Charcot-Marie-Tooth UK

Hello

I live in Australia and have had Charcot Marie Tooth since I was born but only diagnosed when 17 (by a neurologist after a few foot operations. My last major operation was a triple arthodesis to fuse my ankle and to walk straight. It was successful. I am somewhat independant and need help on an off through the day in which my husband helps me. I see an Exercise Physiologist and have seen a Physiotherapist in the past. Also the Occupational Therapist came out to see what I need help with. I have muscle wastage in the legs and arms and my arm is being difficult in it cracks and bit of numbness near writst and one finger joint clicky. Anything heavy my husband lifts especially if dangerous like hot water. The last few years have written a poetry and children's book with activities and now researching to write a historical novel. A real learning curve. I am trying to use the left arm a bit more especially using the mouse for the computer as my right arm gets sore and shoulder and at one stage the hand did not want to work properly writing. Good news is I can get voice recognition hardward to type on the computer in the future. We live in a small town of about 170 with surrounding farms in outback Queensland with our cat. I am having to learn one day at a time which I have to work on especially when a part of the body is changing. Socially has been good this year in our town although it is good to travel when possible. The garden is good but I need to limit my standing. I wish you all a good day and hope to keep in contact. Madonna

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Hi Donni nice to hear from you,I too have had several operations from early childhood I was 11years of age when I had my first operation,unfortunately my dad had terrible twisted feet the worst case of pes Cavas you can imagine so every time there was a new baby born to our family they were always checked out. I am in my seventies now and I find my arms are getting much worse,my legs have muscle wastage too, I wear a brace for my dropped foot but fall quite often ( so lucky I haven't broken anything yet). The most difficult thing I find is trying to describe to my GP how I feel they don't really have a clue about Charcots luckily we now have backing from our local group at the hospital near where I live and all the people I have met have been so supportive.

There are so many in our family with CMT from close syblings to cousins and of course my two daughters who unfortunately have it as well.

Good luck for the future

Thel.

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Hi Donnie, I'm Jane and I live in Brisbane , Australia. I'm 50 and of course I've always had CMT - didn't know about it until 2 1/2 years ago when my son was in hosp. He was sick and displayed neurological symptoms so he was placed under the care of a neurologist. He diagnosed him and said he got it from me as I had the physical signs. Upon further testing it was Type 2. Six months later when I got nerve pain, I was prescribed Lyrica and Vit D and later diagnosed by a neurologist. I have the CMT feet and legs, difficulty walking and standing, aching back and shoulder muscles and weak arms. I get short of breath all the time and use a walking stick as I have no balance. Life is difficult and CMT is s---. The worst thing is - this thing is hereditary and my kids will suffer.

My mum passed this on and said nothing - now she's dead. Can't talk bad about her - her life was bad enough as she wasn't aware that she had this. At least we know so we can help ourselves

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