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I Have Charcot-Marie-Tooth Disease.: Abel's Story. (Part One) by Karen Lynn Vidra, The Texas Tornado
Friday, November 20, 2009
Rated "G" by the Author.
A man lives with a little understood neurological disorder that's caused increasing disability.
My name is Abel Rosenheimer. I live in Alpena, Michigan, with my brother and his wife; my brother's wife, who is a nurse, acts as my primary caretaker.
I have a little-understood disorder called Charcot-Marie-Tooth disease, which is, basically, a disorder of the nerves; it is one of the most common neurological (neuromuscular) disorders, affecting as many as 37 out of 100,000 people in the US. It causes increasing weakness in the arms and legs, increasing insensitivity to touch (neuropathy), and other problems.
I now use a wheelchair. I have used a wheelchair since I was thirteen years old. (I'm now forty.) I was first diagnosed with this disease when I was ten after having painful tests; by the time I was 11, I was walking with a pair of crutches and wearing heavy steel braces on my legs; I could no longer walk by myself.
Each year, my disease has gotten worse. I am now unable to walk, dress/bathe/feed myself, or use the toilet on my own, and it's getting harder to move my shoulder and neck effectively. I can talk though (and I can talk your ear off if you'll let me! LOL); I am thankful for that! (To use the computer, I type with a pointer stick attached to a band I wear around my head. It's difficult, but I do manage quite well, as you can see.)
I may eventually lose my ability to speak/swallow/breathe, but I am not worried about that as of this time. Right now, I plan on enjoying my accomplishments rather than focusing on the negative aspects of my disease.
As a result of my disease, I am required to watch my weight (added poundage can cause pressure on my joints, which would only make things worse), maintain my strength/flexibility by participating in bi-weekly therapy sessions (I have physical, occupational, and water therapies to keep me supple and not make my problems worse), and not to get too emotionally upset (emotional upsets can only make my symptoms a lot worse).
I sometimes get frustrated because I can no longer go on long walks with my brother and his family, feed, bathe, dress myself, or brush my teeth and hair, as well as going to the toilet; this is especially degrading for me.
I sometimes have days where I feel sorry for myself; it's only natural, especially after a day of fighting with the government in trying to get my SSDI. The damn people keep telling me I am not disabled enough; just how disabled do I have to be in order to get results?? I cannot work; I can't even take care of myself or do a lot of things! It's crazy!!
Well, I am going to go; time for supper. Besides, I'm starved.
You haven't heard the last of my story; until next time, this is Abel Rosenheimer saying so long! Talk to you again soon!
~Abel.
*to be continued.*
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Reviewed by Aileen Harrison
4/5/2010
Hi Abel, Was diagnosed with CMT when I was 50. Always thought I was just clumsy. When I asked what I could do to help myself Doc said-"keep doing what you've always done - stay very active." Well I've tried, but no longer jive, nor jog, nor ride my bike. Can't open tins/bottles etc, and walk like a drunken sailor, but hey! what the heck - reading your storey reaffirmed what I've always known - I'm so lucky. I'm vertical, and living in paradise on the Sunshine Coast in Queensland Australia. Our average temp is 26 degrees C, one 0f the lovliest beaches in the world is 10 minutes from my front door and I have great family and friends.
My brother was striken with polio at 16 and paralysed from the neck down. Like you, he had a great personality and spirit...always laughing. He never improved but married at 25, ran a business from his chair and was a joy to talk to. After knowing him, and now reading your storey, I REALLY try NEVER to complain about anything.
I have relatives in Powell River, and Vancouver who also have CMT so it definately goes through families. Both my brothers have it also.
Keep up that great spirit, and I bet you have a great smile too.
Love and best wishes,
Aileen (the Aussie)
Does she get any disablity? I thsnk God everyday for being lucky and living. God bless Abel and you for bringing this to light.
Blessings, love and prayers be with all of you.
Susan
Good discription of the disorder. Went to University with woman who has this. The feet were her main issue followed by weak hands. Well done. Hugs, J'nia
"...I sometimes have days where I feel sorry for myself; it's only natural, especially after a day of fighting with the government in trying to get my SSDI. The damn people keep telling me I am not disabled enough..."
Nothing can be more terrible that a jerk telling you that you aren't sick enough or disable enough or...
Sometimes that God Bless America sounds like a joke!
Knew a lady with CMT disease. It left her legs and arms weak, her fingers clawed. Diabetes took her legs. Did that stop her? Nope. She could, with help, get in her scooter and buzz around. Nothing slowed her down. She was the one who let me drive her scooter - once. Ran over her doctor, was banished from driving. LOL! An informative write, very well penned, Karen.