To the tune of dystonia

Fernando Kaskais

Sep 30

Photo by Harry Allan Papendang/Getty

One day, my hand stopped speaking to my brain. As a doctor and flute player, I had to understand this strange affliction

is a palliative care physician who served as the director of palliative medicine at Stony Brook University Medical Center in New York. She now works as a health policy and educational consultant for the National Center for Equitable Care for Elders at Harvard University, and as a medical and arts freelance journalist.

'All movement has a direction, and that direction obeys a motivation that is accompanied by an emotion.'
– from Limitless: How Your Movements Can Heal Your Brain (2016) by Joaquín Farias

The morning after performing the concert of my life, I could no longer play the flute. The pinky and ring fingers of my left hand failed to cooperate with what my mind wanted to do – I couldn't work the keys. The harder I tried, the more my fingers curled into a claw, stuck in spasm. Even stranger: no other activity was affected. I could type on a keyboard with the same facility as usual and play scales on the piano with unimpeded finger action.

The concert, the capstone of my master's degree in historical performance at the same university where I'd worked as a palliative care physician until 2019, was in March 2020 – among the last before the COVID-19 lockdowns. My weird finger problem seemed small compared with the unfolding pandemic.

I initially opted for self-diagnosis, starting with a medical process called a 'rule-out'. For instance, I ruled out a stroke. Otherwise, why did I have symptoms only when I played? I ruled out an injured hand. I couldn't remember hurting or straining it. I had no pain, no history of arthritis, and no wrist, arm or shoulder movement limitations: no numbness or tingling. I could air-play an invisible flute with virtuosity; only a real one induced the symptoms. My other hand worked fine. I felt well.

So I ruminated on other possibilities. Had my brain-finger circuity become unglued or rewired? What was the origin of the spasming – my hand or my mind? Was this an issue of age? Of nerves? I found myself confronted with a problem that my background as a physician could not make sense of.

From another musician, I learned that my experience was not unique. This trusted colleague speculated I might suffer from musician's focal dystonia. I was embarrassed that I had never heard of it. I soon discovered that I might have a disorder that has plagued some of the world's most famous musicians. The 19th-century German composer and pianist Robert Schumann was thought to have dystonia, based on his letters to friends, and used a weighted contraption to strengthen a rogue finger. In his diaries, Glenn Gould, known for contorted body postures at the keyboard, described symptoms in his left hand and arm as if writing the definitive dystonia textbook. And Leon Fleischer, after years of misdiagnosis and a right hand frozen into a claw (he played the piano with one hand instead!), brought worldwide attention to dystonia in musicians as never before.

The term 'dystonia' is rooted in the Latin prefix dys, or difficulty, and tonus, meaning tone or tension. It refers to involuntary disruptions in muscle tone that cause spasms and shakes. It has been divided into many categories and subtypes, depending on the body parts affected and the age of the person when it began.

Primary focal dystonia affects specific muscle groups and does not connect to an underlying medical problem. It seemingly comes out of nowhere, and otherwise healthy people have it. Persons can experience, for instance, an imbalance in the neck muscles called cervical dystonia or torticollis. The neck pulls in one direction while the opposing muscle, usually working to keep our gaze forward, stays inert. Imagine a situation where your neck is drawn to the right against your will whenever you speak or walk.

Task-specific focal dystonia is related to repeating a physical action, like trilling a note on a keyboard. Smaller muscles working in refined ways seem most vulnerable. The precise movements characterising the muscle actions of archers (target panic), tap dancers, runners, hairdressers, golfers (the yips), musicians, and computer programmers are found among people living with dystonia. Musicians seem particularly susceptible: as many as one or two in 100 are affected, usually professional players in their 30s or 40s.

I thought I could practise my way out of the problem. Then I would try to play

I was a musician long before I was a doctor. Returning to the flute was a gradual build, rediscovering long-dormant musical chops. My skills were dusty but acceptable and, to my delight, I was welcomed into the music community at the university. I play the baroque flute, a light and airy instrument with a woody hollow sound whose heyday was 17th- and 18th-century Europe...

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https://aeon.co/essays/dystonia-plagues-musicians-and-has-no-easy-remedies