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  Home > Health/Wellness > Stories > I Have Charcot-Marie-Tooth Disease.: Abel's Story. (Part One)
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I Have Charcot-Marie-Tooth Disease.: Abel's Story. (Part One)!
By Karen Lynn Vidra, The Texas Tornado   

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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!


*to be continued.* 

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