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WE MOVE is proud to provide a forum through which patients, their families and caregivers can come together to discuss the reality of living with a movement disorders. From time to time, we are privileged to receive a testimonial of what this community means to you. We would like to share one forum member’s comments as they capture the spirit behind the services that WE MOVE provides.
“I wrote this poem for one of our regulars when her father passed away. I have removed the parts that refer to her loss but thought you might enjoy reading it. I am sure it reflects the feelings of most who come here. This room has been a tremendous source of support and comfort to me and countless others…”
WEMOVE WECARE
Wemove. How ironic is that? To be the name Of our favorite chat.
When most of us either move More than we should, And others would gladly move If only they could.
But diversity of symptoms Makes us unique. Some cannot walk, Others can't speak.
But near every night We come together for talk, And usually stay Till well after dark.
PD, dystonia, Or even msa, It's into wemove, In the foyer we stay
For regardless of title It's really the same, We are all just players In this disorders game.
Just names on a wall? I'd rather say..NOT When I think of the support From the friends that we've got.
When one hurts, we all do, As it should be. For life sometimes deals us More than need be.
But your heartache is something That we can all share, For this chat room called 'WEMOVE' Should be renamed ' WECARE'
- Susan Popp, West Virginia Living with PD & Cervical Dystonia
As a small not-for-profit, WE MOVE is tremendously honored to provide this forum to everyone at no charge. Our ability to do this depends on the generosity of private donors, many of whom, like you, benefit from the services and resources offered by WE MOVE to the movement disorder community. We would like to be able to continue serve those who need us most, but we can’t do it alone.
We realize that everyone has a cause, charity or organization that they support. WE MOVE hopes that we can be one of yours. Your tax-deductible contribution will help ensure that WE MOVE can continue to serve the millions of individuals, who, because their diseases are difficult to diagnose and manage, might suffer needlessly for years. Please click on www.wemove.org/donations/ now and give as generously as you can. Thank you so much!
Posts: 451 | Registered: Mar 2006
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Greetings! Just a question for anyone that has been diagnosed with Huntington's - as I am being tested again, a second time for this - what were you first symptoms? and types of meds. have they found to help your condition?
Thanks so much for your help and if you have recently been diagnosed with this condition, my heart really goes out to you as well!
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THanks Stubby Knights! I actually have been tested again, a second time for Huntington's Disease - and am waiting for the results - but since the first one came back negative, I am pretty such that this one will too. And the fact that I don't really have any signs of fidgeting except the intense involuntary muscle spasms that hit - it does't seem characteristic - but they always test for it - because they are not familiar with PKD.
quote:Originally posted by stubby_knight: Suzie Q - We hope you don't have Huntington's disease.
Ususally the first signs are fidgeting.
Can u tell me what copper as to do with H.D. I have had high levels of copper in urine but when tested for Wilson's, neg for blood ceruplasm. I have movement probs which r progressing. Twitching, spasms. Cramps. shoulder movements which r painfull, leg + arm, recently visited er for shoulder movements prescribed clonazepam. Dr mention Huntington's, family asymptomatic but grandfather a foundling. Lots more probs, cognitive stuff etc. seeing movement specialist end of this month. But just caught u mentioning copper so would like to know. thanxs.
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