wake up. Let me sleep in my dark abyss.

And it's only the second day.

When I wake the next morning, it is raining. I have an intense feeling of déjà vu. My mother comes in with two pink roses.

"Do you know what you're going to wear? I have a couple ideas. I thought you could take these roses. You can do whatever you want with them. Do you want me to come with you? I'd be happy to."

I shake my head and thank her for the roses. She gives me a hug, causing my tears to start again. After she leaves, I attempt to find something to wear. The clothes blur together and finally I grab something black and put it on. With my hair up in a bun, I don't look like the girl I used to be. Pain has etched lines in my face and the black dress makes me look paler than I already am.

As I leave the room, for some reason, I grab the picture from under the bed and take it with me.

I am standing in front of the box. The only thing that remains of him on this earth is this box. I watched it be lowered into the ground.

"Dear you, "I say quietly, "You are the earth and the sky to me. You are the air that I breathe. You brought my cold heart to life with your love. Not a day will go by that I will forget your smile, your touch, your words. I will never stop saying praise to God for bringing you to me. I've lost my other half.Good-bye.Love, me"

I set the pink roses and the picture of us on the coffin. I let myself cry one last time. Then I walk away.

And it's only the third day.