DYSTONIA: Maestro Gets A Second Act

[Murray Charters <mcharters@xxxxxxxxxxxxxx>]

DYSTONIA: Maestro Gets A Second Act
Pianist Fleisher touts treatments for disease that shackled his right hand
The Alameda Times-Star, CA
By Melissa Schorr, STAFF WRITER

Article Last Updated: Tuesday, May 04, 2004 - 9:51:42 AM PST

FORTY years ago, pianist Leon Fleisher was a superstar in the classical music 
world.

But while preparing to go on tour with the renowned Cleveland Orchestra, he 
noticed a strange sensation in his ring and
pinky fingers. Within 10 months, he had lost complete control of his right hand 
-- and potentially, his professional
career.

At the time, his symptoms mystified doctors. Fleisher reluctantly abandoned his 
recording and performance career,
resorting to teaching, conducting and, eventually, playing left-hand only 
concertos.

But today, he has made an almost impossible comeback, thanks to newly developed 
treatments for his disabling disease, a
common neurological disorder known as dystonia.

At the American Academy of Neurology's annual meeting last week in San 
Francisco, he was honored for bringing
heightened awareness to the disorder.

"My life has been something of a soap opera, I guess," he joked to the hundreds 
of assembled neurologists.

After accepting the Public Leadership award, he strode to a concert-sized black 
Steinway piano hauled down to the
Marriott ballroom for the occasion, and sat, pausing a few moments for effect.

Then, he effortlessly launched into Bach's melodic composition "Sheep May 
Safely Graze," fingers dancing over the keys,
and followed up with an encore of several Brahams' waltzes from Opus 39. Only 
an expert would notice any lingering
evidence of dystonia -- his right pinkie, still curved like a grande dame 
sipping high tea with the queen.

"He's the Seabiscuit of pianists," declared his agent, Lisa Altman of Smash 
Arts in New York. "It's an amazing story of
perseverance."

San Francisco prodigy

Fleisher, 75, was born in 1928 at Mount Zion Hospital and raised in San 
Francisco through age 9.

At age 4, he began taking piano lessons. "I don't remember the time I wasn't 
playing," he says. "I'm the result of a
very serendipitous coincidence: My mother's hopes and desires coincided with 
the talents I had as a youngster."

At age 16, he debuted at Carnegie Hall with the New York Philharmonic in 1944. 
From there, his career took off.

In 1964, at age 35, just as he was about to go on a tour of Russia with George 
Szell and the Cleveland Orchestra, he
was stricken with the

earliest signs of his disorder.

"I began to notice my fingers began curling under," he said. "Within 10 months, 
they refused to obey my commands."

He sought help from specialists, but they had not yet even named the problem, 
let alone know how to deal with it.

"As they say in Greek

mythology, when the gods go after you, they know where to strike," he said 
wryly.

He was misdiagnosed with repetitive stress injury. It would be decades until 
doctors determined that Fleisher had
developed focal task-specific dystonia, a neurological disorder causing 
involuntary muscle contractions that often
affects those who perform repetitive movements over long

periods of time, such as musicians, typists and surgeons.

"It was a pretty despairing time for me. I didn't want any one to know," he 
said." He sunk into a two-year depression
that affected both his career and marriage.

Eventually, Fleisher says, he realized he was deeply connected to the music, 
"which was not limited to playing the
piano," and threw his energy into teaching and conducting.

He also nurtured an ability to perform using only his left hand, performing 
pieces such as Ravel's left-handed
concerto.

Throughout this time, he continued seeking diagnosis and treatment. "I had 
tried eastern medicine, western, southern,
northern, everything under the sun," he recalls. "I was given L-dopa (Levodopa, 
used to treat Parkinson's disease),
pot. It didn't help."

In the early 1990s, Fleisher learned of a clinical trial testing botulism 
toxin, or Botox, for focal dystonia offered
at the National Institutes of Health in Bethesda, Md.

He was skeptical, but within days he found spasms of his right hand receding. 
"Suddenly, my fingers were staying
extended as I desired them to," he said.

In 1995, for the first time in 30 years, he performed Mozart's Piano Concerto 
in A Major with the Cleveland Orchestra
using both hands. In April 2000, he was the first living pianist inducted into 
the Classical Music Hall of Fame.

Today, Fleisher's schedule is jam-packed: a performance in Baltimore, a week of 
teaching at Lake Como, performances in
Toulouse, France, and back to the New York Philharmonic in three weeks, marking 
his 60th anniversary since his debut.

He and his wife, Katherine Jacobson, a teacher at the Peabody Conservatory of 
Music at Johns Hopkins University and a
former student, often play four-handed concerts together, and he plans to make 
his first recording with both hands
since his recovery.

Fleisher is also participating in a worldwide tour organized by the Dystonia 
Medical Research Foundation, called
Freedom to Play, to raise awareness of the propensity of musicians to develop 
dystonia and its potential treatment.

"My mission, and I do accept this, is to go out and speak to young musicians, 
of which

10,000 are suffering from a form of dystonia," he said. "I hope to warn young 
artists of the danger of mindless
practicing, of 'pumping ivory,' and that there are ways of dealing with it that 
were not around 30 or 40 years ago."

In a sense, science moved too slowly for Fleisher. At the suggestion of this 
sad reality, he sighs and removes his
glasses.

"I'm afraid this answer might sound Pollyannaish, but the condition has forced 
me into an awareness of my true
connection to music," he says. "Had I continued with success as a two-handed 
pianist, I would not have become the
teacher or the conductor I have become. The act of sharing one's vision has 
produced moments of ecstasy. I'm not sure
if I were in a position to change my life that I would."

You can e-mail Melissa Schorr at mschorr@xxxxxxxxxxxxxxxxx or call her at (925) 
416-4814

Reference:

Dystonia Medical Research Foundation (DMRF)


Musicians with Dystonia Bulletin Board


Musicians with Dystonia Bulletin Board
Important Announcement - Freedom to Play


Maestro Leon Fleisher is joining the Dystonia Medical Research Foundation 
(DMRF) this month to launch Freedom to Play


Freedom to Play Launch Makes National News


AAN 2004 Public Leadership Award goes to Leon Fleisher, musician who overcame 
dystonia


Celebrate Dystonia Awareness Week: June 5-12


SOURCE: The Alameda Times-Star, CA
Article Last Updated: Tuesday, May 04, 2004 - 9:51:42 AM PST


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