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Doublereed Archive - Posting 000049.txt from 2006/12

From: D Bogan <dblrddonna@-----.com>
Subj: [DR-L] When focal dystonia strikes musicians
Date: Mon, 18 Dec 2006 14:33:33 -0500

I found this interesting, considering Alex Klein's
affliction with this condition. dgb

Last update: December 15, 2006 – 2:48 PM

When focal dystonia strikes musicians, careers end

Dystonia, a
perplexing neurological affliction, is the
third-most-common movement
disorder in the United States, behind Parkinson's
disease and essential
tremor.

By Kay Miller, Star Tribune
Flutist Alison Young was rehearsing Mozart's
"Requiem" for a Houston
Ballet Orchestra concert in 1999. She lifted the flute
to her lips --
something she had done thousands of times -- but
couldn't remember where
to place her fingers."My hands felt like they weren't
my own," she
said.
Over time, as the movements in Young's left hand grew
more erratic, she
blamed herself. She must be slacking off. So she
practiced more. Things
got worse.
Four years ago, Young was diagnosed with focal
dystonia, the perplexing
neurological disorder that ended the careers of
pianist Gary Graffman,
Tokyo String Quartet violinist Peter Oundjian and
Chicago Symphony
Orchestra oboist Alex Klein. Pianist Leon Fleischer
played one-handed for
40 years until starting Botox injections, famously
reviving his
two-handed career at age 75.
Young saw a neurologist, rebuilt her flute, changed
her technique,
practiced slowly, underwent physical therapy and had
Botox injected into
her hands. She'd fix one problem, only to have another
creep in. Three
years ago, she quit her 20-year career as a soloist,
recording artist and
principal flutist of the ballet orchestra, where she
had been for 13
years.
Now, at 41, she's putting her knowledge and love of
music to work as a
classical music host at Minnesota Public Radio in St.
Paul.
"I didn't think I would want to have anything to do
with classical
music. The heartbreak was too extreme. It was like the
baby had died and I
didn't want to be around children anymore," she said.
"But I discovered
you can't get away from the exhilaration of music."
Like a death in the family
Focal dystonia is one type of dystonia in a huge
family of movement
disorders that affect 300,000 Americans who can't stop
their eyes from
closing or keep their feet from dragging. It can
appear anywhere in the
body: eyes, lips, head, jaw, vocal cords, neck, hands,
back or feet.
After Parkinson's Disease and essential tremor,
dystonia is the third most
common movement disorder, said Dr. Steven Frucht,
assistant professor
of neurology at Columbia University Medical Center and
a leading expert
on focal dystonia. An estimated one in every 200
professional musicians
will develop a potentially career-ending focal
dystonia.
"The emotional impact on these patients is akin to the
death of a
first-degree relative," Frucht said. "It threatens
their livelihood, their
sense of self-worth, their career, which is all tied
up with their
psyche, their social life and who they know --
everything about how they
define themselves."
No one knows what causes dystonia. Researchers believe
it is due to
abnormal functioning of the basal ganglia, deep brain
structures where
movements are planned and executed. Normally, when a
set of muscles
tightens, an opposing set of muscles should relax, if
only for a
micro-second, said Dr. Jennine Speier, medical
director of Sister Kenny
Rehabilitation Institute. "Often in people with
dystonia those muscles don't
relax," Speier said.
Instead of extending, Young's fingers would flex. She
would put one
finger down and another would pop up. Trying to
control them was
exhausting and often futile. She could finger a
difficult piece on a table top
or a pencil, but as soon as she picked up her flute to
play the same
thing, her fingers cramped.
"You can't fool the brain," Frucht said. "It knows
you're not playing
the real thing."
Somehow the brain learns dystonic behavior,
hard-wiring it into cells,
says Dr. Paul Tuite, a neurologist at the University
of Minnesota. "My
theory is that in doing a task over and over again,
somehow you're
stressing the system and it starts developing abnormal
function."
Treatment focuses on temporarily immobilizing muscles
and remapping the
brain. Speier has patients shorten their practices.
She uses Braille
and other textures to retrain brain neurons. And she
uses biofeedback,
sometimes in combination with Botox or other powerful
drugs in extremely
low doses.
"Sometimes patients will get better," Speier said.
"It's very hard if
they have to continue playing a lot."
One of her success stories, a string player from out
of state, came to
her with dystonia so bad he couldn't play. Eventually
he was able to
return to an orchestra. But it took three years of
Botox injections and
hand therapy. He now plays a very limited schedule.
Musicians often hide the condition until it's
advanced, struggling with
the question: "Am I to blame for my loss?"
They are no more to blame than a person with foot
dystonia is to blame
for walking, Frucht said. "I've seen it in people who
train an hour or
two a day. And I've seen it in people who train
obsessively for eight
or 10 hours a day."
He says that patients have a genetic predisposition
for dystonia, which
is then triggered by physical trauma, exposure to
certain medications,
toxins, infections or stroke. He suspects that
dystonia in musicians is
linked to the complexity of the task they are
mastering.
One of Frucht's saddest cases involved a promising
16-year-old trumpet
player who developed dystonia in her lips after a
trombonist ran into
her in marching band. She shifted to bassoon, which
uses a different
embouchure. Within eight months she was playing
Mozart's Bassoon Concerto.
"She was a bassoon prodigy," Frucht said. Two years
later she returned
with jaw dystonia.
"I think she was wired to get it," Frucht said.
Courage to say that's enough
In her St. Paul duplex, Young pulls out her flute,
joking that she had
to blow the dust off, and demonstrates what happens
with dystonia. Her
tone is lovely. But as she plays a passage from Bach's
A-minor Partita,
her third and fourth fingers curl back from the keys
-- like little
hiccups.
For a long time Young felt cheated. She had played the
flute with fluid
technique since she was in fifth grade. After
graduating from
Interlochen Arts Academy high school in Michigan she
got a bachelor's degree in
music from the University of Southern California and a
master's from
the Cleveland Institute of Music. She toured Europe
with the Boston
Philharmonic and played with the Atlanta, Memphis and
Toledo symphonies.
When the dystonia appeared, she was at the peak of her
career, having
traveled to Bratislava, Slovakia, to record the David
Diamond Flute
Concerto and playing concerts across Argentina and
Brazil before recording
her tango CD. She can't listen to them now. It's too
painful.
"I finally had to say, 'This is my life. I'm not
defined totally by
playing my flute. I can talk. I can teach. There are
other ways I can
engage in the world that have meaning.' I'm a pretty
strong person. I think
it takes a lot of courage to know when its time to
say, 'That's
enough.' "
Now there's much that delights: her husband, Richard
Rasch, who
encouraged her in the worst times. Their Cathedral
neighborhood in St. Paul.
Morning yoga workouts. Riding her bike to MPR's
studio. And fan letters
that already are coming from listeners.
On a recent show, Young played Ravel's "Daphnis et
Chloe." She heard
herself tell listeners how glad she was to have them
there, listening
with her.
"I realized that's exactly what I meant. This is one
of the greatest
pieces ever written. I know what it's like to be
inside the sound. Now
I've stepped to the other side of it. There's
something sort of total
about being a host."
Kay Miller • 612-673-4393 • kmiller@-----.com
©2006 Star Tribune. All rights reserved.

Donna G. Bogan
Double Your Reeds and Double Your Music--
Oboe, English horn, and Bassoon

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