Entering her senior year at the renowned Oberlin Conservatory of Music in Ohio in September 2001, Akiko Trush remembers furiously practicing a concerto by the late Russian pianist Dmitri Shostakovich when she noticed something was “off.”
“There was this octave passage that I was trying to master without making a mistake,” the 45-year-old pianist and piano teacher recalls. “I had been able to play it well before but, suddenly, I lost the grip on my right hand. At first I thought, ‘Oh, what just happened?’’’
Trush attempted the passage again, but the muscle contractions soon spread from the thumb on her right hand to her whole hand, then up her right arm and into her shoulder. After a week, her right thumb would instinctively curl into her palm when she tried to place her hands on the piano keys.
“I was utterly despondent,” she says. “Playing the piano was my life. My identity was tied to it. So having that identity rejected felt like having my entire self rejected.”
She didn’t know it yet, but Trush was suffering from focal dystonia, a neurological disorder that causes people to lose the ability to control their hands. The affliction is sudden and tends to affect adults between the ages of 40 and 60, with women three times as likely as men to develop it, according to the American Association of Neurological Surgeons. Other research puts the onset of dystonia among professional musicians much earlier, on average between the ages of 28 to 44.
On average, it is estimated to affect 1 in 50 pianists worldwide. Experts also say the percentage of people who have experienced “dynamic stereotypes,” a milder form of the disorder in which the loss of motor control is temporary and not stabilized, can run up to between 10% and 20% of all pianists.
The symptoms of focal dystonia vary. Among pianists, reactions like an individual’s thumb involuntarily sticking to their forefinger or their ring finger and little finger curling up together may occur just by moving their hand near piano keys. In response, the pianist will often force themselves to continue playing, believing the problem is due to a lack of practice — but this can worsen the condition, causing the muscles to tighten up more.
Focal dystonia has plagued some of the world’s greatest musicians such as German composer Robert Schumann (1810-56) and American pianist Leon Fleisher (1928-2020). Despite such high-profile cases, a stigma remains that has prevented many professionals with the condition from going public in fear of losing their livelihoods.
Many questions surrounding focal dystonia remain unanswered — the biggest one being how to cure it.
A task-specific disorder
It’s not just pianists who can fall prey to focal dystonia. Cases have been recorded among guitarists, those who play wind instruments or drums, vocalists, baseball players and golfers, as well as calligraphers and writers. The condition suffered by athletes is known as the “yips,” while a writer’s loss of the ability to hold a pen due to involuntary contractions of their fingers, hand or forearm is sometimes called “writer’s cramp.”
It’s called “focal” because most people lose control of only parts of their body — their hands, legs, lips or vocal cords. Additionally, those who develop it often have “task-specific” focal dystonia, meaning they can perform other physical activities with little to no challenge.
For a long time, though, the diagnosis and treatment of focal dystonia were out of reach for many due to the misconception that it was an orthopedic injury or a mental illness rather than a neurological disorder, says Shinichi Furuya, a senior researcher at Sony Computer Science Laboratories and Japan’s foremost researcher on focal dystonia. He adds that mental dystonia exists, though it affects very few pianists.
In Trush’s case, it took her more than a year to receive a diagnosis of focal dystonia. At first, neither she nor the professors she consulted knew why she suddenly lost control of her hand. Doctors, including an orthopedist and a surgeon, were all equally clueless about what was happening, and tests showed no problems in her muscles. Eventually, she was told to go see a psychiatrist.
When she finally received a focal dystonia diagnosis from Johns Hopkins University, a neurologist there asked her whether she had another career in mind, saying: “There’s nothing you can do.”
“I was distrustful of medicine,” Trush says. “I was lonely. ... I felt no one could understand me and hated everyone who consoled me by saying I should rest, hang in there or find something else to do other than play the piano.” She took a year off from school and returned to Japan.
While many pianists have task-specific dystonia and experience trouble only when playing the instrument, the affliction crept into other parts of Trush’s life. Her right hand would curl into a tight fist when she tried to shampoo her hair, pick up a toothbrush or carry a bag. If she tried to hold chopsticks, they would break in half because she could not control her muscles to use them.
Exasperated, Trush says she once considered chopping her hand off.
“I simulated the scenario in my head many times, thinking that I didn’t need a hand that was so useless,” she says.
The brains of pianists
In his 2012 book titled “Pianisuto no No o Kagaku Suru” (“Doing Science on the Brains of Pianists”), one of the first books written about focal dystonia in Japanese, Furuya explains that people with the disorder have undergone changes in parts of the brain that dictate movements and sensations.
The study of focal dystonia advanced greatly with the arrival of functional magnetic resonance imaging (fMRI) technology in the late 1990s, which made it possible to visualize the brain activities of people with the condition, Furuya says. It is now known that people with the condition see decreased brain function in inhibiting signals sent to muscles.
“When moving the body, the accelerators in the brain work too well, making it harder for the brakes to work,” Furuya says, noting that an affected individual’s neural circuit is overly excited.
Another change in the brain is the loss of the ability to process sensory information from the body. Everyone has a “map” in their brains that relates to their limbs, but people with severe dystonia symptoms experience a disordering of this map.
This results in situations where, for example, neurons for the ring finger are activated when the middle finger is touched, making people feel as if the ring finger was touched, he says.
What makes focal dystonia hard to notice early on is that the condition doesn’t hurt, unlike “chronic pain,” which is another neurological condition that afflicts many pianists, Furuya says.
Chronic pain takes place via the same mechanism as the famous Pavlov’s Dog experiment. If a piano player continues practicing after experiencing pain, the person’s brain makes a connection between the two, and the person automatically feels pain just by trying to play.
Risk factors
Intensive, repetitive practice can raise the risk of focal dystonia, but some people are more likely to develop the condition than others, according to Yohei Aoshima, 36, a neurology doctor who researches the condition and rehabilitates musicians with it. A piano enthusiast, he also developed focal dystonia in his mid-20s when he was a student at medical school.
“People who are prone to it are perfectionists who tend to devote themselves to one thing, who are nervous or serious hard workers, or who have a strong desire to play without mistakes,” he says. “In hindsight, I fit the profile (of those who were more susceptible).”
Therefore, Aoshima says pianists playing classical music are at greater risk of getting focal dystonia than jazz pianists because classical music is far less tolerant of mistakes than jazz, where players are free to improvise.
He recalls that, in the early stages of his disorder, he used to do things to aggravate his symptoms. Since his condition involved his right thumb sticking to the forefinger against his will, he wore a handmade device made of wire to separate the fingers. That didn’t help him perform better, he says.
There are no national statistics on musicians’ dystonia, but research from 2015 that surveyed 480 students of a Japanese music college found that 1.25% of the students had experienced symptoms. Aoshima says he sees more diagnoses and gets more consultations from people than before, which he partly attributes to the growing recognition of the condition.
Currently, there are three main treatment options for dystonia, but outcomes are mixed and vary from person to person. First, doctors use medication, such as muscle relaxants and anti-epileptic drugs. Botox injections are also used to reduce muscle tension.
Some pianists in Japan have even undergone brain surgery, Aoshima says. In these procedures, a patient takes a keyboard into the operating room, where doctors stimulate certain parts of their brains and identify areas where the symptoms stop. If the symptoms stop, they would burn and destroy the nerve cells there to stop the brain from overreacting.
The final option is rehabilitation. It takes time and patience, but it can work, says Aoshima.
His rehabilitation style, which he acknowledges is not yet fully backed by evidence, involves breaking down muscle movements into many tiny steps and identifying the moment when symptoms appear. He uses a certain phrase from a musical piece and asks the patient to move their fingers in slow motion as he tries to find the point where symptoms begin to appear.
The key is to find that “trigger” or “switch” and desensitize people, much like desensitizing people with allergy symptoms, he says.
“There is a point where you feel like muscle fibers are twitching, and even though there is no visible joint movement, you can feel a contraction response is beginning to occur at the level of very thin muscle fibers. You want to try to keep yourself relaxed in such a state.”
Trush says her recovery process also began with self-observation. She realized that the spasm in her right hand didn’t happen all the time but only when she thought about performing certain tasks, like shampooing her hair. So instead of moving her hand to touch her head like before, she tried moving her head toward the hand.
After succeeding in touching the head without muscle contraction, she moved to the next step of running a hand through her hair. Through trial and error, she reconstructed basic hand movements step by step. She also eased herself back into playing the piano again, starting by trying to keep her hand on the piano without having it close into a fist.
“You have to review so many things you had done unconsciously — action by action, thought by thought,” she says. “You have to analyze and become conscious of your every move.”
Trush recovered to a point where she was able to graduate from the conservatory, clearing practical tests that required a solo performance in front of faculty members. She went on to complete the graduate music program at Tulane University in Louisiana.
Today, she gives “retraining” lessons, in person and online, to people with focal dystonia. Some of her students live in Australia, Hong Kong, Israel and Germany; they contacted her after watching videos on her YouTube channel, The Mindful Pianist, where she shares her experience and advice.
“Many have had experiences similar to mine, having hit rock bottom and feeling at a loss what to do or where to seek help,” she says.
Compared with 20 years ago, when Trush struggled with her symptoms, information is more widely available on the Internet, and it’s much easier for people to share their experiences with others and decide for themselves what works best.
Still, Trush believes more professional help is needed, including psychological counseling, adding that it would also be helpful if there were a culture in which pianists who have recovered from focal dystonia could talk without fear of repercussions.
“The situation is especially dire for professional players,” she says. “At present, many professionals don’t want to talk about it even after they recover because one mention of the condition can impact their careers.”
First aid and prevention
Furuya, who began taking classical piano lessons at age 3 and experienced trouble with his middle finger while in college, went on to research dystonia at the Hanover University of Music, Drama and Media in Germany, where he still holds the post of visiting professor.
In Germany, every music college has a clinic for musicians, and neurologists are on standby to provide first aid when students have issues with focal dystonia, performance anxiety or pain due to excessive practice, he says.
“The most important thing is to discover issues early,” he says. “If it’s in a dynamic stereotype stage, you can get back to normal by rehabilitating or changing the ways you practice.”
In Japan, specialist doctors are in short supply. More cases can be dealt with early on if doctors who have music backgrounds — and quite a few of them do, according to Furuya — become interested in focal dystonia and get involved in the diagnosis and treatment of the disorder, he says.
“A patient may complain that they have their fingers curl up when they play a Chopin but not when they play a Mozart,” he says. “A doctor who doesn’t know music would have no idea what the patient is talking about. ... Doctors must know music and its characteristics so they can guess what the trigger factors may have been.”
Apart from research, Furuya runs a piano academy for children at Sony CSL under the Music Excellence Project, teaching them basic anatomy and brain science, and how to use their body to improve their performance while reducing the risk of dystonia.
Furuya, Trush and Aoshima all say that, additionally, Japan needs to address its often excessive emphasis on discipline and its rigid master-disciple relationship culture, which can worsen situations for those learning music.
“My work in Germany made me realize that people in Asia tend to associate piano practice with shugyо̄ (ascetic training),” Furuya says. “It is considered a virtue to grin and bear it when you encounter (health) issues, thinking that they would be resolved by simply practicing more.”
While the number of people with focal dystonia may be far smaller than the ranks of people with other neurological diseases such as Parkinson’s and Alzheimer’s diseases, the toll of focal dystonia is not only medical but cultural as well, he emphasizes.
“Artists weave culture. Even people talented enough to enter music university develop this condition. Since there is no established cure for it, their work of weaving culture could stop there,” Furuya says. “This is a disorder that kills culture. I want people to understand how dangerous that is.”
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