For release: Wednesday, December 8, 2004
“There is always hope,” said internationally renowned classical pianist Maestro Leon Fleisher during a recent visit to NIH to give thanks—in performance—for the innovative treatment he received at NIH and to the NINDS physicians and scientists who helped to reverse his condition.
One of NIH’s inspirational stories, Fleisher spoke to the standing-room-only crowd of scientists, patients, staff, and visitors, gathered in the Masur Auditorium in Building 10, about his experiences with a common, but little known, disorder called dystonia—including his eventual diagnosis, his treatment at NIH, and his recent comeback to two-handed performances. He then played 2 selections—Chopin's Nocturne in D flat major and “Sheep May Safely Graze" from Bach's Cantata No. 208—from his new CD titled Two Hands.
Fleisher began studying the piano at age 4 and gave his first public recital at age 8. He made his debut with the New York Philharmonic in 1944 at the age of 16, and went on to perform solos as well as making regular appearances with orchestras on some of the world’s most acclaimed concert stages.
Forty years ago, the three-time Grammy nominee lost the use of his right hand to what was then an unexplained ailment. He was only 35 years old at the time, and at the height of his career. For nearly 30 years after those early frightening days, when he first noticed the 4th and 5th fingers on his right hand involuntarily curling into his palm, he searched for a diagnosis for his condition, and more importantly, for treatment.
“It was the beginning of a great odyssey of hopes and disappointments,” said Fleisher. “I tried everything from aromatherapy to Zen Buddhism.”
At the thought that he may never again play piano with two hands, Fleisher fell into what he calls “a state of despair and depression” that lasted nearly 2 years. He continued, however, to express his love of music by teaching, conducting, and playing one-handed repertoires. He also continued to search for treatment for his condition.
Dystonia—the third most common neurological movement disorder, affecting 300,000 people in North America—is characterized by involuntary muscle contractions that cause twisting and repetitive movements or abnormal postures. The movements, which are sometimes painful, may affect a single muscle; a group of muscles such as those in the hands, arms, legs, or neck; or the entire body.
“I am a dystonic and I will forever be a dystonic. I don’t have a 12-step program,” said Fleisher. “They don’t know what causes dystonia and they don’t, therefore, have a cure. But they can alleviate the symptoms to such a degree that they helped me to restore my life again.”
After several misdiagnoses and years of frustration, in 1991 Fleisher was properly diagnosed with focal hand dystonia—a form of dystonia that afflicts about 10,000 musicians worldwide but can strike anyone who uses his or her hands to perform repetitive tasks. He was then referred to NIH, where he entered a clinical trial led by NINDS scientists Dr. Mark Hallett, Dr. Barbara Karp, and Dr. Zoltan Mari. Finally Fleisher found lasting relief.
That relief was in the form of botulinum toxin which is injected into the muscle at the neuromuscular junction (where the nerve and muscle meet) and acts as a sort of muscle relaxer, relaxing the tension in the muscle.
According to Hallett, who serves as the chief of the Medical Neurology Branch, NINDS, when Fleisher first arrived at NIH his hand was quite curled. “He had difficulty in even washing his hand. So the first goal with botulinum toxin was to see if we could open up the hand enough so he could wash it better,” said Hallett. “Then, of course, he began to try playing the piano. Gradually, with time, he began playing more and more and the music got better and better.”
Since receiving treatment, Fleisher has resumed playing the piano with both hands and has been performing with various symphony orchestras such as the Vienna Philharmonic, the Chicago Symphony, and the New York Philharmonic. He recently made a solo return to Carnegie Hall, where he played both two-handed and left-handed only works.
Additionally, Fleisher also now serves as a spokesman for “Freedom to Play,” an educational program set up by the Dystonia Medical Research Foundation to raise awareness of dystonia. He travels the world attending meetings and medical conferences, and visiting music schools, to educate students, doctors, and musicians about the disorder.
“My reaction when first faced with this disorder—which is not an uncommon reaction—was to work harder, which is the worst thing you can do. I warn musicians about this,” said Fleisher. “I warn them to treat themselves as athletes of the small muscle. They make extraordinary demands of the small muscles of their hands and fingers.”
He also encourages students and his fellow musicians to exercise properly and to seek medical advice at the first sign of trouble. According to Fleisher dystonia is still not a very well-known disorder, even among the medical community. “I deem my activities to be of a certain import,” he said.
-By Shannon E. Garnett
To view a video of the performance and Mr. Fleisher's remarks, click this link:
Last Modified November 13, 2013