Guest guest Posted May 25, 2000 Report Share Posted May 25, 2000 << Those 'expectations' were what members of the medical community not only 'expected', but 'predicted' and even 'suggested'. >> And other CMTers are told they will not get worse; their hands will never be affected; they will never need mobility aids of any sort; they will never have pain, and so forth. Doctors can be ignorant or uninformed. AND -- There is NO way to predict that any given CMTer will OR will not be affected these ways. CMT is NOT predictable. I agree that we need to live our lives as best we can. If our bodies change we can find ways to adapt. If you need AFOs or orthotics, get them. If you need a walking stick, cane or walker to be safe, do that. If gently exercise helps you feel better, do that. Swimming is good, for example. Whatever it takes, is my motto. Keep a stiff upper lip and all that. Good luck! Kat in Seattle >^,^< Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2000 Report Share Posted May 25, 2000 << Those 'expectations' were what members of the medical community not only 'expected', but 'predicted' and even 'suggested'. >> And other CMTers are told they will not get worse; their hands will never be affected; they will never need mobility aids of any sort; they will never have pain, and so forth. Doctors can be ignorant or uninformed. AND -- There is NO way to predict that any given CMTer will OR will not be affected these ways. CMT is NOT predictable. I agree that we need to live our lives as best we can. If our bodies change we can find ways to adapt. If you need AFOs or orthotics, get them. If you need a walking stick, cane or walker to be safe, do that. If gently exercise helps you feel better, do that. Swimming is good, for example. Whatever it takes, is my motto. Keep a stiff upper lip and all that. Good luck! Kat in Seattle >^,^< Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2000 Report Share Posted May 25, 2000 << Those 'expectations' were what members of the medical community not only 'expected', but 'predicted' and even 'suggested'. >> And other CMTers are told they will not get worse; their hands will never be affected; they will never need mobility aids of any sort; they will never have pain, and so forth. Doctors can be ignorant or uninformed. AND -- There is NO way to predict that any given CMTer will OR will not be affected these ways. CMT is NOT predictable. I agree that we need to live our lives as best we can. If our bodies change we can find ways to adapt. If you need AFOs or orthotics, get them. If you need a walking stick, cane or walker to be safe, do that. If gently exercise helps you feel better, do that. Swimming is good, for example. Whatever it takes, is my motto. Keep a stiff upper lip and all that. Good luck! Kat in Seattle >^,^< Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2000 Report Share Posted May 25, 2000 In a message dated 25/05/00 01:57:56 p.m. Pacific Daylight Time, KathleenLS@... writes: << Whatever it takes, is my motto. Keep a stiff upper lip and all that. Good luck! Kat >> Good Motto Kat, jenny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2000 Report Share Posted May 25, 2000 I have a really good doctor, he has never assumed what will happen. He has told me what can happen and what we will do if it does happen. He has always listened to what I say and then we eliminate to see if it is CMT or something else. My aunt also has him as her doctor and she says the samething. I know how different CMT can be because of our family history. I have been affected since I was a young child although I was only diagnosed 2 years ago. My mom is in her 50's and is just starting to show signs. My aunt and cousin who are both disabled due to CMT have very differnt symptoms than I do. My aunt has severe footdrop and I do not. But on the other hand My feet are turned to the point of causing severe back pain because of out of alignment of my body. Her hands are affected as are mine but her sons are not. He has tremors all of the time she never has them and I do when I have done to much or try to lift .. So know one knows how it will affect an individual, even within a family. Danieta Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2000 Report Share Posted May 25, 2000 Hello Brad, while I am not certain of my 'type' of CMT, I can tell you that doctors told me what to 'expect' from the time I was a kid - and none of it has happened yet. I was 'supposed' to be wearing leg braces by age 18, with 2 or 3 other surgeries before that. Leg braces haven't happened yet. (and I am 47) Then, when I was 27, I was 'supposed' to be in a wheelchair permanently by the time I was 30. On my 30th birthday I was traveling and no wheelchair in sight - and still not in sight yet. Those 'expectations' were what members of the medical community not only 'expected', but 'predicted' and even 'suggested'. So, the best I have to offer you is to make yourself comfortable as possible, live, love and enjoy your life.There is a very important connection to be considered - to stay as positive as you can. If medications or supplements or diet changes or physical therapy or massage or hottubs or inshoe orthotics or AFOs of a wheelchair or a scooter improve your quality of life, try them out. I have tried many different things to manage my CMT. Alot of my own life's journey with CMT was the 'trial and error' method. But I am no worse for the 'error' part. Find good Drs.or other practioners you like and get to know them and let them get to know you. Work together to manage CMT. And most of all, 'exercise' your brain, it is the best muscle we've got! Gretchen So. California Quote Link to comment Share on other sites More sharing options...
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