This support group is created by patients for patients in the belief that together we can make a difference in the quality of our lives.

A note from Denise

Recently I was asked what I would want to tell someone recently diagnosed with dystonia.

First and foremost I would say that I am sorry that anyone has dystonia. It is the biggest challenge I have ever needed to face. It affects so much of what I attempt to do. However this huge challenge has also given me the greatest learning experience of my life. I have learned that it is possible to train my mind and my body to function at a higher level than I ever thought possible; I have learned to ask questions and gain deep appreciation of the medical community's willingness to share their knowledge; I have learned to let go of my ego, and as I accept myself I find that others accept me willingly; I have learned that I cannot find success alone...it takes the help of a team of doctors and therapists and teachers and loving friends and family; I have learned to trust myself and communicate my thoughts more freely and in so doing I gain knowledge from others and greater understanding of myself; and I have learned to let go of "wants" because all that is important is being present in this moment.


A support group of the Dystonia Medical Research Foundation and the National Spasmodic Torticollis Association.
With thanks to the Dystonia Medical Research Foundation, the National Spasmodic Torticollis Association, as well as St. Lukes Rehabilitation Institute.