Thread: Cmt
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Old 04-22-2015, 07:55 AM
Susanne C. Susanne C. is offline
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Join Date: Jul 2011
Location: Mid-Atlantic coast
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Susanne C. Susanne C. is offline
Member
 
Join Date: Jul 2011
Location: Mid-Atlantic coast
Posts: 721
10 yr Member
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Quote:
Originally Posted by Coriny View Post
Does anyone with CMT on this site still work? Does the physical Therapy help?
Can you drive again with leg braces? Recently diagnosed and devastated!! Life will go on, and I will fight for my quality of life. It could have been worse!
If you are working now without too much difficulty you can probably continue for a long time. A lot depends on what type of work you do and how far you have to drive. Are you definitely getting AFO's? I do not have them yet, I am getting some type of brace, not those exactly, not sure yet about driving but my doctors are horrified that I drive as it is, but I only go in about a four mile radius, no highways. My reflexes are too slow for that.
I was a stay at home mom, taught English for a year three years ago, did fine but wasn't on much medication then. It really tired me out and could get very painful. The cold was the worst of it. I am 53 and this condition has slowly worsened throughout my life.
What type do you have, if they didn't give you a type is it myelin or axons? What are your symptoms now? It moves slowly but in my experience there can be big drop offs then a leveling off.
Physical therapy has helped with with the big drops- loss of strength in hands due to a flare up, arthritis in the spine, sprained ankle, etc. it is generally not considered to be very helpful in the long run for muscle atrophy which is inevitable, but I think it can delay things a bit. I have never regained normal function from it, but I have improved a little. It is important to have a therapist who understands even a little about CMT and doesn't push too hard or too long. Mine knows when to quit, and it isn't when they normally would. I stop regaining strength much sooner than without CMT.
You are right, it could be worse.
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