Welcome Janet and daughter

[Guest guest]

Again, Welcome Janet, thanks too for introducing yourself to the group. I

started this group because I found a lack of positive help on CMT, and for years

(before the Internet) my parents and I both struggled with lack of

information/wrong information, too many tests, etc. I hope we can be of some

help to you at .

Here's the link to our FILES on Ascorbic Acid (Vitamin C). Plus reading posts

forward from April 2004 will give you a better picture of how CMT has helped

some of our members.

/files/Ascorbic%20Acid%20%28Vitamin%20\

C%29%20%20Treatment/

I know all too well what it is like to not understand what your daughter is

going through. I had a very hard time at age 13 with my CMT. Especially with

fatigue and falls. I was medically excused from P.E. because I couldn't keep up

with my teamates and spent that time in our library. I fell mostly at night when

I was tired/overtired, and later was given Potassium therapy for my muscles and

Ritalin for fatigue. I also started some intensive physical therapy at this time

and when I wasn't riding, I was walking in the sand to strengthen ankles and

legs.

This was about 1965 and not much was known about CMT and my neurologists just

treated each complaint I had as it came. I still managed to ride horses on the

weekends, at the time, my only love.

Has anyone at Shriner's suggested orthotics for your daughter's feet or perhaps

AFOs to help her legs?

Your daughter sounds like such a beautiful giving, young lady, for having

started Dolls for K.I.D.S What a wonderful idea. I'm very interested - I'm an

overgrown doll lover - would like to see some pictures and hear more about her

program.

Having an S curve or Scoliosis is common in about 29% of people with CMT. A

smaller percent, about 5% have one hip higher than the other, but leg

measurements are the same. I am in that 5% group.

I can relate a bit to back surgery. I had a spinal fusion in 2002, not because

of CMT, but because of a slipped disc and for stablization. It was scary for me

even then (and I was 49 at the time!) But the good news is I had a GREAT doctor,

great physical therapy and have totally forgotten I even had the surgery! I had

bone from my hip taken to fuse my spine, then screws placed, then an electricial

bone stimulator set in. Within 3 months I made a great recovery, the stimulator

came out and I was back in my Aquatics program.

I'm sure you will hear from other parents with CMT teens. In the meantime, feel

free to post a question or your thoughts about CMT; were here for you. Have a

look around the site too.

Gretchen/Founder

Please visit our current poll: What is the impact of CMT on your financial

life? /polls

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