Guest guest Posted May 4, 2000 Report Share Posted May 4, 2000 Gretchen, You go girl....... in Indy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2000 Report Share Posted May 4, 2000 Dear Gretchen, I wish someone would have noticed my condition as a child. Nothing was ever done about my condition as a child, the DR.s didn't know what it was, so my family accepted that and went on with life. How nice it would have been for someone to have approached me and said " I know something you may not know. " When we asked my dad why his hands were like that and his legs, he'd make up a new story every time. Now that we all know he won't talk about it at all. I'm not into self pitty and my dad will drive you crazy with it. Anyway, I wanted to comment on the statement you made about whether people with CMT look similiar-I think there are tell-tale signs for sure. I have stork legs, and there just seems to be a certain way I walk-its the same way my dad and son walk. I can't really discribe it. My hands have not drawn up yet, but my dads and my sons have. It's different then arthritis( the look). The best thing thats ever happened to me in relation with CMT is finding others who share my experiences. --- Gretchen Glick liliwigg@...> wrote: > I was just thinking...I grew up learning NOT to ask > people what was > 'wrong' and was taught not to 'stare' also. Then, > being diagnosed with > CMT when I was 10, I discovered others didn't learn > this and were so > blunt in asking me what was 'wrong'. For years I > really believed > something WAS 'wrong' - with me, because I had CMT. > As I grew up, > matured and accepted that I had CMT and got on with > my life I gradually > realized nothing, absolutely nothing is 'wrong' with > me! What freedom > that realization has given me. I don't mind when > people ask me what I > have, since I know I am not a freak, and they are > curious, or perhaps > they know someone who 'looks' similiar. (but tell > me, just what does > someone with CMT really 'look' like? I wonder if we > got all 200+ of us > together for a group photo if we would 'look > alike'). And as for the > whole idea of people with disabilities having > something 'wrong' with > them, well, somewhere, somehow there's an attitude > needing adjustment. > Personally I know 200+ of the neatest, most heroic > and courageous people > the world has to give! (yeah, US!) Stepping off > my soapbox > now....lol > > Gretchen > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2000 Report Share Posted May 4, 2000 Dear Gretchen, I wish someone would have noticed my condition as a child. Nothing was ever done about my condition as a child, the DR.s didn't know what it was, so my family accepted that and went on with life. How nice it would have been for someone to have approached me and said " I know something you may not know. " When we asked my dad why his hands were like that and his legs, he'd make up a new story every time. Now that we all know he won't talk about it at all. I'm not into self pitty and my dad will drive you crazy with it. Anyway, I wanted to comment on the statement you made about whether people with CMT look similiar-I think there are tell-tale signs for sure. I have stork legs, and there just seems to be a certain way I walk-its the same way my dad and son walk. I can't really discribe it. My hands have not drawn up yet, but my dads and my sons have. It's different then arthritis( the look). The best thing thats ever happened to me in relation with CMT is finding others who share my experiences. --- Gretchen Glick liliwigg@...> wrote: > I was just thinking...I grew up learning NOT to ask > people what was > 'wrong' and was taught not to 'stare' also. Then, > being diagnosed with > CMT when I was 10, I discovered others didn't learn > this and were so > blunt in asking me what was 'wrong'. For years I > really believed > something WAS 'wrong' - with me, because I had CMT. > As I grew up, > matured and accepted that I had CMT and got on with > my life I gradually > realized nothing, absolutely nothing is 'wrong' with > me! What freedom > that realization has given me. I don't mind when > people ask me what I > have, since I know I am not a freak, and they are > curious, or perhaps > they know someone who 'looks' similiar. (but tell > me, just what does > someone with CMT really 'look' like? I wonder if we > got all 200+ of us > together for a group photo if we would 'look > alike'). And as for the > whole idea of people with disabilities having > something 'wrong' with > them, well, somewhere, somehow there's an attitude > needing adjustment. > Personally I know 200+ of the neatest, most heroic > and courageous people > the world has to give! (yeah, US!) Stepping off > my soapbox > now....lol > > Gretchen > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2000 Report Share Posted May 4, 2000 Dear Gretchen, I wish someone would have noticed my condition as a child. Nothing was ever done about my condition as a child, the DR.s didn't know what it was, so my family accepted that and went on with life. How nice it would have been for someone to have approached me and said " I know something you may not know. " When we asked my dad why his hands were like that and his legs, he'd make up a new story every time. Now that we all know he won't talk about it at all. I'm not into self pitty and my dad will drive you crazy with it. Anyway, I wanted to comment on the statement you made about whether people with CMT look similiar-I think there are tell-tale signs for sure. I have stork legs, and there just seems to be a certain way I walk-its the same way my dad and son walk. I can't really discribe it. My hands have not drawn up yet, but my dads and my sons have. It's different then arthritis( the look). The best thing thats ever happened to me in relation with CMT is finding others who share my experiences. --- Gretchen Glick liliwigg@...> wrote: > I was just thinking...I grew up learning NOT to ask > people what was > 'wrong' and was taught not to 'stare' also. Then, > being diagnosed with > CMT when I was 10, I discovered others didn't learn > this and were so > blunt in asking me what was 'wrong'. For years I > really believed > something WAS 'wrong' - with me, because I had CMT. > As I grew up, > matured and accepted that I had CMT and got on with > my life I gradually > realized nothing, absolutely nothing is 'wrong' with > me! What freedom > that realization has given me. I don't mind when > people ask me what I > have, since I know I am not a freak, and they are > curious, or perhaps > they know someone who 'looks' similiar. (but tell > me, just what does > someone with CMT really 'look' like? I wonder if we > got all 200+ of us > together for a group photo if we would 'look > alike'). And as for the > whole idea of people with disabilities having > something 'wrong' with > them, well, somewhere, somehow there's an attitude > needing adjustment. > Personally I know 200+ of the neatest, most heroic > and courageous people > the world has to give! (yeah, US!) Stepping off > my soapbox > now....lol > > Gretchen > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2000 Report Share Posted May 4, 2000 Hi Kathy, I know what you went through as a child...I had the same experience. But I was the only person in my family with CMT...no one in my family ever understood what my problem was, and I went to the same doctor for many years...not even being diagnosed. As a child it would have been so much easier if I could explain why I " walked and wrote funny " . It was such a relief when I was finally diagnosed at the age of eighteen, and it wasn't until I was 27 years old that I was diagnosed with the Roussy-Levy type. I actually thought the tremors that I had were caused by panic attacks...everyone in my family always said that I was a very nervous person and that I was crazy. Was I happy to know the truth, finally! Kathleen from Brooklyn Quote Link to comment Share on other sites More sharing options...
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