isa 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.
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.
At first, I thought I could practise my way out of the problem. Each morning, I pretended all was well. Then I would try to play. The hand spasmed and shook with barely a touch to the instrument. Had I forgotten how to play? Days went by, then weeks.
Farias is a passionate guy. Get him going, and he will talk for an hour about how the brain connects our movements, emotions and thoughts. He is 50, compact, fit, and seems perpetually on the go. Our several conversations were squeezed into his intense patient care schedule and work on expanding the platform. I caught him, on one call, during a brisk walk in his native Spain. For him, the mystery of dystonia is understanding inciting events, the shock that kicks off a dystonic response. His life work focuses on uncovering common threads, and finding a unifying theory, regardless of the dystonia type.
During the height of the pandemic, I attended a Zoom seminar he hosted, along with, among others, a 19-year-old cellist from the Juilliard School in New York who has a deranged vibrato and an uncooperative fourth finger, a professional classical guitarist with a frozen curled pinky, a 35-year-old IT specialist who was forced to type with only her index finger, and a 17-year-old high-schooler whose illegible scribblings could be accomplished only by moving her entire arm. All were under the care of a neurologist and had been through one or several courses of BoNT injections. I was the relative newcomer with a year of dystonia; others had had it as long as 10 years. The seminar toggled between sharing stories and Farias working with each of us, masterclass style, peeling back layers of compensations and disordered movement patterns. When you were not the one under his scrutiny, it felt like watching brain surgery from an observation deck.
If I were an elite athlete, I would be surrounded by a multidisciplinary treatment team: a psychologist, a physiotherapist, a massage therapist, and a doctor. Musicians are often compared with athletes, but that may be lip service where the medical team is concerened. For musicians, it is often catch as catch can, and treatment approaches diverge when dealing with injuries, Dtri explains.
For one thing, a dystonia diagnosis is often shrouded in secrecy, as if naming it out loud will cause it to morph from a ghost-like malady into a doppelgnger, wreaking havoc on professional careers. Musician training relies heavily on the master-apprentice model, in which musical knowledge and technique are passed to a trainee like a holy act. Relationships with music teachers can be intense and exclusive. Pedagogy is delivered without much quality control. Music educators are rarely taught functional biomechanics, and often use their bodies to demonstrate correct positioning and stance, regardless of the physical particularities of a student. Orchestras and other professional musical settings rarely serve as a point of access to team-based care for an injured musician.
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