Foundation is Created to Assist Musicians with Dystonia
2000 Health Care Supplement
Volume C, No. 5May, 2000
Musicians are at considerably greater risk for focal dystonia – a motor control disorder that produces involuntary muscle contractions – than the general population. But the condition is difficult to diagnose and they often go for years without realizing why they are no longer able to play.
Last year, many 802 members became aware of this condition as the result of an initiative taken by French horn player Glen Estrin, who lost the ability to play his instrument in May of 1998. In December of that year he was diagnosed with focal dystonia, or involuntary muscle spasms, of the lips and jaws. Estrin – who considers himself fortunate to have gotten a diagnosis so quickly, and to be receiving care from Dr. Steven Frucht, a neurologist at the Columbia Presbyterian Movement Disorders Clinic – asked Allegro to help alert 802 members to the condition. An article by Dr. Frucht, accompanied by an interview with Estrin, appeared in our last Health Care Supplement. It resulted in a wave of new patients for Dr. Frucht and a barrage of phone calls to Estrin.
“Many of the people who called me had suffered from performance problems for years, and did not understand the actual cause,” he told Allegro recently. “Since dystonia is usually task-specific to playing your instrument, many doctors and even neurologists have trouble diagnosing it. These musicians had consulted orthopedists, acupuncturists, oral surgeons, chiropractors, massage therapists and oftentimes psychiatrists. The average time to diagnosis is an astounding five years!”
And even when the musicians who contacted him had a correct diagnosis, “many were not aware of possible treatments or how to proceed with insurance or disability benefits,” Estrin said. “Some of them were emotionally or financially distraught, or both. Dystonia prevents competent performance on our instruments and therefore impedes our ability to make a living.”
The response to the article reinforced their sense of urgency about the need to aid musicians with this disability. Frucht and Estrin have established a foundation – Musicians with Dystonia – which has three major goals:
- To offer practical support to musicians afflicted with dystonia, including guidance in navigating the treacherous path of workers’ compensation, disability insurance and the health care system;
- To raise awareness of dystonia in the musical community and the community at large;
- To raise money to support research into the cause and treatment of focal dystonia, with special emphasis on musicians’ dystonia.
The foundation has two advisory boards, one musical and one medical. The musical advisory board consists of well-known individuals within the musical community who have lent their names and support to the organization, and will help ensure that it fulfills its first objective – to directly assist those afflicted with the disorder. The medical advisory board consists of physicians throughout the United States and Europe who have a long-standing interest in treating musicians with dystonia, and have national reputations in this field.
The new foundation is affiliated with the Dystonia Medical Research Foundation (DMRF), the largest foundation in the world dealing with dystonia, which had been searching for a way to reach musicians. Focal dystonia affects musicians in a much higher percentage than it does the general public, because of the brain-based repetitive nature of playing an instrument. “Our group, Musicians with Dystonia, proved to be exactly what they were looking for,” Estrin said.
Dr. Frucht said that one of the foundation’s major goals is “to encourage dialogue among musicians and members of the medical community about this problem. We recognize that this is a challenge for several reasons. Musicians afflicted with dystonia are often, appropriately, reluctant to share their condition with others, for fear that it will sabotage their ability to obtain employment. By the time many musicians seek diagnosis or treatment, they may be completely disabled and in extreme emotional distress.”
He points out that this can be devastating for the musician and it also has implications for a physician’s ability to treat them, since recent research suggests that early diagnosis may allow more effective treatment of the condition.
Some ways to determine whether dystonia might be the problem are listed in the box at right. (A more complete description of the condition appeared in the April 1999 Allegro; copies are available from the Allegro office.) You may also want to check the Dystonia Medical Research Foundation’s very informative web site, at www.dystonia-foundation.org. The Musicians with Dystonia section is currently being compiled and should be added soon. You can contact the foundation at Dystonia Medical Research Foundation, One East Wacker Drive, Suite 2430, Chicago, IL 60601; (312) 755-0198 or (800) 377-3978. For further information regarding Musicians with Dystonia, send e-mails to email@example.com.
SOME SYMPTOMS OF DYSTONIA
- The first signs are small lapses in the usually instinctive ability to perform on your instrument. They may show up in technical passages, usually not problematic, that become resistant. With brass players, they can often start in one register.
- Over the course of months, the performance problems become progressively worse.
- Increasing practice or taking time off does not help.
- There is usually no pain associated with dystonia.
- Pianists usually are affected in the right hand, and the spasms cause the fingers to contract and curl under when attempting to play. String players are affected primarily in their left hands and dystonia has been detected in guitarists in either hand. Woodwind players are in great jeopardy as they can develop dystonia in their embouchure or hands. Brass players are usually afflicted in the corners of the mouth and the jaw.
- Playing your instrument triggers the muscle spasms. The spasms are not present when at rest.
- Dystonia is task-specific to playing your instrument and does not usually spread to other activities. For example, pianists with hand dystonia can write with a pen or hold a tennis racket comfortably without the muscle spasms being triggered. Brass players with embouchure dystonia can usually eat and drink comfortably.
- Massage therapy, acupuncture and other methods of muscle function therapy do not usually provide relief, since dystonia is a neurological disorder.
A visit to an expert neurologist is highly recommended for diagnosis and treatment. In the New York area, Dr. Steven Frucht of the Columbia Presbyterian Medical Center Movement Disorders Clinic may be reached at (212) 305-5277.