The Beginning of ST Dystonia
Years ago before the widespread use of first, botox, and then the other toxins as they appeared on the scene, our Milwaukee Support Group was started. In fact, it was 1987 with about 25 people attending the first meeting. We enjoyed lots of success; in fact, the membership would grow to over 400 people mostly from all over Wisconsin and some from Illinois. It was the largest individual support group in the United States. For me it was “my beginning”, the beginning of my road to recovery. I had gone through 8 years of ‘HELL’ and, with the help of a Dr. Paul Nauseida, had helped organize and start our group. I did not know what to do nor who to have for speakers, but with other people’s suggestions I played it by ear and went after anybody I thought could be of help for us. We had many various speakers – neurologists, chiro’s, psychologists, yoga instructors, psychotherapists, anybody who I thought could help us. We even had a good friend of mine – a comedian – who came twice. I had been involved with AA for a while but, for me, it was not what I, myself, wanted from a group. To my way of thinking it was too serious and negative. I won’t argue with their success though; it was merely not what I had in mind after the 8 years I went through. Thus, I wanted to hold light-hearted meetings, fun meetings, lots of laughs and good times.
Start of Our New “Positive” Philosophy
I wanted the meetings to be very positive. We would hold not only some serious meetings but also lots of fun meetings. 4 times a year we would have a meal where people would bring pot luck dishes. St. Patrick’s Day was always a popular one. In fact, one year I cooked 4 corned beef briskets ahead of time for sandwiches and brought them to the meeting the next day. One Christmas meeting I dressed up as a Santa Claus. Can you believe I didn’t even have to stuff a pillow in me.
In summer we would have picnics complete with free bratwurst, wieners, hamburgers, beer, soda and to complement that everybody would bring one pot luck dish. One summer we had 7 picnic tables laid out end to end with nothing but pot luck dishes on them. What a gourmet delight. In addition we would have a 3 piece band playing plus games for the kids like water balloon fights. That was my favorite. Those picnics attracted, in the beginning, over 400 people, people from all over Wisconsin and Illinois and even 2 couples from Iowa. It was a great outpouring of people and friendship and gave all of us a chance, at least for one day, to be relaxed and with people who understood one another. Isn’t this what support groups should be like.
A New Day for ST’rs
When the toxins came in and, though they are a big, big help to all of us, they took the sparkle out of the groups and people no longer seeked help anymore. Thus, most all groups have dried up considerably, but there is still a big need as there are still plenty of ST’rs out there who crave help. And above all, building awareness is more important than ever now. That’s why we’re here and that’s why we want to replicate the success the Milwaukee Support Group had…only this time we’re worldwide and reach out in a big way through the internet and our web site. We want to mix this site up with fun, humor, treatments, trivia and whatever comes to mind. You’ll also get information on events and our incredible annual symposium. We hope you’ll want to contribute, also, through suggestions to make us better and articles depicting your own experiences. You see, we consider ourselves part of a big ST family and want nothing more than to give you an organization that makes you feel like you belong. We’re here for you and wide open to listening. Come join us and please remember, YOU ARE NOT ALONE.
I've found your web site the most helpful of them all. The way it's written really has helped me. Kristi, New Zealand