Overview of Dystonia Dystonia is a neurologic movement disorder characterized by sustained muscle contractions, usually producing twisting and repetitive movements or abnormal postures or positions. Almost all dystonic movements share a directional quality that is typically sustained, sometimes for an instant, as well as a consistency and predictability Dystonia movements are directional, forcing the involved body part or region into an abnormal position, which is consistently present.

Do You or Your Child have a movement disorder?
Dystonia is the third most common movement disorder after Parkinson's Disease and Tremor, affecting more than 300,000 people in North America. Dystonia does not discriminate, it can affect any age group, and all races and ethnic groups. People all over the world suffer from Dystonia. Do you or someone you know suffer from Dystonia? You Can Make a Difference in Someone’s Life by being informed.

Check out Tyler’s Tyler's Hope for a Dystonia Cure,
He is a brave and courageous young man.

Ed Cwalinski's Dystonia Media Clips These films highlight me after undergoing dbs for dystoniaClick Here
Tip for you, when you are on someones page you would like to have for a friend check the box so they can see your email address and add you. They will receive an email and say yes if they wish to be a friend. ;o)


A bit about my husband Gary who was diagnosed in 2004 for Dystonia. My husband Gary had DBS in Jul of 2005 that was unsuccessful as the wires were 2ml off. In 2006 we moved back to Wisconsin and began treatment at Rush Medical Hospital in Chicago with Dr Verhagen and surgery in 2007 by Dr Bakay. I wish we would have had them from the get go. Backing up the first surgery went well, I could hardly believe it when Gary was so sharp and in good spirits. He walked in the house on his own, folowed the hospitals post-op instructions and was moving about extremely well after such a big surgery. He had both sides and the battery done in exactly 3 hours. Most of the people I met who already had DBS saw red flags and questioned the neuros weekly programming. But according to him he was the best in the area. In my humble opinion the experience was with Parkinsons and tremor but not Dystonia which was a much tougher nut to crack. Now fast forward to his 2nd surgery in Chicago. Dr Bakay is an excellent surgeon by the way and Dr Verhagen and excellent neuro along with his assistant Peggie. Gary had a few good programmings but they did not stick and Dr V felt he should have another consult with Dr Bakay. The first consult Dr B said surgery was and option but also the last resort. On the second consult pre-op and surgery was scheduled. It was a 12 hour surgery and back a week later for the battery. Dr Bakay had to remove all the old hardware (wires) and route the new ones which took a long time as the new ones kind of want to go where the previous ones were. The following week the kinetra Gary had still had a full charge but Dr B had to do some rewiring to ease the tension and pulling in Gary's neck from the first surgery. The Dr told me he did not know if it would help but the wires are in a different place. Well it did Help and we are happy about that. Now I want to address the problems Gary has had since surgery, I am happy to say he is improving. I brought home a very weakened husband. We had a home care nurse and physical therapist and later pt at our local hospital. The pt did not help but looking back Gary was 2 years older for the 2007 surgery and had not been active at all because of the blephs mostly. Of course programming had to start from scratch and before the holidays he took some nasty falls, later the Hz/ rate was lowered correcting his balance and ability to move about getting out of his chair in and out of bed etc.. But then his speech was badly impaired. So back up with the rate and the pw was lowered his speech is much better and his mobility is pretty good. He and I both feel when his eyes stay open and he can move about more the rest will fall in place oh and his neck needs to improve a bit more. Importantly he say's he feels much better. Those of you who have had programming most likely know exactly what he means. So Nancy Pam and all who are going through this just hang in there and if you don't feel your neuro is right for you go somewhere else. Please email me privately anytime if you have any questions. I am sure I missed a few details and sorry for making this post so lengthy, Hope it helps someone anyone. Sincerely, June Krahn Kenosha, Wisconsin

DBS for Dystonia support groupHelp For All

DBS Surgery support groupHelp For All

SOCIAL SECURITY DISABILITY SSI BENEFITS Click Here

Sign in to be able to view sajun's guestbook and friends list!