Guest guest Posted March 27, 2002 Report Share Posted March 27, 2002 Dear Joyce, wow, what a story! That article of Paolo's Is 4 years old and yet still timely. (I am trying to get an update on it and also I inquired about the pictures a few of you said you couldn't get). Never worry about the length of a post! ~ Gretchen Joyce S wrote: > So Dr. Vinci has a very valid point about the CMT > patients' reservations on the aesthetics and comfort > of the AFO. I say it all the time: CMT is a very > frustrating condition to have since often we are not > viewed to be debilitated enough for a wheelchair(where > others visually see the physical challenge) and yet we > ARE physically challenged(as much as 3 or 4 times that > of a " normal " person, according to my neurologist). > But since others can't " see " the challenge, they > question it's validity. And then sometimes, as in my > case, the person with CMT often questions their own > limitations' validity as well. Without knowledgeable > professionals(in my experience, knowlegeable > professionals are scarce) to support the CMT patient, > often conflict arises leading to greater psychological > consequences for the CMT patient. Again, a suffering > of the CMTer that others often can't visualize. > but I felt > like shedding a greater light on Dr. Vinci's article. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2002 Report Share Posted March 28, 2002 This is oh so very true. I have people come to me and say they did not know anything was wrong with me -- however walking is of great difficulty. I have to take longer getting dressed and just doing plain EVERYTHING. My hands have trouble with getting me dressed in the morning and they are not clawed. The fingers are weak and don't have alot of feeling. I have to concentrate when I have to button a blouse, button pants and other things. People can't see it, so thus they do question the validity of the problem. I think this is very frustrating and so I personally find this very frustrating, even here at work alot of people do not know the problems I have, or let me say the extent of the problems. CMT, in many cases, can be very hidden. Terry Little littlet@... -----Original Message----- From: Gretchen Glick [mailto:liliwigg@...] Sent: Wednesday, March 27, 2002 2:25 PM Subject: Re: [] AFOs article Dear Joyce, wow, what a story! That article of Paolo's Is 4 years old and yet still timely. (I am trying to get an update on it and also I inquired about the pictures a few of you said you couldn't get). Never worry about the length of a post! ~ Gretchen Joyce S wrote: > So Dr. Vinci has a very valid point about the CMT > patients' reservations on the aesthetics and comfort > of the AFO. I say it all the time: CMT is a very > frustrating condition to have since often we are not > viewed to be debilitated enough for a wheelchair(where > others visually see the physical challenge) and yet we > ARE physically challenged(as much as 3 or 4 times that > of a " normal " person, according to my neurologist). > But since others can't " see " the challenge, they > question it's validity. And then sometimes, as in my > case, the person with CMT often questions their own > limitations' validity as well. Without knowledgeable > professionals(in my experience, knowlegeable > professionals are scarce) to support the CMT patient, > often conflict arises leading to greater psychological > consequences for the CMT patient. Again, a suffering > of the CMTer that others often can't visualize. > but I felt > like shedding a greater light on Dr. Vinci's article. Acceptance and gratitude are the keys to living positive with CMT! knows CMT does NOT affect our brains or intellectual capacity! CMT affected persons often far exceed average intelligence. Adapting to a (currently) incurable chronic illness and a life of great uncertainity can result in ingenious achievement, heightened creativity and extreme giftedness in developing a unique manner for task accomplishment with the smallest amount of physical effort! Our upbeat slogan is (we) CAN MANAGE THIS! Why? Because we're ALL WINNERS at by sharing our CMT lives with each other in an upbeat, generous and positive manner here at our 'one-of-a-kind' group! During 2001 alone, known, diagnosed cases of CMT disease have spread globally by 62.5%. is committed to bring you not only positive sharing and new resources, but research and regenerative medicine news about CMT as well! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2002 Report Share Posted March 28, 2002 Gretchen, I also was not able to get the pictures and very interested since I have braces that I made them cut down to just above the ankle but they are still " " Ugly " eventhough I cover themwith socks (details if anyone wants them on how). I have beenthinking for the longest time that there must be a thinner material that is still strong. (I did study O.T. and aced all my courses; esventhough physically I couldn't do the Fieldworks.) Anyway, is there a way that we can get to view the pictures? Thanks, Dawn --- Gretchen Glick <liliwigg@...> wrote: > Dear Joyce, wow, what a story! That article of > Paolo's Is 4 years old > and yet still timely. (I am trying to get an update > on it and also I > inquired about the pictures a few of you said you > couldn't get). Never > worry about the length of a post! ~ Gretchen > > Joyce S wrote: > > So Dr. Vinci has a very valid point about the CMT > > patients' reservations on the aesthetics and > comfort > > of the AFO. I say it all the time: CMT is a very > > frustrating condition to have since often we are > not > > viewed to be debilitated enough for a > wheelchair(where > > others visually see the physical challenge) and > yet we > > ARE physically challenged(as much as 3 or 4 times > that > > of a " normal " person, according to my > neurologist). > > > But since others can't " see " the challenge, they > > question it's validity. And then sometimes, as in > my > > case, the person with CMT often questions their > own > > limitations' validity as well. Without > knowledgeable > > professionals(in my experience, knowlegeable > > professionals are scarce) to support the CMT > patient, > > often conflict arises leading to greater > psychological > > consequences for the CMT patient. Again, a > suffering > > of the CMTer that others often can't visualize. > > > but I felt > > like shedding a greater light on Dr. Vinci's > article. > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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