Guest guest Posted August 6, 2001 Report Share Posted August 6, 2001 Hi Andre, 1) Yes, Neurontin (gabapentin) and Elavil(amitriltyline) are medications some people with CMT take to help pain. There is NO medicine that will take away ALL of our CMT symptoms, but Elavil does help me with tremor control too. 2) I wear custom molded in-shoe orthotics, they slip in and our of my shoes. They were made by a Swiss man, Stefan (in Los Angeles) at http://www.swissbalance.com and have helped my walk stabilize. I do not have drop foot, but am a toe walker, so these orthotics help me put my heel down first, then toe, when I walk. For other walking help, I am sure members will tell you about AFOs or their braces, or go into our 'links' pages and look up Ankle Foot Orthotics. 3) Both women and men have CMT. But it seems on this list we hear more from the women, but let me assure you, there are men here - perhaps some of you gentlemen reading this would just say hello to Andre and share a bit? 4) I don't have weight issues, however, there is a CMTweightmanagement group for those that do. Some people here at have been dieting with good results. It is important to me and my CMT to eat healthy, small portions and 4-5 times a day. This is what my Dr. suggested. It helps my energy level. ~ Gretchen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2001 Report Share Posted August 6, 2001 Hello Andre and welcome, I am a man with CMT, 42 years old and diagnosed when I was 15. I pretty much ignored it because my doctors told me that I would never live a " normal " life. I have always been an athlete, got married and we had a son, now 18. Got divorced, started my own business at 25, sold it at 30. Worked for a large corporation for 8 years, quit and started my own business again. That's about as normal a life as you can get in America. I have mild CMT compared to many of my friends on the network, mild strength loss in the hands and small calf muscles and pes cavus foot. I wear orthotics in my shoes. As far as smoking marijuana, I used to use it recreationally, never for pain. I stopped years ago because it made me goofy and I am plenty goofy without it. As far as using it for pain I never have but I have seen it work wonders for two close friends, both with cancer. Andre, at 42 I still ride a bicycle, practice both judo and ju-jitsu and water-ski and wakeboard. If someday my body will no longer allow me to do these things than I will have to cross that bridge, maybe that day will come and maybe not, I am too busy living to worry about it. At 18 you need to learn all you can about CMT so you can make educated decisions regarding your life but most of all, HAVE FUN! Life is short, enjoy yourself. Regards, BC ----- Original Message ----- From: Gretchen Glick <liliwigg@...> < > Sent: Monday, August 06, 2001 11:19 AM Subject: [] items for Andre > Hi Andre, > > 1) Yes, Neurontin (gabapentin) and Elavil(amitriltyline) are medications > some people with CMT take to help pain. There is NO medicine that will > take away ALL of our CMT symptoms, but Elavil does help me with tremor > control too. > > 2) I wear custom molded in-shoe orthotics, they slip in and our of my > shoes. They were made by a Swiss man, Stefan (in Los Angeles) at > http://www.swissbalance.com and have helped my walk stabilize. I do not > have drop foot, but am a toe walker, so these orthotics help me put my > heel down first, then toe, when I walk. For other walking help, I am > sure members will tell you about AFOs or their braces, or go into our > 'links' pages and look up Ankle Foot Orthotics. > > 3) Both women and men have CMT. But it seems on this list we hear more > from the women, but let me assure you, there are men here - perhaps some > of you gentlemen reading this would just say hello to Andre and share a > bit? > > 4) I don't have weight issues, however, there is a CMTweightmanagement > group for those that do. Some people here at have been dieting > with good results. It is important to me and my CMT to eat healthy, > small portions and 4-5 times a day. This is what my Dr. suggested. It > helps my energy level. > > ~ Gretchen > > > Quote Link to comment Share on other sites More sharing options...
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