Musicians with Dystonia Bulletin Board

Even when I try now, I am not capable of duplicating my symptoms. They were purely, 100% involuntary motions that I don't think anyone can imitate. They were spasmodic, rhythmic movements beyond the normal realm of human motion; difficult to describe.

In the beginning I was so devastated and ashamed of my bobbing head, wobbling lips and the hidious sounds emanating from my horn bell, I only allowed one person to even hear it over a telephone consultation. I isolated all my horn playing in my practice room for 7 months until I felt I could play well enough for my symptoms not to be noticeable in a large noisey ensemble. (BTW, I'm now confidently preparing a chamber music gig -- Dvorak's Serenate in D minor -- and the director says if he hadn't known I'd had a problem, he would NEVER have guessed it.)

Well, there was one other person who heard my worst playing on a daily basis and that was my kind and supportive spouse. He was kind enough to never comment until I had improved substantially. Then he simply remarked, "Good playing today."

I'm angered by the volume of negative misinformation presented as fact about embouchure dystonia being: incurable, untreatable, impossible to recover from, career terminating, etc. I believe it's wrong and an impediment to recovery.

Lest anyone misunderstand, I'm not claiming that everyone with embouchure dystonia can do what I've done in 7 months. But IMHO, there are enough examples of individuals with embouchure dystonia who are now playing well again that the "dystonia experts" should update their messages to reflect a more positive prognosis.

No musician with dystonia should believe recovery is hopeless just because some self declared "expert" says it is.

Valerie