[Dixielandjazz] Focal Dystonia

[Stephen G Barbone]

Most musicians on the list probably know of a peer who suffers from  
focal dystonia. If so, this article will be of interest. Also of  
interest to Glenn Gould fans.

Cheers,
Steve Barbone
www.myspace.com/barbonestreetjazzband

A Disorder That Stops the Music

NY Times - March 14, 2012 - By JAMES R. OESTREICH

Just because you’re a hypochondriac, to paraphrase Joseph Heller’s wry  
comment on paranoia, doesn’t mean you aren’t sick. And the brilliant  
Canadian pianist Glenn Gould was, in a phrase uttered at a medical  
conference over the weekend, “a world-class hypochondriac.” He was  
also a perfectionist, easily frustrated.

“Opening theme of Casella was unbalanced, and notes appeared to stick,  
and scalelike passages were uneven and uncontrolled,” Gould wrote in  
his diary about his 1977 performance of Alfredo Casella’s “Due  
Ricercari sul Nome B-A-C-H,” taped for television.

“During the next two weeks problems increased,” he added later. “It  
was no longer possible to play even Bach Chorale securely — parts were  
unbalanced, progression from note to note insecure.”

In 2000 Dr. Frank R. Wilson, a neurologist, suggested in a paper,  
“Glenn Gould’s Hand,” that Gould had a problem little understood in  
his time, least of all by him. Today, though it is by no means fully  
understood, the disorder is called focal dystonia.

Dr. Wilson read a condensed version of that paper on Saturday at the  
Grand Hyatt New York during the two-day “Musician’s Summit” presented  
by the Dystonia Medical Research Foundation and its program, Musicians  
With Dystonia. In those diary entries Dr. Wilson said, Gould “was  
telling us what dystonia feels like at the outset.”

Dr. Wilson spoke of Gould’s “hand that does not easily widen” and  
noted that his “middle and ring fingers keep close company.” To judge  
from the photographic and video evidence Dr. Wilson offered, he was  
referring mainly to the left hand, though when questioned afterward,  
he said that it wasn’t entirely clear whether Gould himself was  
concerned with one hand or both.

Despite the conference’s title, it was dominated not by musicians but  
by medical specialists in dystonia from the United States and Germany.

The problem is by no means new. The 19th-century composer Robert  
Schumann was mentioned in passing on Friday for his fingering  
difficulties at the keyboard, and his case was analyzed more closely  
on Saturday in a historical survey by Hans-Christian Jabusch, the  
director of the Institute of Musicians’ Medicine at the Hochschule für  
Musik Carl Maria von Weber in Dresden.

After a number of unsuccessful remedies, Dr. Jabusch said, Schumann  
simply “avoided dystonic moves.” Dr. Jabusch cited Schumann’s Opus 7  
Toccata, which “hardly used the middle finger of the right hand.”

Isolated instances apart, what brought hand dystonia to prominence  
were the devastating cases of Leon Fleisher and Gary Graffman, two of  
the brightest lights of a stellar generation of American pianists, in  
the 1960s and ’70s. Each lost control in his right hand; both  
continued to play works written for the left and developed major  
careers in education. Mr. Fleisher, after decades of strenuous effort  
and treatment, regained control of his right hand and has resumed  
performing with both hands.

The research foundation defines dystonia as “a neurological disorder  
characterized by involuntary muscle contractions and postures.” It can  
be generalized or focal, meaning that only a certain part of the body  
is affected. The foundation cites estimates that 1 to 2 percent of  
professional musicians are known to be affected, almost all of them  
classically trained and most of them male.

Eckart Altenmüller, the director of the Institute of Music Physiology  
and Musicians’ Medicine at the Hanover University of Music, Drama and  
Media, provided numbers from his research, saying that in a group of  
instrumentalists with dystonia, 93 percent were classical musicians,  
and 81 percent were male. Part of the problem of being a classical  
musician, he said, is that “you have to hit the target exactly” every  
time. The problems of being male he didn’t specify. Other risk  
factors, he added, are general anxiety and perfectionism of the Gould  
variety.

Musician’s dystonia most commonly affects the hand, causing fingers to  
curl under or jut out inappropriately. It occurs not only among  
pianists but also among string and woodwind players, guitarists and  
percussionists. In addition, brass and woodwind players are  
susceptible to embouchure dystonia, which may cause the lips to  
tremble or the jaw to lock, or otherwise affect the face, mouth and  
tongue.

There seems in many cases to be a genetic predisposition to the  
disorder, and its physiology is centered in the brain. That much,  
though not too much more, I was able to glean from the highly  
specialized discussions of DYT1 and DYT6 genes and brain imaging on  
Friday.

The Saturday sessions were generally more graspable for a musically  
inclined nonscientist. The morning talks, apart from the fascinating  
Gould discussion, were mainly devoted to a survey of the many forms of  
treatment that have been tried, some with notable, if seldom 100  
percent, success.

They include physical rehabilitation and retraining, sometimes with  
the aid of splints or other devices; various medications (marijuana  
occasionally among them); and, most promising, it seems, injections of  
Botulinum toxin, commonly known by the trade name Botox, manufactured  
by Allergan, which provided educational grants for the meeting.

Injections of the toxin, David M. Simpson, a neurology professor at  
Mount Sinai School of Medicine in New York, explained, cannot control  
muscles directly, but can calm adjoining and opposing muscles,  
allowing greater freedom and control. The effects, which are often  
highly positive for musicians, can last three to four months at a time.

The afternoon sessions on Saturday were given over to musicians, some  
of whom had performed at a concert on Friday night, as did Steven  
Frucht (another neurology professor at Mount Sinai and a founder of  
Musicians With Dystonia) and members of his family. (My appointed  
rounds took me instead to a Boston Symphony concert at Carnegie Hall.)

Those addressing the problems of hand dystonia included Billy  
McLaughlin, an acoustic guitarist, and Ryan J. Thomson, a multistyle  
violinist, both right-handers who suffered debilitating symptoms of  
dystonia and retrained themselves to play left-handed. (The German  
early-music violinist Reinhard Goebel did the same, but he has since —  
like Peter Oundjian, the former first violinist of the Tokyo String  
Quartet and now music director of the Toronto Symphony Orchestra —  
devoted himself mainly to conducting.)

One of the performers, the classical guitarist David Leisner,  
electrified the proceedings with his challenge to the research  
foundation’s claim on its Web site that “there is no cure for dystonia  
at this time.” Mr. Leisner claims to have cured himself and led many  
others to a cure.

He overcame the disorder, he said, by learning to apply the larger  
muscles centered in the armpit rather than the smaller ones in the  
forearm. This jibed with Dr. Altenmüller’s observation on Friday that  
the performers least at risk were those who played large instruments,  
like the harp, double bass and cello.

A final session, devoted to embouchure dystonia, produced harrowing  
tales from two former tuba players and a former French horn player,  
Glen Estrin, who with Mr. Frucht founded Musicians With Dystonia in  
1999. It has been “amazingly rewarding work,” Mr. Estrin said, and  
“the increased awareness of the problem is stunning.”

Indeed, just a few decades ago, who knew?