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My dystonia slowly began about12-14 years ago as blepharospasm and vertical dystonia. Luckily Mayo's Jacksonvile successfully used botox in both areas. At that time my neurologist told me the best thing I could do is to get involved with the Dystonia Medical Research Foundation headquartered in Chicago. That is where the best research is posted and a wonderful place to get involved with support groups and advocacy. I have been a congressional advocate for dystonia for 11 years now and it just seems that all of us in the advocacy seem to go better and better. We are advocating for a CURE!
The more you are engaged in the Dystonia Advocacy Network, the more you learn and get better. We do not want anyone else to suffer like we do.
Most of us donate our brains for research as well as join into clinical trials. You'll find new friends that understand you and also have a lot of fun with them.
I love our group and what we do...THE CURE IS MUCH MORE IMPORTANT THAN MY LIFE WITH DYSTONIA, ANYTHING I CAN DO TO CONTRIBUTE TO THE CURE AND AWARENESS OF THE RARE DISEASE I WILL DO...JOIN IN.
Replies to "My dystonia slowly began about12-14 years ago as blepharospasm and vertical dystonia. Luckily Mayo's Jacksonvile successfully..."
I was given a tentative diagnosis last week of abdominal dystonia. When I stand erect, the abd muscles go into spasms pulling my upper body forward making it difficult to get in enough oxygen. As soon as I sit down, I can breathe better. Muscles hurt during and after the spasms. In the morning I can walk/stand erect for about 30 minutes but during the day 3 minutes is about as long as I can stand before the spasms begin. I've had this since my extensive back surgery in April, 2017. The new movement disorder specialist who I saw last week is planning to start me on Austedo (deutetrabenazine)...if insurance will cover it. He said that Botox would be considered if the medicine doesn't work or I can't find resources to provide the med. I'm 73 years old. I have PD. Nancy from SC.
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@101082101082
You are making a great contribution in advocating for Dystonia, not just for yourself but for future patients! It certainly feels good, doesn't it?
Is there anyone else in the group part of the Dystonia Advocacy Network? Would you like more information from @101082101082 as to how to get involved?
@cbuss @Kaia, @netfun2011 @kevinkelley @shenaaz @lo @paulm @ycarney @jpoffo @nissa @sweetheartsdance @tmnm @helpingh @bjmiller and @matttheschmattIs
If so, let's hear from you!
Teresa