You May Not Have Known: Musician’s Dystonia

Written by: Jimmy McQuade

Date: July 11th, 2014

Dystonia may not be a term you’ve come across before, but it’s the third most common movement disorder, next to essential tremor and Parkinson’s disease; and about 300,000 people in North American suffer from one form of dystonia or another. According to a 2012 fact-sheet from the Dystonia Medical Research Foundation, “Dystonia is a neurological movement disorder. Improper signaling in the brain causes the muscles to contract and twist involuntarily. These muscle spasms may force areas of the body into awkward positions or movements. Dystonia may interfere with daily activities, and some forms of dystonia may be painful.”

But the term Dystonia is sort of a catchall, used to classify a whole slew of very specific movement disorders that can affect numerous parts of the body. There’s, for example, spasmodic (or laryngeal) dystonia, which affects muscles associated with the vocal cords, making the simple task of speaking (not to mention singing) increasingly difficult; there’s blepharospasm, which causes the eyelids to either blink uncontrollably or remain shut – imagine driving with such a condition; and there’s generalized dystonia, which causes cramps and contortions in a number of body parts at once making even the most basic movements troublesome. Each form of this neurological disorder can be debilitating in its own way, but what I want to focus on here is task-specific focal dystonia, or, colloquially, musician’s dystonia.

Task-specific focal dystonia is not necessarily specific to musicians, per se – the word focal denotes dystonia affecting a single, isolated part of the body and task-specific means that the dystonia is related to the completion of a particular task or type of movement. But because musicians naturally move a particular body part in a very repetitive manner, they are generally associated with this form of dystonia.

At the onset of musician’s dystonia, a player may wrongly perceive his or her inability to perform what would otherwise be instinctive on an instrument as the result of bad technique or inadequate practice. The types of musician most associated with musician’s dystonia are pianists, guitarists and brass players. Pianists and guitarists generally suffer from dystonia in the hand, which, according to the Dystonia Medical Research Foundation, “is characterized by involuntary, abnormal movements in the hands and/or fingers…. Symptoms of hand dystonia may include subtle loss of control in fast passages, lack of precision, curling of the fingers, fingers ‘sticking’ to keys, involuntary flexion of the thumb in strings, and tremors.” While brass players are generally affected by embouchure dystonia, which “targets muscles in the mouth, face, jaw, and tongue,” and includes “air leaks at the corner of the mouth, sometimes accompanied by a tremor, and involuntary contractions of the muscles in the face.”

What causes musician’s dystonia, or any other type of dystonia for that matter, is still unknown. Genetics, past physical trauma, exposure to certain types of medication, and other neurological conditions, it is believed, all may have something to do with the onset of dystonia, but the actual biochemical processes generating these symptoms remain a mystery. And while there is no known cure, dystonia may be treated in a number of ways that are usually tailored to the needs of each individual case. A neurologist may treat dystonia with anything from surgery and Botox injections to daily relaxation and breathing techniques.

I asked Beau Monde’s own Lou Bottone to answer a few questions about his own struggle with focal dystonia. Here’s what he had to say:

How and when did you discover that you had focal dystonia?

I noticed the onset of dystonia around the time I turned 21 years old. While in college, I was working in a cover band playing three to four nights a week. I can remember being at a gig, in the middle of playing the solo for Van Halen’s “Hot For Teacher,” and my fingers completely tripping over themselves. I immediately knew something was wrong.

Not being able to physically play the instrument you spent years learning and loving must have taken its toll psychologically. Can you describe how focal dystonia affected your psyche as a musician?

For most musicians their instrument is an extension of themselves. I had been playing guitar since I was 11 years old, it was my identity. It took a huge psychological toll on me. I was obsessed with finding a cure although I knew there was none. Focal Dystonia is a death sentence for a musician.

How did you go about treating it?

Before being properly diagnosed I sought numerous alternative treatments. I tried everything from massage therapy to acupuncture and physical therapy to chiropractic care. I even entertained hypnotism. After almost three years of searching for an answer I met with an orthopedist who recommended a neurologist conduct an EMG. The test results were negative, however it was suspect of dystonia and I was referred to see a specialist at Columbia Presbyterian in NYC. Once my diagnosis was confirmed the methods used for treatment were splint immobilization and Botox injections. Unfortunately for me, these treatments yielded no results.

What is the state of your focal dystonia today? Have you figured out a way to live with it?

My dystonia seems to have plateaued. It does not seem to be getting any worse, but it is definitely not getting any better. I have tried to retrain the brain using sensory tricks such as finger splints and latex gloves, but I find as I get older I have less time to devote to the instrument. I have learned to accept my dystonia and am glad I can still be involved with music in some capacity.