What are the symptoms of dystonia?
When you have dystonia you feel like you can’t control your muscles, and the harder you try the worse it gets. There are many different kinds of dystonia which may affect a variety of body parts. In musicians, it can manifest itself in the fingers or the embouchure. If a pianist, for example, has finger dystonia, one of the fingers will curl up whenever its neighbor is used. In my case, the muscles of my embouchure would lock up, prohibiting air to escape and causing late entrances, cracked notes and, basically unreliable playing.
What causes dystonia?
Nobody knows for sure what causes dystonia, but I suspect it involves a number of factors including, but not necessarily limited to: misuse of one’s body; genetic predisposition; poor technique; and obsessive personality. Not everyone who encounters chop problems develops dystonia; some people are able to work through difficulties and resume playing with little or no problem. Those who develop dystonia seem to be unable to solve chop issues without spiraling down into more serious complications.
Who is at risk for getting dystonia?
Dystonia typically strikes players in their mid-30’s who generally have not encountered serious playing difficulties. These players are usually naturally gifted musicians, tend to be perfectionists, and can sometimes be obsessive about practicing. There are most certainly exceptions to these qualifications and, in fact, I believe there must be an “x” factor – a genetic predisposition. If there weren’t, then everyone who misuses their body would get dystonia, and this simply is not true.
How can I avoid getting dystonia?
Be smart about your playing. Learn the truth about how we are built and how we are designed to move. To minimize your chances of getting an injury of any sort, learn to play without tension in your body. Play with awareness of how we are built and how we are designed to move. Do not equate music-making with athletic activity and do not strain to play.
How can I recover from dystonia?
I was able to do it through a cocktail of therapies, not just one magic bullet. My cocktail included movement therapies such as the Alexander Technique, Feldenkrais, and Body Mapping. I also redefined how I think about playing and refined how I move to play. I cultivated global awareness and the ability to play trombone with my entire body.
Is dystonia common?
It is unclear how many cases are out there because it’s not always accurately diagnosed, and those who have it are not always forthright about their condition.
How did you know you had dystonia?
At first, I didn’t. As a matter of fact, getting diagnosed can be a big challenge because it is not a common disorder that a doctor might see regularly and recognize. I ended up at my primary care practitioner who was smart enough to send me to a neurologist. From there I was referred to a neurologist specializing in problems of musicians: Steven Frucht. Dr. Frucht works at Columbia Presbyterian Hospital in New York City and offered to watch a video of me playing. By observing the video and reviewing a thorough medical questionnaire, he was able to deliver a diagnosis over the phone. He also referred me to Dr. Richard Lederman at the Cleveland Clinic, who I saw in person; was able to confirm Dr. Frucht’s assessment.
How did you know when you were finally better?
When one is rehabilitating from a condition like this, there is a constant search for anything that might help. Some things I tried did not help at all and some things seemed to help temporarily. One of the hardest things was deciding which therapies genuinely helped enough to pursue beyond a week or two. There was not a well defined turning point for me, but rather, a slow but steady feel that I could start to do things I couldn’t before. Once I could begin to play in front of people without encountering a spasm, I knew I was going to be OK.
How did you know what to do to retrain yourself?
A lot of trial and error and willingness to try anything, even if it seemed unlikely that it would help.
Who helped you retrain?
Jan Kagarice (re-establishing proper breath support), David Nesmith (Alexander Technique and Body Mapping), Donna Lilley (Feldenkrais), Barbara Conable (Alexander Technique and Body Mapping).
What do I do if I have dystonia?
You have to figure it out for yourself. Do not count on the doctors, your old teachers, famous brass pedagogues, or good friends to tell you what to do. Your retraining program will be different than mine because we are different people. The strategies on this page simply provide a menu of options that happened to work for me.
Will everybody who tries these strategies get better?
Almost certainly not. This condition is so very specific to individual circumstances that there is no way to predict the effect of these activities on each individual. That’s one of the challenging attributes of this situation: one can’t simply prescribe a therapy and guarantee its success. In fact, very few musicians manage to recover fully from dystonia.
How long will it take to retrain?
It took me approximately two years. I have heard of many others who never get better. Sadly, those who recover fully are in the vast minority. This doesn’t mean, however, that you shouldn’t at least give it a try.
What should I do about warming up during my retraining period?
Don’t think of practicing in the traditional way. Every time you play, you must play in the new way—no exceptions. If you try to play in front of people, you will greatly slow down the process. With this in mind, there is no need to think of an official “warm-up” period.
How do you know these strategies will work for others?
I don’t. I am sharing these ideas in the hope that they will stimulate dialogue about this mysterious condition and provide basic information to those who might need it.
Why are you so open about what you have been through?
I don’t mind sharing my story because it might help others to hear it. I believe the strategies I used to retrain are beneficial to all players, not just the ones who are injured. That’s why I started Mountain Peak Music: to promote the health, wellness, and efficiency of all musicians.
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