Guest guest Posted September 23, 2000 Report Share Posted September 23, 2000 Obsessing might just cause the problem . Forget it don;t think about it. i obsessed about my hands being a musician and let me tell you in weeks not months my hands got worse. so stop obsessing lvie your life how you can manage. The mind has a huge affect on this. -Adriel > From: " Shields " <mshield@...> > Reply- egroups > Date: Sat, 23 Sep 2000 13:25:44 -0400 > < egroups> > Subject: [ ] Disease progression > > Does anyone know or know of people who have had PA for a long time (10 years > or more) without it progressing to severe? I hear from MD's and pamphlets > that PA is often mild and doesn't necessarily progress. This obviously hasn't > been the case for most of the members of this group. My PA has progressed > dramatically recently and I'm just wondering if it will continue to get worse > over the next 10,20,30 years??? I know no one has a crystal ball but....I > can't help obsessing on what I might be in for in the future. I have two > young kids. Will I be able to dance at their weddings in 20 years? > Shields > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2000 Report Share Posted September 24, 2000 > Does anyone know or know of people who have had PA for a long time (10 years > or more) without it progressing to severe? <SNIP> > Shields I'm right at 10 years now - doing much better than I was at 5! I have no reason to expect things will change. Rob Glover Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2000 Report Share Posted September 24, 2000 Disease progression > > Does anyone know or know of people who have had PA for a long time (10 years or more) without it progressing to severe? > , My P arrived 36 years ago and A joined it 6 years later. The disease progressed slowly while I was being treated with minimal medication. I was almost fully disabled by 1994 when the Dr. started me on MTX. Since then, I have regained a great deal of mobility. Many small joints like toes have zero range of motion, but large joints are mostly OK. It can be slow. I assume that had I been treated with MTX (or some of the other things that were not around yet) sooner, I might have avoided that period of disability. It pays to be aggressive. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2000 Report Share Posted September 26, 2000 I'm really really bad and I still try to do what I can. As a composer, msuician guitarist, bassist, pianist losing my ahnd function is not easy but, Is till push myself. I love pens and still write when I can. My computer has been helpful for msuic. I'm goign to contact the media lab at MIT here to see if they have anything that allows me to work musically with voice or movement. They were working on this previousley os why not ask. ) -Adriel > From: " Louise Odonald " <lodonald@...> > Reply- egroups > Date: Tue, 26 Sep 2000 22:52:47 -0000 > egroups > Subject: [ ] Re: Disease progression > > >> Obsessing might just cause the problem . Forget it don;t > think > about it. i obsessed about my hands being a musician and let me tell > you in weeks not months my hands got worse. so stop obsessing lvie > your life how you can manage. The mind has a huge affect on this. >>> > > I think you have a good point. When I started having problems with my > hand a year and a half ago I didn't think much about it -- then went > to see a rheumy or two, one of whom said I should stop writing with a > pen (as if!!!!) -- and began obsessing. I began having more trouble > with hands after crocheting, say, and so forth ... anyway, I decided > I > was going to do what I wanted anyway. I just returned from a > decorative painting seminar, during which we painted for the better > part of four 10-hour days, and had very little problem. No doubt this > was in part because I really wanted to paint. Also, maybe it was due > to my taking evening primrose oil for the past several months (THANK > YOU GILLIAN. God, I miss her posts!!). And maybe I just haven't > gotten > bad enough -- but I like my first two explanations better! > > Louise > > > > > Please visit our new web page at: > http://www.wpunj.edu/icip/pa > > This past year had moderated a chat on arthritis at > www.about.com on Thursday evenings and hopes to start up doing so again soon- > we will keep you posted! Meanwhile, if anyone would like to start a weekly > chat on egroups, please contact or . Thanks > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2000 Report Share Posted September 26, 2000 > Obsessing might just cause the problem . Forget it don;t think about it. i obsessed about my hands being a musician and let me tell you in weeks not months my hands got worse. so stop obsessing lvie your life how you can manage. The mind has a huge affect on this. > > I think you have a good point. When I started having problems with my hand a year and a half ago I didn't think much about it -- then went to see a rheumy or two, one of whom said I should stop writing with a pen (as if!!!!) -- and began obsessing. I began having more trouble with hands after crocheting, say, and so forth ... anyway, I decided I was going to do what I wanted anyway. I just returned from a decorative painting seminar, during which we painted for the better part of four 10-hour days, and had very little problem. No doubt this was in part because I really wanted to paint. Also, maybe it was due to my taking evening primrose oil for the past several months (THANK YOU GILLIAN. God, I miss her posts!!). And maybe I just haven't gotten bad enough -- but I like my first two explanations better! Louise Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2003 Report Share Posted July 3, 2003 Hi Barb, I don't know anything about aol. I use hotmail and msn messenger for my chatting. I'm not real computer smart, just know a little about them. I was dx'd with cmt in 2001 and had never heard of cmt before. When the doc said charcot-marie-tooth I thought he was talking about my teeth. I still don't know alot about cmt and am also fairly new to the group. I didn't really worry about the cmt that much when first told because I wasn't having alot of trouble. But not in the last 8 months or so I have been having some trouble so I decided to start researching. I am 34, just turned 34 on June 22 and live in a small town in Ill. I was born in Largo Fl. though but moved when really small so don't remember living there. Anyway welcome to the group. ka Quote Link to comment Share on other sites More sharing options...
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