Focal Dystonia: A Violist's Perspective
Dystonia is a neurological movement disorder that can cause muscles to involuntarily contract, resulting in uncontrollable movements. For musicians, focal dystonia or focal task-specific dystonia often affects muscles that are used for repetitive movements. Musicians can suffer from focal dystonia in the fingers or hand, embouchure dystonia, or even dystonia of the vocal chords.
I first noticed symptoms of focal dystonia in 2011. My ring and pinky fingers would involuntarily pull in towards my palm, and I would accidentally pluck the strings. I also noticed my ring finger wouldn't lift as quickly as I wanted it to on descending scales. For both issues, I thought that I just needed to practice harder, do more technical exercises, and relax my hand. When I had a quartet recital coming up and couldn't make my fingers work despite practicing as much as possible, I finally saw a doctor and went to physical therapy. After googling my symptoms, focal dystonia came up, but when I asked my first physical therapist about it, she said it couldn't possibly be that. My PT sessions ran out, but nothing really improved. I continued to blame myself, my technique, and continued to practice harder. Finally, it all caught up to me. I was super tense and anxious because I couldn't play, and I was creating all kinds of extra tension trying to make my fingers work. My ring finger and pinky were curling in and my forearm was killing me after just a few minutes of playing because of the tension. I had to stop playing in the orchestra and figure out what was going on.
Over the course of 2 years, I saw 3 orthopedic surgeons with 3 different diagnoses, 3 physical therapists, 2 massage therapists, and a chiropractor, all with only minor temporary improvements. Finally, my last 2 physical therapist, who were amazing but still couldn't fix me, recommended I see a neurologist. I knew at that moment that it was focal dystonia. I waited weeks for my appointment at the Cleveland Clinic. After a thorough exam and seeing my symptoms while playing viola, the neurologist confirmed my suspicion of focal dystonia. I was waiting for him to tell me of this great new amazing way to treat it, but his outlook on my treatment was pretty grim. He said I could do Botox injections, but they really don't work unless you can find someone to help retrain the hand to use the correct muscles. I asked about playing right-handed and had actually already borrowed a student instrument to do this, but he said I could develop the same symptoms in my right hand. I asked about drugs, but he said there was nothing that would help this enough to play.
I decided that there must be someone doing research and looking for a cure, and I found them at the University of Michigan. Again, I had to wait about 6 weeks for an appointment. I saw a general neurologist who (again) diagnosed focal dystonia, but then referred me to a dystonia specialist. Another 6 or so weeks... In the mean time, I was trying Acupuncture, Alexander technique lessons, and had a body mapping lesson. When I finally got to the last appointment, all they had to offer was Botox. Really? No one will help me retrain? I had also heard that Botox could cause lasting side effects on my muscles, and that wasn't a risk I was willing to take.
I tried another acupuncturist and tried a chiropractor-neurologist. Nothing was helping enough to make a difference. I even gave up coffee, gluten and dairy. The jury is still out as to whether or not this is helping, so I (mostly) stick to it. Apparently, gluten is processed in the same part of the brain as dystonia. As for coffee and dairy, I don't understand exactly why, but two different specialists recommended it and I'm desperate!
As all of this was going on, I would try to play a little bit each day. Some days, I would only last for about 2 minutes because the symptoms were too bad or I would just break down because I really wanted to just play some Bach, not try to make my finger lift up or keep it from curling in. On good days, I could play for about 10 minutes.
Focal dystonia has affected many musicians, most notably pianist Leon Fleischer, who had focal dystonia symptoms in his right hand for many years. He began to regain movement in his right hand more than thirty years later. Other musicians with FD include violinist Peter Oundjian and pianist Glenn Gould.
Finally, I found a doctor in Canada, Dr. Joaquin Farias, who works with musicians who have dystonia. I have heard of many people starting to recover and who make full recoveries after meeting with him and following an individualized recovery plan. So, I made an appointment. This last January, I went to Toronto and met with him for 4 days in a row. He analyzed the movements of my hand and gave me exercises to help retrain the correct muscles to start working again. Within 2 days, I was able to play simple pieces. A lot of recovery is 2 steps forward, 1 step back, sometimes 3 steps back of 5 steps forward, but now I have hope.
I try really hard to accept whatever state my playing is in and look at any issues like a puzzle. It not only helps me make progress, but it helps me stay positive. I have learned that even on bad days, I am still making progress, even when it doesn't show. Recently, I had two weeks of bad days and then reluctantly went to practice. I found that my hand was working better than it had in at least a year. It still comes and goes, but I keep making new discoveries that help me to move forward.
I am still teaching private lessons, but my students and I have learned to have successful lessons without me having to demonstrate very much. My students listen to their pieces at home to enable them to guide themselves when learning new music, I use YouTube when necessary in the lessons, and I can use my right hand to play on the piano when needed. I have also been taking classes to become a certified Montessori teacher in a 3-6 year old classroom. I am learning tools through my classes and in the classroom that help my teaching in general, despite my lack of playing. It's been a learning process and very frustrating at times to teach without playing, but I'm grateful to still be able to work with kids who love music. I do think everything I'm learning to help my dystonia get better also helps me understand my students' challenges and be able to break things down better for them.
Aside from viola and violin, my focal dystonia only really interferes with typing. I have mostly typed things on my phone with my thumbs since last January. I have ninja-like skills :) I have become healthier by trying to take care of myself with enough sleep, healthy food, less caffeine, etc., and in trying to not be consumed by not being able to play. It helps to focus on other cool things I'm doing and the progress that I'm now making.
One thing I'm focusing on is raising money for dystonia research by running the Glass City Half Marathon on April 26th. If you'd like to check out my fundraising page or make a donation, click here! Any donation would be greatly appreciated!
While focal dystonia is not fun, it is not a death sentence. I do believe that someday, I will beback playing. I've gotta "Just keep swimming, just keep swimming" :)