Guest guest Posted July 31, 2010 Report Share Posted July 31, 2010 My name is Jerry Walfish, I am 62 years old. Two years ago, my father, Jack Walfish, Treasurer of CMT's national organization died from a mixture of heart and CMT related items. His mother died 30 years ago [before we knew of CMT] of continuous joint pain, then thought to be arthritis. I have a 34 year old son with CMT who pretends he doesn't have it, and a niece who is so ashamed of having it [and the complications it brought her] that she had her tubes tied so that she wouldn't be able to pass on her genes. About five years ago I began to deteriorate from the toes up. Its like the old and song: I'm being swallowed by a boa constrictor... and I don't like it very much. As far as I can see, neurologists can't do anything for us - accept measure the rate of deterioration; orthopedic doctors can't help us except to prescribe toys that somewhat ameliorate or frustration and pain; internists are baffled and surgeons just want to operate. So the boa constrictor is up to my ankles and his cousin is attacking my fingers. I continuously get ulcers on my toes, my ankles are tired from the operations and I don't like it very much. The best thing I could do for me is to loose weight. Does anyone actually know how to do that while remaining relatively sedentary due to lack of feeling in your feet? Would any doctor prescribe weight loss surgery for this? Thank You Jerry Walfish 703 862 6789 Cell 609 301 8680 Home Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2010 Report Share Posted August 2, 2010 Welcome Jery, I feel the same way. I keep gonging though miny crises and wonder what will eventually put me in a nursing home or a wheelchair. I can't denie it, but reality isn't very pretty. Deb From: Jery Walfish <walfishj@...> Subject: My Introduction Date: Saturday, July 31, 2010, 3:20 PM Â My name is Jerry Walfish, I am 62 years old. Two years ago, my father, Jack Walfish, Treasurer of CMT's national organization died from a mixture of heart and CMT related items. His mother died 30 years ago [before we knew of CMT] of continuous joint pain, then thought to be arthritis. I have a 34 year old son with CMT who pretends he doesn't have it, and a niece who is so ashamed of having it [and the complications it brought her] that she had her tubes tied so that she wouldn't be able to pass on her genes. About five years ago I began to deteriorate from the toes up. Its like the old and song: I'm being swallowed by a boa constrictor... and I don't like it very much. As far as I can see, neurologists can't do anything for us - accept measure the rate of deterioration; orthopedic doctors can't help us except to prescribe toys that somewhat ameliorate or frustration and pain; internists are baffled and surgeons just want to operate. So the boa constrictor is up to my ankles and his cousin is attacking my fingers. I continuously get ulcers on my toes, my ankles are tired from the operations and I don't like it very much. The best thing I could do for me is to loose weight. Does anyone actually know how to do that while remaining relatively sedentary due to lack of feeling in your feet? Would any doctor prescribe weight loss surgery for this? Thank You Jerry Walfish 703 862 6789 Cell 609 301 8680 Home Quote Link to comment Share on other sites More sharing options...
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