What is Dystonia
Dystonia (literally, "abnormal muscle tone") is a generic term used to describe a neurological movement disorder involving involuntary, sustained muscle contractions. Dystonia may ...
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why is no one using this forum? We are all in this together with no cure in the near future and I think we could all use the support of talking to each other.
We all have different issues but I think we can all get some support through each other. this is a terrible condition to deal with and I hope the discussions will pick up. Posted on 05/11/09, 02:05 pm |
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I think a lot of people are just finding this location. I know we all need support, and people with dystonia can really reach out and help other people. I know it is hard to deal with. I have multiple scelrosis, cervical dystonia, and now spasmodis dysphonia. Unable to speak. I know everyone has trouble coping with this, and I plan to use this forum quite often 
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I found it a short minute ago. I had been on wego Dystonia board. Never knew this one exsisted.
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I just joined this group this evening, having been a rather active member in the Parkinson's Disease group for the past few months.
While I can't speak for others, I can say that Dystonia is a little-known disease. I became familiar with it a few years ago (in 2004) when I was trying to diagnose my mother's odd symtoms via on-line research as my parents visited one neurologist after another in search of answers. I came up with Parkinson's Disease and Dystonia. Two years later, in 2006, she was diagnosed with PD; last month, she was also diagnosed with having Dystonia after I nudged her to have her PD-neurologist examine her for Dystonia. Long story short, I'm a firm believer in the Daily Strength Parkinson's Disease Support Group, in which discussions much helpful information is shared among people with PD as well as their caregivers. In addition to the exchange of information, there's also the added benefit of emotional support and friendship. So, in short, I'm all on board to be active with this support group as well. Physicians can do a lot medicinally, but it's up to us to do our part as well. I look forward to getting to know you and hope we can all help each other on this journey of good days and bad... Kind regards to all, Iris
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I also just found this site ..Having been diagnosed a few months ago I am still seeking any and all information on this condition..It progresses so fast and sometimes with no warning . I do also use another site as well to ask questions and people have been very helpful http://health.groups.yahoo.com/gro... that is the link if you would like to sign up on that one as well..It is listed as DBS but people ask all kinds of question...I too am signed up on the Dystonia Bullentin Board I dont have much success with that one but it does have a chat room ..
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