being proactive about CMT

[Guest guest]

Gretchen,

I apologize for all the questions, but since I'm new to the site I'm still

trying to gather as much info as I possibly can. I've done some aquatic

exercises and plan to do a lot more. I'm curious....if you don't use AFOs

exactly how bad was yours when you started to be proactive about it and how long

ago were you diagnosed? Have you ever used a cane? I do.

Carl *** Hey Carl, no need to apologize for questions. We've all got 'em! I was

originally diagnosed with CMT when I was 10 years old. Because the doc said to

swim and walk in sand alot, my parents got proactive with that for me. I didn't

really think I had a problem - but, remember I was only 10. According to the

orthopedist and my parents, my left foot was rolling out and my right foot was

rolling in. I remember them all looking at my shoes and seeing how they were

worn in an unusual way. The next summer I had tendon surgery on both feet to

straighten my walk. Which it did. When fatigued then, sometimes I would walk on

my toes - sometimes now I still find myself toe walking late in the evenings if

I am REALLY tired. In my teens,I had problems with muscle spascity onset late in

the day - again from fatigue. Remember, I was trying to keep up with my peers.

I had some serious physical therapy and my first neurologist gave me Ritalin and

prescription liquid Potassium to help with the fatigue. I never missed a day of

school and I went to all the dances and parties The more I slept, the more I

rested and learned to pace myself, the less spacisty I had and the less fatigue.

When I was 19, the tremors showed up when I was tired. I hated them and just

drank them away for 8 years. (also stayed away from all docs during that time)

About age 27, I sobered up and started to accept responsibility for my CMT.

Being in a 12 step program gave me some very useful tools that also helped me

with my CMT issues and gave me lots of support. So that's when I got " adult "

style proactive about CMT. No, I have never used a cane.

~ Gretchen