Dystonia has been a part of my life for so long now, that it's hard to say when it really started. I would say it has been most active and debilitating over the last 10 years I have been diagnosed with spasmodic dysphonia and paroxysmal dyskenesia. There have been numerous mis-diagnosis and many doctors who beleive that it is all in my head. For so long i felt so alone and as though I was the only one suffering from this. I knew there were others out there, but didn't know how to find them. I started out by finding others on facebook who also suffered from Dystonia and then Noel got in touch with me to join his first group and later he helped to develope the American Dystonia Society. I can't even describe what a change this has made in my life. I have a great and wonderfully supportive and they try so hard to understand what I am going through, but no one can really and truly understand until they have been there themselves. No one understands the frustration of mis-diagnosis, the ignorance of some doctors, the pain, frustration and issues when Botox wears off like other people suffering from this disease. I never knew how much I needed a community to share with and to be a part of until I found this one. I know find myself checking in with their webpages daily to see what conversations are going on. I find myself turning to people i've never met when I'm in pain or just frustrated. The friends I have made here have become an invaluable part of my life and people who help me strive to be better. They encourage me to continue going and to continue smiling no matter the pain and difficulty. I feel as though they are an extension of my family now.
The American Dystonia Society has become my lifeline into a life I never expected to be a part of and has changed mine so drastically. The talks with Noel, Denise and everyone involved has helped me feel so normal. There really are so many people who are so much worse than I am in the pain and suffering and twisting of the disease. I tune in every day to listen and express myself. Our founder is a brilliant man who gave up so much to begin this Society. He deserves to be recognized for his dedication.
My name is Joanne Schiffman. I was diagnosed with cervical dystonia in July, 2009. I had self-diagnosed 3 months prior by viewing an Oprah show about Parkinsons and Dystonia. I had never heard of or seen anyone with CD before. Not only is the American Dystonia Society bringing awareness to this rare, often misdiagnosed debilitating disease, but they are a very supportive bunch of people. I've joined in on a few teleconference calls which have proved invaluable as far as suggestions and great information. I am considering applying for disability benefits and it's been through the newly set up ADS Town Center website that I have networked with fellow dystonians and received the answers I was looking for as far as the most helpful strategies to obtain benefits (i.e. retain a lawyer, advocate or fly solo). I cannot say enough about the great work I've seen ADS do so far and I'm very hopeful that with funding for research, one day there will be a cure. Thanks for reading.
I found the ADS organization on Facebook. I expected to join the organization and read posts from time to time. I didn't realize what a big part of my life it would become. Noel provides a personal touch that many people with Dystonia need, especially when they are first diagnosed. He is never too busy to lend an ear to those in need and direct people where to go to obtain necessary information. ADS and Noel have improved the quality of my life.