Guest guest Posted December 19, 2001 Report Share Posted December 19, 2001 In a message dated 12/19/2001 2:17:34 AM Central Standard Time, crazymom8592407@... writes: > I have > never spoken with anyone whom has CMT that has problems with their > hands. Anyone who does,a reply would be greatly appreciated.Kim > Kim, I have problems with my hands as do quite a few people in this group. The cold weather makes them worse. I drop things all the time. In fact, when I'm eating at my sister's house her dogs like to sit at my feet because they know I'll drop some food at some point! C Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2001 Report Share Posted December 19, 2001 In a message dated 12/19/01 3:17:34 AM Eastern Standard Time, crazymom8592407@... writes: > I have > never spoken with anyone whom has CMT that has problems with their > hands. Anyone who does,a reply would be greatly appreciated.Kim > > Kim, I have problems with my hands that are significant. I can type most days, but there are days I cannot even do that. I have lost total use for periods of time also. My hands are weak and my grip is very poor. They are worse when it it cold and if I try to use them too much when they are doing well, I lose them again. Zippers, buttons, jars, hair ribbons, make up etc., fine motor skills are bad. Wish you well. Don't give up. Keep hands warm. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2001 Report Share Posted December 19, 2001 I also have problems with my hands. Ifind it difficult to type, write, and even tie my shoes. Cold weather makes this worse. I have a brother who also has cmt he is deaf and has uses his hands to sign all his life he is 28 and his hands are not as bad as mine i am 30. His leg are worse than mine I have more muscle tone the he does he has always worn ako and I never have but I am at the point in my life now were I need to start wearing them...Hope this helps with you question. stacy ----- Original Message ----- From: C1520@... Sent: Wednesday, December 19, 2001 8:33 AM Subject: Re: [] CMT and hands In a message dated 12/19/2001 2:17:34 AM Central Standard Time, crazymom8592407@... writes: > I have > never spoken with anyone whom has CMT that has problems with their > hands. Anyone who does,a reply would be greatly appreciated.Kim > Kim, I have problems with my hands as do quite a few people in this group. The cold weather makes them worse. I drop things all the time. In fact, when I'm eating at my sister's house her dogs like to sit at my feet because they know I'll drop some food at some point! C Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2001 Report Share Posted December 19, 2001 I have an awful time with my hands. I can barely hold a pen, but luckily I can keyboard just fine, unless my hands are cold. The cold affects my hands, as well as repeated use, such as when I try on clothes and have to button or zipper. frequesntly. I'm not afraid to ask my husband or kids for help. They're always happy to oblige. ----- Original Message ----- From: stacy marlatt <tigger_girl6901@...> < > Sent: Wednesday, December 19, 2001 8:08 AM Subject: Re: [] CMT and hands > I also have problems with my hands. Ifind it difficult to type, write, and even tie my shoes. Cold weather makes this worse. I have a brother who also has cmt he is deaf and has uses his hands to sign all his life he is 28 and his hands are not as bad as mine i am 30. His leg are worse than mine I have more muscle tone the he does he has always worn ako and I never have but I am at the point in my life now were I need to start wearing them...Hope this helps with you question. > stacy > > ----- Original Message ----- > From: C1520@... > Sent: Wednesday, December 19, 2001 8:33 AM > > Subject: Re: [] CMT and hands > > In a message dated 12/19/2001 2:17:34 AM Central Standard Time, > crazymom8592407@... writes: > > > > I have > > never spoken with anyone whom has CMT that has problems with their > > hands. Anyone who does,a reply would be greatly appreciated.Kim > > > > Kim, I have problems with my hands as do quite a few people in this group. > The cold weather makes them worse. I drop things all the time. In fact, when > I'm eating at my sister's house her dogs like to sit at my feet because they > know I'll drop some food at some point! C > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2001 Report Share Posted December 19, 2001 I just notice weakness in my hands although I can still type and sew. I can crochet but not for long periods of time. I notice that when my hands get cold that I have a tendency to drop things. Thank the good Lord that I am 41 and I can still walk and work fulltime, although I have limitations I do not let that interfere with my life I just adapt!!!!! Good luck all and have a wonderful Christmas. Traci > -----Original Message----- > From: leggylindars@... [sMTP:leggylindars@...] > Sent: Wednesday, December 19, 2001 11:40 AM > > Subject: Re: [] CMT and hands > > In a message dated 12/19/01 3:17:34 AM Eastern Standard Time, > crazymom8592407@... writes: > > > I have > > never spoken with anyone whom has CMT that has problems with their > > hands. Anyone who does,a reply would be greatly appreciated.Kim > > > > > Kim, > I have problems with my hands that are significant. I can type most days, > but > there are days I cannot even do that. I have lost total use for periods of > > time also. My hands are weak and my grip is very poor. They are worse when > it > it cold and if I try to use them too much when they are doing well, I lose > > them again. Zippers, buttons, jars, hair ribbons, make up etc., fine motor > > skills are bad. Wish you well. Don't give up. Keep hands warm. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2001 Report Share Posted December 19, 2001 Hi Kim, I'm Judy. CLASSICALLY speaking, CMT starts at the furthest extremities and works it's way inward and is SUPPOSE to stop at the elbows and knees. So, that would mean the hands and feet are usually the first and worst. I hope this helps. Are you in contact with and/or a member of your local MDA Clinic or Chapter? If not this is a good place to start, anyway. If you need an ear, always here! Peace & Love Judy g. crazymom8592407 wrote: > Does anyone ever get cramps in their hands when holding on to > something even for a short time? I have not been diagnosed with CMT > but, my daughter's and son have. I have always had problems with my > feet. I am currently in the process of getting tested. (DNA) I have > never spoken with anyone whom has CMT that has problems with their > hands. Anyone who does,a reply would be greatly appreciated.Kim > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2001 Report Share Posted December 19, 2001 Hi , Owen here, You mentioned problems buttoning and zipping when your hands are cold. I have a device that is a handle the size of a magic marker with a hook on one end and a loop on the other. The hook is for the zippers and the loop helps you button shirt size buttons. It really works well and that way my wife does not have to be my zipper attendant. I think if you search the archive you may find more information about the buttoning device. As far as our hands not working in the cold it seems to be a problem for all of us with CMT. Happy Trails, Owen cindy kruser wrote: > I have an awful time with my hands. I can barely hold a pen, but luckily I > can keyboard just fine, unless my hands are cold. The cold affects my hands, > as well as repeated use, such as when I try on clothes and have to button or > zipper. frequesntly. I'm not afraid to ask my husband or kids for help. > They're always happy to oblige. > ----- Original Message ----- > From: stacy marlatt <tigger_girl6901@...> > < > > Sent: Wednesday, December 19, 2001 8:08 AM > Subject: Re: [] CMT and hands > > > I also have problems with my hands. Ifind it difficult to type, write, and > even tie my shoes. Cold weather makes this worse. I have a brother who also > has cmt he is deaf and has uses his hands to sign all his life he is 28 and > his hands are not as bad as mine i am 30. His leg are worse than mine I have > more muscle tone the he does he has always worn ako and I never have but I > am at the point in my life now were I need to start wearing them...Hope this > helps with you question. > > stacy > > > > ----- Original Message ----- > > From: C1520@... > > Sent: Wednesday, December 19, 2001 8:33 AM > > > > Subject: Re: [] CMT and hands > > > > In a message dated 12/19/2001 2:17:34 AM Central Standard Time, > > crazymom8592407@... writes: > > > > > > > I have > > > never spoken with anyone whom has CMT that has problems with their > > > hands. Anyone who does,a reply would be greatly appreciated.Kim > > > > > > > Kim, I have problems with my hands as do quite a few people in this group. > > The cold weather makes them worse. I drop things all the time. In fact, > when > > I'm eating at my sister's house her dogs like to sit at my feet because > they > > know I'll drop some food at some point! C > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2001 Report Share Posted December 19, 2001 Kim, Yes my hands suffer with cramping a lot, especially when I use them too much, or if they get cold. I find that putting them under very warm running water for a minute or so really eases the cramping. ----- Original Message ----- From: Judy Piersol <stronggirl2@...> < > Sent: Wednesday, December 19, 2001 10:43 AM Subject: Re: [] CMT and hands > Hi Kim, > I'm Judy. CLASSICALLY speaking, CMT starts at the furthest extremities > and works it's way inward and is SUPPOSE to stop at the elbows and > knees. So, that would mean the hands and feet are usually the first and > worst. > I hope this helps. Are you in contact with and/or a member of your local > MDA Clinic or Chapter? If not this is a good place to start, anyway. If > you need an ear, always here! > Peace & Love > Judy g. > > crazymom8592407 wrote: > > > Does anyone ever get cramps in their hands when holding on to > > something even for a short time? I have not been diagnosed with CMT > > but, my daughter's and son have. I have always had problems with my > > feet. I am currently in the process of getting tested. (DNA) I have > > never spoken with anyone whom has CMT that has problems with their > > hands. Anyone who does,a reply would be greatly appreciated.Kim > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2001 Report Share Posted December 19, 2001 --- crazymom8592407 <crazymom8592407@...> wrote: > Does anyone ever get cramps in their hands when > holding on to > something even for a short time? I have not been > diagnosed with CMT > but, my daughter's and son have. I have always had > problems with my > feet. I am currently in the process of getting > tested. (DNA) I have > never spoken with anyone whom has CMT that has > problems with their > hands. Anyone who does,a reply would be greatly > appreciated.Kim > Kim, I would rather suspect that anyone who has cmt and does not have trouble with their hands is in a minority. I have a cousin whose legs are badly affected and yet complains of no trouble with her hands, NOT IN MY CASE. I have the cramps you speak of, it is most notable when I use the carwash and must squeeze the handle for an eternity (seemingly) or at least a minute and a half. Counter persons are always trying to count my change for me because I take so long and usually drop some before I'm done. I'm sure you will have lots of replies on this. Jim Nash > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2001 Report Share Posted December 19, 2001 Judy you know I love you but classically speaking about CMT is not the reality of living with this disease. Classically speaking is done by those who don't have or live with severe CMT. It doesn't stop at our elbows or our knees but can spread throughout our bodies. It can take away our ability to walk, to use our hands, our ability to breathe normally or even our ability to enjoy making love. No one really tells us about severe CMT and yet they pat us on the head and patronise us. They being people who don't have to live with it. Maybe we should all get together and write a book about 'The Truth of living with CMT not what the Doctors Say.' Love and hugs (and I still love you) Sue X The important thing is never to stop questioning. Website www.horder-mason.freeserve.co.uk Freelance Writer and CMTer " I Thank God for my handicaps, for through them, I have found myself, my work, and my God. " - Helen Keller ----- Original Message ----- From: Judy Piersol Sent: Wednesday, December 19, 2001 4:43 PM Subject: Re: [] CMT and hands Hi Kim, I'm Judy. CLASSICALLY speaking, CMT starts at the furthest extremities and works it's way inward and is SUPPOSE to stop at the elbows and knees. So, that would mean the hands and feet are usually the first and worst. I hope this helps. Are you in contact with and/or a member of your local MDA Clinic or Chapter? If not this is a good place to start, anyway. If you need an ear, always here! Peace & Love Judy g. crazymom8592407 wrote: > Does anyone ever get cramps in their hands when holding on to > something even for a short time? I have not been diagnosed with CMT > but, my daughter's and son have. I have always had problems with my > feet. I am currently in the process of getting tested. (DNA) I have > never spoken with anyone whom has CMT that has problems with their > hands. Anyone who does,a reply would be greatly appreciated.Kim > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2001 Report Share Posted December 19, 2001 , Reading your description of how your hands work (or don't work) mirror my syptoms EXACTLY. You are so right about the importance of keeping our hands warm. Running my hands under very warm water helps warm them up and ease the cramping I sometimes get. Thanks for sharing. ----- Original Message ----- From: <leggylindars@...> < > Sent: Wednesday, December 19, 2001 10:39 AM Subject: Re: [] CMT and hands > In a message dated 12/19/01 3:17:34 AM Eastern Standard Time, > crazymom8592407@... writes: > > > I have > > never spoken with anyone whom has CMT that has problems with their > > hands. Anyone who does,a reply would be greatly appreciated.Kim > > > > > Kim, > I have problems with my hands that are significant. I can type most days, but > there are days I cannot even do that. I have lost total use for periods of > time also. My hands are weak and my grip is very poor. They are worse when it > it cold and if I try to use them too much when they are doing well, I lose > them again. Zippers, buttons, jars, hair ribbons, make up etc., fine motor > skills are bad. Wish you well. Don't give up. Keep hands warm. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2001 Report Share Posted December 20, 2001 Hey Sue, That's why I put CLASSICALLY and SUPPOSE TO stop, in all caps - my way of trying to be sarcastic and yet explain to her, why and that it does affect the hands. see that was my third BAD this in one morning. okay, I'll shut up until I can write properly again. lots 'o love Judy g. Sue Horder-Mason wrote: > Judy you know I love you but classically speaking about CMT is not > the reality of living with this disease. Classically speaking is done > by those who don't have or live with severe CMT. It doesn't stop at > our elbows or our knees but can spread throughout our bodies. It can > take away our ability to walk, to use our hands, our ability to > breathe normally or even our ability to enjoy making love. > No one really tells us about severe CMT and yet they pat us on the > head and patronise us. They being people who don't have to live with > it. > Maybe we should all get together and write a book about 'The Truth of > living with CMT not what the Doctors Say.' > Love and hugs (and I still love you) > Sue X > The important thing is never to stop questioning. > Website www.horder-mason.freeserve.co.uk > Freelance Writer and CMTer > > " I Thank God for my handicaps, for through them, I have found myself, > my work, and my God. " - Helen Keller > > ----- Original Message ----- > From: Judy Piersol > > Sent: Wednesday, December 19, 2001 4:43 PM > Subject: Re: [] CMT and hands > > > Hi Kim, > I'm Judy. CLASSICALLY speaking, CMT starts at the furthest > extremities > and works it's way inward and is SUPPOSE to stop at the elbows and > knees. So, that would mean the hands and feet are usually the first > and > worst. > I hope this helps. Are you in contact with and/or a member of your > local > MDA Clinic or Chapter? If not this is a good place to start, anyway. > If > you need an ear, always here! > Peace & Love > Judy g. > > crazymom8592407 wrote: > > > Does anyone ever get cramps in their hands when holding on to > > something even for a short time? I have not been diagnosed with > CMT > > but, my daughter's and son have. I have always had problems with > my > > feet. I am currently in the process of getting tested. (DNA) I > have > > never spoken with anyone whom has CMT that has problems with their > > > hands. Anyone who does,a reply would be greatly appreciated.Kim > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2001 Report Share Posted December 20, 2001 Kim, I have always had hand cramps, especially when writing. I pay bills online, communicate through EMail, etc. just to avoid writing. Thanks goodness for the computer! Karon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2001 Report Share Posted December 20, 2001 My hands feel itchy, they burn, they cramp, tingle, and hurt very much, which alarms me because I havent had it happen befor, but in the past few months its seemingly getting worse. I do have cmt, I am 17. Sometimes its as if I loose some sensation in my fingers. My hands are not comfortable anymore. >From: " crazymom8592407 " <crazymom8592407@...> >Reply- > >Subject: [] CMT and hands >Date: Wed, 19 Dec 2001 08:16:56 -0000 > >Does anyone ever get cramps in their hands when holding on to >something even for a short time? I have not been diagnosed with CMT >but, my daughter's and son have. I have always had problems with my >feet. I am currently in the process of getting tested. (DNA) I have >never spoken with anyone whom has CMT that has problems with their >hands. Anyone who does,a reply would be greatly appreciated.Kim > _________________________________________________________________ Send and receive Hotmail on your mobile device: http://mobile.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2001 Report Share Posted December 21, 2001 Somedays when my hands are tired and I grip tightly they cramp \ ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/web/. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2001 Report Share Posted December 23, 2001 Do you think maybe it's because it's winter... Do you live some where cold? I know mine seem progressivelly worse but i think some of it is because it's so cold... Also the holiday season is so busy..they seem sweaker shannon ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/web/. Quote Link to comment Share on other sites More sharing options...
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