noelv's Discussions
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Same here
I would love to do it.
Our new foundation, American Dystonia Society, plans to address patient loneliness. I know how it feels to feel alone when I was diagnosed. I am drafting an organizational plan to have a peer-to-peer or patient-to-patient mentoring program so no o...
Stace,
On behalf of the group, I've started a new foundation for Dystonia, American Dystonia Society, which will be powered by fellow Dystonians. Our web site is not yet up but we have a rapidly growing group on Facebook. Being dystonia patients,...
I hope to have the rudimentary web site up and running soon.
Hi Noel: Let us know how your pitch goes. I will see my Physiatrist on Thurs but- given time constraints on docs these days- usually hardly have time to get my injections, never mind bring up something like this, but I will try. This docs backgrou...
I am a wannabe socialite :P
SRSLY though, thank you for taking the time to explain your vision and goals for the American Dystonia Society. So much has to be done in the dystonia community and I am sure there is plenty of work for everyone. I hop...
I am sure to get chastised by Beka for not taking the day off but Dystonia doesn't take the day off and like all of you, I am excited that this is finally happening and you and my friends and family gave me the strength to start this. Your support...
This foundation was formed by me and I am it's CEO and the only signatory on the accounts that have been set up for ADS. It is OUR group however and I am acting on behalf of all who are affected by Dystonia. I am not exclusionary by nature and wel...
YES, My orders !!1
beka, RN, MS, NP
On behalf of EVERYONE, thank you for your support and confidence in our endeavor.
It will be ready in a few days. Not with bells and whistles but relevant content like mission statement. What makes us different, etc..Welcome on board with any help you can give. Spreading the word, writing, tell us your story, send a picture. I ...
Care4 Dystonia will donate a xxxx amount of dollars to help cover costs...
beka
Website is www.dystoniasociety.org
If you search American Dystonia Society is does not come up, at least not yet.
Sadly, no website building capabilities, although I am considered a good writer and stellar editor.
Profile Information
- Location
- 08550
- More about me (my health interests and reasons for joining WEGO Health)
- Dystonia was apparently lowly developing over 20 years or more then flared up big time early 2006 and finally diagnosed fully in June 2007. I started a Dystonia support group on Facebook to facilitate exchange of experiences between other patients and caregivers. I felt we needed a localized support and discussion group to supplement the many national and international support and advocacy sites.
Comment Wall (6 comments)
- At 4:03pm on November 8, 2009,
Acquired Torsion Dsystonia said…
- I have 'other acquired torsion dystonia of the left posterior tibialis muscle'. this was secondary to post surgical convalesence at a VA hospital. I have gone to 5 neuros, 3 orthos, 1 podiatrist to support the proximate cause of the injury. Despite being assessed to the contrary, i could not non weight bear on my opposing leg which has a congenital defect (i was born without a hip socket). i receive
Botox treatments and this helps straighten my lower leg. i cannot get a doc to connect the dot, despite successful botox treatments. they don't want to go to court.
- At 1:56pm on July 29, 2009,
Rosemary said…
- Hi- Welcome. My Dystonia (Generalized) was slow developing too, and slower to be diagnosed! Mine is now terribly complicated by a failed neck surgery. Sometimes a bit much all the stuff that happens indirectly from Dystonia. Crazy. Good luck keeping your weight up.
- At 6:18am on July 11, 2009,
joanne said…
- Thank you, I will look into that. How are you?
- At 11:20am on March 6, 2009,
edahl said… - Thank you for the welcome Grace. I bet we have a lot in common since you have cervical dystonia too. I'd love to chat with you about my symptoms and yours. Do my symptoms seem to fit the bill? I think I have dystonia, but the docs don't agreee. After muscles have been in constant spasm for 3 years to varying degrees doesn't that sound like dystonia?
- At 11:17am on March 6, 2009,
edahl said…
- Thank you so much for your encouragement and help. I am so impressed with this website and the extremely intelligent and well informed people that are a part of it. I am learning more in two days than I have in years of research! Thank you!! Thank you also for the compliment on the baby. She gets cuter everyday! Also heavier, so that is a worry for me!
- At 10:17am on February 25, 2009,
TWISTEDJAM said… - Hi noelv !
I want to welcome you ... ((( WELCOME ))) !
Feel free to knock on doors here ... you will find comfort and friends !
My name is Grace (twistedjam) and I have Cervical Dystonia.
Toronto/Canada
© 2009 Created by Marie
