The recitatives of alternative/complementary medical practices– including Rolfing® Structural Integration– that did not cure dystonia victims went on and on. It was the second day, and in the afternoon 8 musicians described their experiences with diagnoses and treatment of their dystonia afflictions. Nothing in the standard medical practice cured them either, only one musician claimed to be completely cured, and that through his own initiative in retraining himself.
Better to just avoid getting dystonia, you say? The distinguished panelists, led by Steven Frucht MD, Professor of Neurology and Director of the Movement Disorders Division of Mt. Sinai Medical Center in New York, New York, couldn’t find much hope there either.
There seem to be several emerging factors. Misuse syndrome and bad genetics are being investigated. An early start, say at age 4, seems to be protective of developing dystonia.
A number of panelists were from Germany, which leads the world in full time orchestra numbers and has a health care system which provides for documentation of musicians’ disorders. One conclusion one of the male German panelists made was that one in 200 musicians will get dystonia and that of that number, an overwhelming number were male. (German orchestras are still very misogynist, and he didn’t mention that fact.)
One form of treatment is an inhibition of chronically contracted muscles. A doctor from the French company IPSEN represented a botulinum toxin version that is used in Europe. Botox™ from the ALLERGAN corporation is the name commonly known in the United States for this toxin. The toxin, which is one of the most toxic known, must be stored in an inactive form and activated. Proprietary ways of doing this distinguish the 2 companies. Using the toxin for hand and lip dystonias is an off-label use, and can cost the patient up to $2800 for each injection, 2 or 3 times a year.
Because I had some knowledge of Dr. Frucht’s work, when the notice of this meeting came across my desk I undertook the 2 days of commuting to New York. I was hoping to hear more of treatment possibilities that might be on the horizon, and I did. Musicians are a small portion of a larger dystonic population, but Dr. Frucht believes they are like the canary in the coal mine in that they provide extreme sensitivity to change, much more than other generalized dystonic patients.
Dr. Frucht provided a video overview of the dystonic patient world which was worth the price of admission for me. Many kinds of dystonias exist (1/3 of them genetically related), and he showed some of them. His remarks about the repertoire of focal hand dystonias included what was almost a throw-away of a view of the repertoire of the focal hand dystonia, the resemblance to “baby babbling” gestures. In combination with some remarks later by Christine Klein MD of the University of Luebeck that “she would like to do more work on the pre-movement phase of movement” I found that good food for thought on the retraining of movement of the hands.
And retraining is just about where it is at for the moment. Some clues exist: jugglers get really good when they don’t make the same toss every time. Providing alternatives and sensory re-training can be done, in some cases.
I wish the news were better, but it is just not that great, yet, though distinguished minds are working on it, as evidenced in this Foundation meeting at the Grand Hyatt Hotel in New York last weekend.