I'm 41 and was diagnosed with CMT when I was 26. Up to that point no one in my family knew that we had it in the family; previously it was either misdiagnosed or in some mild cases not noticed.
I have made it a rule not to read about CMT on the internet or join any newsletters, forums; I did so to start with, but found it too depressing. I was just looking for information about stem cell research and came across this page.
In the 15 years that Ive known Ive had the disease, Ive lived an extremely active life - with homes in London, Asia and Africa. Ive made no attempt to modify lifestyle - in fact, the opposite, as I was determined to be able to retire young, through hard work. In London I ran a number of companies including a 100 man finance company and a tv production company. Last year I did indeed retire and now live in Sri Lanka.
I do not know how severely I have CMT - what I do know is that about 4 years back my balance started to become so poor that I thought I'd soon have to stop work earlier than intended.
I was then introduced to a guy in Morocco who does acupressure, in his own way. Through treatment from him, my balance improved radically. The treatment was very painful, and I have no idea if it is permanent - he says I need to see him ongoing every 4 to 6 months.
I went back to see my neurologist in London - the top guy in the UK on CMT and other neurological conditions - he was amazed at my balance. I do not have obvious significant improvement to "form" but actual use is fantastic.
I swim 60 lengths a day and walk for an hour with my five dogs - I dont get tired. My guy in Morocco encourages me to do other sports, mildly. This from a state where if I stood up, I would need to hold the table to ensure I didnt wobble too much.
Im thankful for the radical improvement in my life quality. I have no idea though how effective the same treatment would be for anyone else.
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I'm 41 and was diagnosed with CMT when I was 26. Up to that point no one in my family knew that we had it in the family; previously it was either misdiagnosed or in some mild cases not noticed.
I have made it a rule not to read about CMT on the internet or join any newsletters, forums; I did so to start with, but found it too depressing. I was just looking for information about stem cell research and came across this page.
In the 15 years that Ive known Ive had the disease, Ive lived an extremely active life - with homes in London, Asia and Africa. Ive made no attempt to modify lifestyle - in fact, the opposite, as I was determined to be able to retire young, through hard work. In London I ran a number of companies including a 100 man finance company and a tv production company. Last year I did indeed retire and now live in Sri Lanka.
I do not know how severely I have CMT - what I do know is that about 4 years back my balance started to become so poor that I thought I'd soon have to stop work earlier than intended.
I was then introduced to a guy in Morocco who does acupressure, in his own way. Through treatment from him, my balance improved radically. The treatment was very painful, and I have no idea if it is permanent - he says I need to see him ongoing every 4 to 6 months.
I went back to see my neurologist in London - the top guy in the UK on CMT and other neurological conditions - he was amazed at my balance. I do not have obvious significant improvement to "form" but actual use is fantastic.
I swim 60 lengths a day and walk for an hour with my five dogs - I dont get tired. My guy in Morocco encourages me to do other sports, mildly. This from a state where if I stood up, I would need to hold the table to ensure I didnt wobble too much.
Im thankful for the radical improvement in my life quality. I have no idea though how effective the same treatment would be for anyone else.
April 6, 2009 - 9:49amThis Comment
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