Guest guest Posted February 28, 2011 Report Share Posted February 28, 2011 Pain, we could all write treatisies on pain. But,can you tell me more about the vocal chords. I have trouble with mine, and most doctors have said it is post nasal drip from allergies. But if it is CMT-related.... Thank You. Jerry Walfish ________________________________ From: Crabtree <linda@...> Sent: Sun, February 27, 2011 3:03:24 PM Subject: Re: getting appointments I agree, Jerry. I no longer tolerate " tests " and prefer to " run " my own medicine. I consult with a researcher I know personally about upcoming pain meds and do what I can to keep my weight and cholesterol down. I'm also in a 12 week voice therapy program to try to maintain the one vocal cord I have left. I'm trying to train Dragon Dictate but it isn't easy and I'm wondering if doing it will wear out my voice. Other than that, at my age and stage of CMT2a, I find the best way to cope is to live life the best way I can. I keep involved and interested in life and what's around me and contribute whatever and whenever I can. I think there's too little real knowledge about our CMT and too many doctors repeating the same old over and over. I know when a doctor has googled CMT as soon as I roll into their office and they tell me something I could have written 20 years ago. The description of CMT2a doesn't fit me at all but that's what the genetic testing showed so that's what they look for. But, when you consider that the different type descriptions seem to be sometimes derived from family groups, who knows what other symptoms may be part of another group with the same genetic marker. Being followed " by a CMT specialist has only discouraged me. " Charting " my deterioration does me no good. To my knowledge, no treatment or anything else has ever come of it and I actually pity the doctor who has to keep seeing CMT patients time and again and can do nothing for us. No wonder he'd rather be on his racing bicycle somewhere on a country road. So would I. The research is gratifying but often doesn't help us now. It may help our grandchildren down the road but in 68 years I've only seen real advancement in bracing and a little in pain relief for some plus genetic testing which might discourage some from having more CMT children. Before anyone jumps on me for that, I truly believe there are plenty of kids looking for good homes out there. You don't have to bring yet another CMT affected child into the world. But, that is a personal decision we each have to make. I'll never have another EMG and will not tolerate doctors " trying " things on me. I am my own best advocate and it's going to stay that way as long as I can speak, write and/or think clearly. On 27-Feb-11, at 2:23 PM, Jerry Walfish wrote: > Sympathetic, maybe. > Knowledgeable? I don't think so.. In fact, most of the time I have > felt that I was paying these people for the privilege of running > tests on me to expand their (limited) knowledge of CMT. > > In fact, I generally felt like I was a lab rat in someone else's > class on CMT CHmm, if I insert the electrode here, how high will he > - the rat- jump? If I increase the voltage by 10 percent, will he > jump 10 percent higher?) > > No thanks. Not that the crew in Detroit was any better. They just > want to " Chart your progress. " Substitute " deterioration " for > " progress " and voila, your transformation into a pedigree rat is > complete. > > Now that I KNOW that there is nothing they can do for us, I no > longer put up with that. I tell my physician the parameters under > which he or she can operate and I feel free to veto unresearched > " cures. " > > The best thing you can do is to take positive steps by reading the > material yourself and you can be more in charge of your life. > > Jerry > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2011 Report Share Posted February 28, 2011 Hi Jerry and Barb: Go to lindacrabtree.com, then CMTNEWS, then Vocal cords, speaking and swallowing. I have one paralyzed vocal cord. Of course it's CMT. Most people don't get this without some kind of neurological disease going on. I had symptoms for many years and actually saw the space where the cord should be a month or so ago when they put a little camera down my throat and voila! ...there it wasn't. The good one is doing double duty, stretching over to close the gap..almost...that's why I choke sometimes. Liquids get down the little crack that's left and I sound like I'm choking to death. I can't be heard in social situations, spoke with what sounds like a very hoarse and sometimes double sounding voice for years and actually lost my voice for about 2.5 years. I had an operation, Ishiki Type II laryngoplasty) that helped a lot and after the wedge they inserted was rejected, I still had and have a voice. So far so good, but I know if I overuse my voice it gets so frail I hardly have one. Watch it or you could lose it and that's serious. I stressed mine to the limit by using a hands free telephone talking to CMT people while I ran CMT International. Trying to project my voice to it for a couple of years just did it in. I believe the nerves that run the larynx are also classed as peripheral nerves as are other nerves you wouldn't expect. Perhaps Gretchen could look up other nerves classed as peripheral. I think the same nerve works the diaphragm. That's why diaphragm paralysis occurs for some of us. More later if you want to talk about it. On 28-Feb-11, at 9:43 AM, Jerry Walfish wrote: > Pain, we could all write treatisies on pain. > > But,can you tell me more about the vocal chords. I have trouble with > mine, and most doctors have said it is post nasal drip from > allergies. But if it is CMT-related.... > > Thank You. > > Jerry Walfish > > > ________________________________ > From: Crabtree <linda@...> > > Sent: Sun, February 27, 2011 3:03:24 PM > Subject: Re: getting appointments > > I agree, Jerry. I no longer tolerate " tests " and prefer to " run " my > own medicine. I consult with a researcher I know personally about > upcoming pain meds and do what I can to keep my weight and cholesterol > down. I'm also in a 12 week voice therapy program to try to maintain > the one vocal cord I have left. I'm trying to train Dragon Dictate but > it isn't easy and I'm wondering if doing it will wear out my voice. > Other than that, at my age and stage of CMT2a, I find the best way to > cope is to live life the best way I can. I keep involved and > interested in life and what's around me and contribute whatever and > whenever I can. > > I think there's too little real knowledge about our CMT and too many > doctors repeating the same old over and over. I know when a doctor has > googled CMT as soon as I roll into their office and they tell me > something I could have written 20 years ago. > > The description of CMT2a doesn't fit me at all but that's what the > genetic testing showed so that's what they look for. But, when you > consider that the different type descriptions seem to be sometimes > derived from family groups, who knows what other symptoms may be part > of another group with the same genetic marker. > > Being followed " by a CMT specialist has only discouraged me. > " Charting " my deterioration does me no good. To my knowledge, no > treatment or anything else has ever come of it and I actually pity the > doctor who has to keep seeing CMT patients time and again and can do > nothing for us. No wonder he'd rather be on his racing bicycle > somewhere on a country road. So would I. > > The research is gratifying but often doesn't help us now. It may help > our grandchildren down the road but in 68 years I've only seen real > advancement in bracing and a little in pain relief for some plus > genetic testing which might discourage some from having more CMT > children. Before anyone jumps on me for that, I truly believe there > are plenty of kids looking for good homes out there. You don't have to > bring yet another CMT affected child into the world. But, that is a > personal decision we each have to make. > > I'll never have another EMG and will not tolerate doctors " trying " > things on me. I am my own best advocate and it's going to stay that > way as long as I can speak, write and/or think clearly. > > > > On 27-Feb-11, at 2:23 PM, Jerry Walfish wrote: > > > Sympathetic, maybe. > > Knowledgeable? I don't think so.. In fact, most of the time I have > > felt that I was paying these people for the privilege of running > > tests on me to expand their (limited) knowledge of CMT. > > > > In fact, I generally felt like I was a lab rat in someone else's > > class on CMT CHmm, if I insert the electrode here, how high will he > > - the rat- jump? If I increase the voltage by 10 percent, will he > > jump 10 percent higher?) > > > > No thanks. Not that the crew in Detroit was any better. They just > > want to " Chart your progress. " Substitute " deterioration " for > > " progress " and voila, your transformation into a pedigree rat is > > complete. > > > > Now that I KNOW that there is nothing they can do for us, I no > > longer put up with that. I tell my physician the parameters under > > which he or she can operate and I feel free to veto unresearched > > " cures. " > > > > The best thing you can do is to take positive steps by reading the > > material yourself and you can be more in charge of your life. > > > > Jerry > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2011 Report Share Posted February 28, 2011 Hello All, Yes it's true. My weakness of vocal chords has increased with the years. Now I can not sing a hymn or hold a social atmosphere conversation for more than ten minutes. I am constantly straining to raise my voice above any noisy situation. 75 EdM from NH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2011 Report Share Posted February 28, 2011 I am not affected in this way at all. Gretchen Quote Link to comment Share on other sites More sharing options...
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