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Mixed Signals

Mixed Signals: A Conversation with Jean Alexis Smith

By Robert Schulslaper 

 

Mixed Signals:
A Conversation with Jean Alexis Smith

 By Robert Schulslaper 

Music is as natural to humanity as speech and should flow as freely as birdsong. But what happens when that flow is impeded? That’s the problem pianist Jean Alexis Smith faced when her ability to play was gradually compromised by focal hand dystonia, a serious neurological condition. For this interview, rather than discuss her latest CD, Bach in Transcription (see the appended reviews), she’s chosen to recount her up-hill struggles with this still-mysterious ailment: It’s an important, informative, and ultimately inspiring story.

Although most of our conversation will be devoted to your experience with focal hand dystonia, would you first tell us something of your life in music before its onset?
I was raised in a church that was very active musically and though I didn’t go to concerts, music was important, and my parents tried to find us the best teachers they could. My mother wanted all of her four children to be able to play hymns for the church services, so I began piano when I was eight years old with a very good piano teacher. I also studied the flute with a former principle flutist from the Dallas Symphony Orchestra, and later I studied flute at the conservatory in Salzburg. At the time I never considered a career in music. 

My third year in college I heard a performance of the little A major Chopin Prelude by the chairman of the piano department. The performance was absolutely stunning and I decided to just take an hour’s credit of piano with him. He heard me play a Clementi Sonatina and told me he’d flunk me unless I practiced four hours a day in the room next to his studio. That completely changed my life. I suddenly found direction. At the end of the school year, he convinced me to go back home to California and study with Alexander Liebermann, assistant to Egon Petri. I stayed at home and practiced and at the end of the following year Liebermann sent me on to New York, and I went to Juilliard where I studied with Irwin Freundlich. 

While I was studying at Juilliard I performed in a master class given by Guido Agosti in Sienna and fell in love with Italy. As soon as I finished with a Bachelor of Music degree from Juilliard I left for Rome. There I studied with Carlo Bruno for three years. Upon my return to California, I studied with Adolph Baller at Stanford University while I got my Masters degree in piano performance.

For those who don’t know, what is focal hand dystonia?
Focal Hand Dystonia (FHD) is a movement disorder. It is characterized by persistent or intermittent muscle contractions causing abnormal, often repetitive movements, postures, or both. It typically affects people who rely on fine motor skills—musicians, writers, surgeons, etc. It is thought that the excessive motor training those skills require may contribute to the development of the dystonia.

Focal dystonia is very serious, and the dysfunctional movements are obvious and most resistant to any attempt to correct them voluntarily. It has the tendency to spread from the specific movement when playing the instrument to general daily-life movements. For instance, FHD can extend from typing on a computer keyboard to buttoning up a shirt, and in the end may lead to permanent cramping of the hand. FHD can also spread from one hand to the other. 

FHD is generally “task-specific,” meaning that it is only problematic during certain activities. For musicians, various symptoms can mark the beginning of the disorder: subtle loss of control in fast passages, finger curling, irregularity of trills, and task-specific tremulous movements.

Classical musicians have the highest risk of developing focal dystonia. At first, most musicians believe that the reduced precision of their movements is due to a technical problem or lack of practice. And as they intensify their efforts, this only exacerbates the problem. The probability of developing FHD also depends on the instrument played: pianists, guitarists, and brass players are most at risk for developing dystonia, and research has shown those pianists who began early in life are at a much lower risk, than those starting after ten years old.

When did you first notice that your hands weren’t behaving as they should?
I don’t know when the FHD began. For some time I thought I just couldn’t help wanting to “shoot myself in the foot.” I didn’t know why. I kept searching my character flaws. I’d suddenly bang out a note that should have been soft, and blame myself for losing my focus and not paying enough attention. 

In 2005 I was finishing the recording of the Chopin Nocturnes numbers 1 through 13. For some crazy reason I just couldn’t play the ending flourish of the Op. 9, No. 2 in E flat major, one of the easier nocturnes. I had taught this nocturne so many times, and given my students technical ways to control the color, crescendos, diminuendos, accelerandos, etc. and now I was absolutely unable to do it. What was my mental block?! I was so upset I came back to the hall a month later with my sound engineer to record just that run. Again I was unable to do it. After spending too long agonizing over it at the hall, and feeling absolutely desperate, I finally divided the flourish between the hands and pretended the coda was its own thoughtful little piece. Now the coda sounds quite acceptable to me.

Meanwhile my fingers on the right hand had started numbing and not functioning as I wanted consistently, and they seemed to be getting weaker and shaky. I went to the most highly respected neurologist in the Bay Area to see what was wrong. He talked with me for about three minutes and said I had an impingement of the ulna nerve, but more important, I also had Focal Hand Dystonia. When I asked him what that was, he gave me a strange smile and said, “Go home and look on the internet.”  His assistant told me that he thought my problem was not that serious, and with therapy I could release the tightness around that ulna nerve and get back to playing normally.

l went home and found FHD on the internet and immediately agreed with the assistant that all I needed was to fix the ulna nerve impingement. FHD looked so devastating that I couldn’t even begin to imagine I could have it.

Was therapy helpful?
I worked with a physical therapist on loosening the tightness around the ulna nerve three times a week for many months. I even wore these attachments on my shoulders at home that would blink red every time I tensed my shoulders during the day, and it was amazing how much more conscious I became of my posture and tension in my shoulders. The numbness subsided, but the weakness and shaking persisted in my fingers. So the therapist gave me exercises including squeezing tennis balls and clay with my fingers to build finger strength. But I didn’t seem to make much progress.

When my therapist moved away I went directly over to the University of California, San Francisco Physical Therapy Department. I worked with them for a while, and then they sent me about a month later to the chairman of the neurology department. He had me do all kinds of tests, like slapping my hand palm up and then palm down on my knee as fast as I could, but I could only accomplish it a few times before my hand would fly off my knee. He showed me how strong my fingers were. They were simply getting confusing messages from my cerebral cortex that were causing the shaking and weakness. In short he said, my problem was not with my hands, but with my head. I felt relieved for a minute, thinking a good psychiatrist could fix me, but then the UCSF neurologist said it wasn’t a mental illness as such. I had damaged my cerebral cortex and now had FHD. 

When I told him I needed to record the 14th through the 21st Chopin Nocturnes in a month, he just simply shook his head and said there was no way I could do it. I would have to forget playing the piano seriously as there was no cure. He was very sympathetic, and hoped I had family and friends to help me through this. Nevertheless when I left his office he did mention I might see Dr. Nancy Byl in the Physical Therapy Department at UCSF. 

I left his office totally devastated. My head went blank. I tried to process what he had said, but I simply felt helpless and numbed. I didn’t even make an appointment with Dr. Byl. Finally I asked myself what I was going to do for the next month that I had set aside to prepare for the recording. I couldn’t think of anything but keep preparing to record. The worst that could happen would be that I would cancel the recording and lose the money for the hall reservation.

I spent the next month just trying to imagine what was transpiring between my hand and my cortex. I did all these “individualization of the finger” exercises and was shocked to find out how difficult it was to name the correct finger by number out loud while I played it. For instance, I would command the third finger to play, but strike the fourth finger. Even when playing scales it was really hard to connect finger with number out loud. 

I made up exercises for turns, octaves, arpeggios while saying each finger out loud. Things that were impossible in my music at the proper tempo I simply played so slowly that I could name the fingers while looking at them and playing. It seemed to straighten out my head temporarily and also stop the shaking and weakness in my fingers.

Although you had some positive results, were you still searching for answers?
I looked up every treatment for FHD I could find. No one claimed a cure, but there were suggestions that botox, massage, hypnosis, and the Alexander Method, which I had been doing in physical therapy, could help. I visited a few places that claimed they had amazing results and one place even claimed they had cured Leon Fleisher. I knew that hadn’t happened. Botox seemed like the only solution to doing the recording, but the possible side effects were too much to risk.

So with the incredible commitment and assurance of my sound engineer and editor (to whom I will remain forever grateful) we went ahead with the recording a month later. Their devotion to the project was much of what enabled me to finish all the Nocturnes, all except for the final flourish of Op. 55, no.1. It was impossible for me and I finally slammed down the lid of the piano, and just quit.

At that point, my sound engineer insisted we would not quit that evening until I had mastered that flourish. After a lot of resistance I finally agreed to work on the eight measures for an hour, even though I knew I couldn’t succeed. I went through naming each finger by number slowly, and when my sound engineer returned in an hour we nailed it on the second try. The relief was overwhelming. That was the last time I’ve played that nocturne. The recording of the Chopin Nocturnes was finished!

I quit playing for a few months, and then went to the Physical Therapy and Rehab Department at UCSF to meet Dr. Nancy Byl. I owe everything to Dr. Byl. I will always be indebted to her for her brilliance, intuition, and spirit. When I walked into her office she just grinned and said I fit the perfect profile of a musician with FHD. I was passionate about what I did, obsessive compulsive, a perfectionist, and I was at the “top of my game” when it hit. She told me she was conducting a workshop for professional musicians with FHD at the beginning of the year. I remember entering the room with all this exercise equipment and four other professional musicians. As the other musicians were not new to the class, I immediately assumed, in denial again that I would have it easiest as I hadn’t had FHD very long. Well, it turned out that I had by far the worst problems of anyone else in the class and was the only one who got Dr. Byl’s undivided attention from the beginning to the end of the four days: The others were mostly helped by Dr. Byl’s assistants.

Everything for me was just hopeless. Walking on a treadmill blindfolded while tossing a ball at the same time was ridiculously impossible, so we switched to only walking blindfolded on the treadmill, but I needed two people just to keep me on it, to say nothing of keeping a steady pace. I had practically no balance. I was unable to participate in any group activities. Dominos covered with cream were impossible with my eyes closed. I couldn’t feel the dots at all. 

Writing my name with one hand while looking at it in the mirror, and duplicating the moves in the other hand was like trying to write the Greek alphabet backwards. I simply wrecked a nice wood finish on a tabletop by running off the paper across the desk with my ink pen, with the hand I couldn’t see. Identifying quarters from nickels and pennies in a bowl of beans was impossible. I couldn’t begin to feel which coin was bigger. 

The last day, still not knowing what I was supposed to be accomplishing in the workshop, Dr. Byl told me that she had figured out the root cause of my FHD. My visuospatial function was nearly non-existent. And that’s what had caused the FHD. All those practically impossible, seemingly unrelated tasks I was trying to do had made the diagnosis clear for Dr. Byl. All these years I had always relied on my eyes to direct my hands and fingers at the piano. Because my fingers were now playing faster than my eyes could follow, my cerebral cortex had economized, mapping fingers 2, 3, and 4 together. So my fingers became totally confused and were unable to follow the cortex’s directions. I had no idea I was unable to find the keys without looking at my fingers. I left the workshop grateful that there was an answer. In the meantime, I had an appointment with the first neurologist I’d seen the previous year, and he shook his head, wished me well, remarking it had to be like retraining Tiger Woods from the ground up.

Following the workshop, Dr. Byl asked me if I would be a participant in the UCSF Brain Functioning experiments. I immediately said yes, thinking how interesting that would be, only to suddenly realize that they were choosing me in particular to take all these $5,000 plus experiments because I had a serious disability! My feelings flipped to total depression. I had a real problem. After all this, I still had been in denial.

The next year was difficult. I simply didn’t know how I would continue playing the piano, though it never occurred to me to quit. I only mentioned it to a few friends, who sympathized as they had experienced “tennis elbow” or carpal tunnel problems. They didn’t have a clue. I didn’t tell any of the music community, feeling no one would really understand. I really just wanted to crawl into a cave.

Then the College of Marin asked if I could teach the Repertoire and Performance class for a professor taking a sabbatical. I thought about it awhile, afraid I’d make a fool of myself, but then I decided to go ahead and see if I could explain everything I wanted to, by simply articulating it, rather than sitting down at the keyboard. It turned out to be a wonderful experience for me, because it kept me engaged with the world, while having a great time with the students who kept me in touch with my love for the piano and music. 

I went to Dr. Byl’s physical therapy gym at UCSF three times a week, usually staying for an hour and a half. Dr. Byl would go from a patient with Parkinson’s to someone recovering from a stroke, and then return to me. I recall doing the Brain Fitness Program DVD—a scientifically based set of brain exercises devised by Dr. Michael Merzenich of UCSF that are based on neuro-plasticity, the ability of the brain to change, adapt and even rewire itself—on the computer while riding a stationary bike. It would drive me really to the edge of insanity. By pushing myself that hard Dr. Byl would say I got the most out of the exercise, and I was doing this while participating in the brain experiments at UCSF, which could be really trying.

For example, one experiment would show me a green dot with the word “red” above it, and I would hit the green button as fast as possible before the next dot would appear. I had to use the same right hand fingers, index finger for green, third finger for yellow, and the fourth finger for red: Impossible to get my correct finger to the right color.

I recall mumbling to Dr.Byl one day that I didn’t see why she spent any time with me when there were people there with such debilitating problems that really needed her. She shot back at me saying that I was as important as everyone else there, and I must never minimize the importance of the arts!

I recorded the time I spent on each exercise every day, and reported it to Dr. Byl. I remember her asking me how I felt numerous times, and trying to be positive, I would say I was feeling much better, only to have her reply that I was really very depressed, still.

Dr. Byl assigned me books to read, and I highly recommend The Mind and the Brain by Jeffery Schwartz, M.D., and Sharon Begley. And also Brain Rules by John Medina. 

I spent three to four hours a day at home starting with a forty minute meditation CD on visualizing my healing process, then aerobic exercise, followed by work away from the keyboard, and writing with my right hand (I’m left handed). I worked on building my spatial perceptions. One of my lowest times that year was when I realized that with my eyes closed, I could not even feel the difference in the pattern from two to three black key clusters. Every key felt the same distance from the next. 

I worked with my eyes closed, dropping on my thumb from twelve inches above the keys onto C to D over and over till I could feel the distance, then C to E, and when making progress there, going up an interval of a fourth, fifth and so on…then starting on the index finger I’d do the same, then with the third finger and so on…to the same with the other hand….then dropping combinations of fingers up and down a scale. Finally two hands doing intervals together. This helped stop the shaking of my fingers. I velcroed an electronic keyboard and practiced on it to bring back the sensitivity to each finger. I taped my fingers most of the day to bring my individual finger sensations back.

I worked playing on my finger pads instead of on the tips of my fingers—playing on the pads gives the finger more surface contact—not only at the piano but on the computer where I’d lost total finger control also. I typed with one straight finger only for a long time so my fingers would not curl and shake. I practiced big arm strokes to write, and practiced household tasks, learning to relax while using a knife or holding a glass in a relaxed position. After that first year, I started playing again carefully, finally able to do so without shaking.

Then I had the most amazing breakthrough. Everyone at the musician’s workshop had been given the first book of Braille as a way to sensitize the fingers. I had dismissed it because it seemed quite easy for me. I figured if it wasn’t difficult it certainly wouldn’t help me. When Dr. Byl suggested I try it again, I got out my Braille book and became just fascinated. It was a new language. It was a whole new dimension added to my world. Before long I’d finished the first book, which no one they were treating had ever done before. Braille requires a level of sensitivity in the fingers I never would have imagined possible. I was having fun! And I believe Braille is what really sped up my progress. By the end of the first book I could read all punctuation marks, italics, brackets, asterisks, count to a thousand in Roman numerals, read recipes (though it hasn’t improved my cooking) and stories, etc.  I could make a shopping list, balance my checkbook, and I even started corresponding with a very nice blind man in prison. (I assume my Braille wasn’t good enough for him to explain to me how he got there.) My husband would come into a dark bedroom and find me reading in bed. I could read stories to him while driving down Highway 1 and looking at the view. He did tire of hearing about Ray the taxi driver and his problems, for instance, or how Elias Howe came just short of suicide when his house burned down while he was inventing the sewing machine. While reading more fluently by repeating the stories, I wore down the indented cells of my Braille book. I could hardly wait for Dr. Byle to get me the 2nd and 3rd books.

While learning to read Braille I was led into the world of a blind person. There were stories written for those who had been blind only a short time. So I found out the easiest way for Joe to make it to the 8th seat of the 14th row of the concert hall. And about Jane, who was being given all these clues, from cracks in the sidewalk to smells of a eucalyptus tree, so she could go independently to her friend Beth’s house for the first time. But perhaps most important, I discovered that a blind person has just as rich a life as anyone else. Just the magnified sensitivity to the environment alone, which most of us can never experience, is unbelievable.

I’ve gotten to a point where my symptoms are mostly alleviated now, so I haven’t kept up my Braille. But I need to take the time to return to it. I must add that the Braille was also great for my sense of self.

Has current research into FHD led to hopes for a cure?
Thirteen years ago, when I first found out I had FHD there didn’t seem to be that much research and information I could find. When I look on the internet now I see so many musicians who have suffered with FHD, and word has gotten out that we who have it need to speak loudly. Some say they have indeed found a cure, though everyone emphasizes that you must be very patient, because it will take some time.  

There are many theories now about how FHD happens. Dr. Postolos Paraskevas, a Grammy nominated composer and classical guitarist, Professor of Composition and Classical Guitar at Berklee College of Music in Boston, was struck by Focal Dystonia to his right hand in 2009. He fully recovered in 2013 after seven thousand hours of work in re-constructing his technique. He was able to decode the condition as an unconscious behavioral habit and returned to performing professionally again. He has written a book called A Classical Guitarist’s Story of Recovery from Focal Dystonia. He says, "My personal story shows that FD does not start in the brain; it starts in the hand...My approach is based on one simple but underappreciated fact: You can send messages from your hands to your brain. Your hand sends the wrong signals to your brain. It tells your brain, thousands of times, that tension is necessary for specific movements...you're always training your brain...So perhaps for instance, you have an old injury to the hand and because of it, you are unknowingly playing with excess tension. Your fingers can’t make compensatory adjustments anymore and the problem becomes neurological. Now the brain is sending the wrong signals to the hand...For a permanent cure, you need to address the problem where it starts: in your hand movements.” Though Paraskevas feels he has recovered, he says “I am continuing to experience progress on a daily basis now.”

Dr. Joaquin Farias, director of the Neuroplastic Training Institute in Toronto and Adjunct professor at the University of Toronto at the Music and Health Research Collaboratory, believes the brain retains everything. One just needs to provide the proper pathway for the brain to reconnect with the memory. The Farias Technique is a noninvasive, natural movement therapy. He believes if we want change, we must change the way we look at the problem. The therapist needs to be inside the head of the patient and look at how he’s interacting with the environment. For a dramatic demonstration of his technique in action, watch Dr. Farias’ Harvard lecture posted on YouTube; it’s truly amazing and I highly recommend it. He works with an eighteen-month old boy who is walking sideways and backwards and has head and neck dystonia. Dr. Farias is able, by observing the world through the child’s eyes, to eliminate the dystonia and in a short time the child is able to move normally.

Farias believes if the “Hypo-opposing function” (weak opposing function) is stimulated it can normalize the activity of the “hyperactive” dystonia symptoms. Farias stresses the patient must reconnect to life as it was before. Isolation leads to anxiety. Also very important is that the patient must heal him or herself. Nobody else can. Bring back your passion and it’ll take you out of the depression. Also, it can be difficult to know if you’re “swimming down deeper or coming up,” so a therapist is the lifeline for the patient.

Many musicians on the internet believe that FHD began with their emotional state. They had been experiencing a huge amount of stress and tension. Once they were able to remove as much stress as possible, relax and seriously observe their movements they began to see progress, but it is slow and they stress the real need for patience.

Studies have shown that individuals with higher strain scores, self- described as feeling overloaded, and constantly confronted with difficult challenges at work and/or personal life are more prone to FHD. They are more likely to express emotional instability and exhibit a lowered frustration tolerance. They more often displayed anxiety and depression. These findings emphasize the importance of recognizing non-motor symptoms in patients with primary focal dystonia. 

Dr. Nancy Nies Byl stresses that treatment is re-education. The goal is to restore the normal somatosensory representation of the hand by decreasing stress, stopping the abnormal movements, and learning stress-free hand techniques. This needs to be coupled with becoming physically fit, well hydrated, eating a balanced diet, getting a reasonable amount of sleep, and managing stress. In addition she emphasizes mental practice and imagining the central nervous system controlling your hands and fingers with minimal demands on the musculoskeletal system.

In his autobiography, Leon Fleisher, perhaps the most famous pianist afflicted with FHD, mentions consulting Dorothy Taubman, who claimed she could help him if he would reconstruct his technique according to her principles. It’s my impression he eventually declined her offer, although he may have worked with her for a while.
I’ve never read Fleisher’s book, but as I recall, in 1964 Leon Fleisher lost the use of his right hand and was eventually diagnosed as having FHD. In 2004 I believe Fleisher was able to ameliorate his symptoms with botox injections to the point where he could play with both hands again and his first “two-handed” recording since the 1960s was released. It is called Two Hands.

Fleisher, of course, concentrated on the left hand literature for a long time before releasing that record. Sadly I believe his recovery was short lived. 
I remember an interview with the New York Times in 2007 in which Fleisher said, “I would like to make it clearly understood that I have not been cured of FHD. A way has been found to ameliorate the symptoms.” I don’t know if Fleisher ever studied with Dorothy Taubman, but I doubt her technique could really get to the depths of the problem for a pianist of Fleisher’s caliber.  Let’s hope he’s doing well now.

Have you tried the Taubman Technique yourself?
Part of my recovery with Dr. Byl at UCSF was to study the Taubman Technique. At first it seemed like the answer to playing the piano. It did help particular aspects of the dystonia, it certainly improved my octaves and weight distribution, but I think just about any approach has limitations for the individual. The Taubman Technique works with Alignment, Balance, Movement, and Retraining. Relaxation and nothing forced or pushed is a very important part of her approach.

Did you experiment with other purely pianistic approaches?
I feel that pianistic approaches and methods usually aren’t geared to the professional pianist. I don’t think a great pianist ever gave a certain pianistic approach credit for how she or he played, citing instead the totality of their experiences with influential teachers whose personalities, philosophies, and insights made a lasting impression. It seems many techniques or methods insist that their way of moving the wrist, hand or elbow will help you make “Music” instead of just playing the piano. In the end, either the “music” is communicated through the performer or it isn’t, regardless of their particular technique. That’s my experience.

Do you know if Gary Graffman suffers with focal dystonia or are his difficulties caused by something else?
Some time ago I did yoga with a friend of Gary Graffman, who said Graffman had a finger sprain to his ring finger on the right hand (which may have been a trigger for FHD, though I knew nothing of FHD at the time). Because of this injury he began re-fingering some passages for that hand in such a way as to avoid using the affected finger. Unfortunately this seemed to exasperate the condition. However, this explanation seems very simplistic to me.

Speaking of the ring finger on the right hand, Robert Schumann injured that same finger while working on the technique needed to become a great pianist. He could very well be the first known case of FHD. In his letters to Klara Wieck, his future wife, he talks of the emotional turmoil. “It often grieves me, especially here in Vienna, that I have a disabled hand. And to you I will admit that it grows worse and worse…stumbling with one finger after the other. It is quite dreadful, and has already caused me much distress.” (Hans Gal, The Musician’s World: Letters of the Great Composers.)

Then there are the ones who have not been so lucky.

Noel Emerson was an English musician and composer, famous for his work in writing rock arrangements of classical music. He died in March 2016 of a self-inflicted gunshot wound to the head. Emerson’s girlfriend said he had become depressed, nervous and anxious because nerve damage had hampered his playing, and he was worried that he would perform poorly at upcoming concerts in Japan and disappoint his fans.

Alex Klein, Chicago Symphony principle oboist, was forced to quit in 2004 due to FHD, which had begun within two years of his assuming the first chair. During a tour of the Far East with the orchestra, he found his fingers would not allow him to play at his finest level and he resigned. In 2016 he was once again appointed principal oboe of the Chicago Symphony but was denied tenure as a result of not passing the mandatory probation period. 

Is there a greater incidence of this syndrome among professional musicians than throughout the general public?
Approximately one percent of musicians develop FHD, a rate about ten times greater than for non-musicians. (Neurology, 2013 August 6: 81(6): 589-598). More recent studies vary slightly, according to the study and what factors they include.

Is there any connection with repetitive stress syndrome, another condition often afflicting musicians?
I don’t think so, though repetitive stress syndrome can have a range of causes. It is often related to nerve damage from non-ergonomically designed workspaces, or forceful activities.  But with repetitive stress syndrome there is always pain with the loss of sensation or strength, and usually there’s swelling and inflammation of specific muscles or tendons, unlike the symptoms of FHD.

Are both of your hands equally affected?
No. My right hand was the only one for many years, but then the left hand 5th finger started coming down hard on a note that was meant to be very soft, like at the ending of a piece of music. When this started happening I immediately went to Dr. Byl, and showed her a video of a performance and she showed me that it was not the 5th finger, but the 5th trying to cover for the 4th finger that had the problem. So I started working on the left hand more. But the awareness of what had happened was the most important thing learned. Because I choose some difficult repertoire, I usually have to deal with FHD in one way or another.

I’d say you’re dealing with it very successfully: Certainly anyone hearing your CD would never suspect that you have any inhibiting physical infirmity. 
Thank you. I recently watched Leon Fleisher play a wonderful Bach recital on YouTube and noticed his curling fingers in the right hand while playing the Bach/ Petri Sheep may Safely Graze. He subsequently did a magnificent performance of the Chromatic Fantasy and Fugue. What I found fascinating was that he picked the perfect piece for FHD. The Fantasy passages fall into three or four finger straight scale patterns, either up or down. (The most natural hand movement from finger to finger is 5,4,3,2,1. It just falls in.)  When Fleisher could, he often divided long scale-like passages from hand to hand. The Fantasy is filled with arpeggios and declamatory passages which give no problems. Then the Fugue is also built on these three and four-note scale-like motives. The problems for me when playing come when there’s a passage that’s like a 2,4,5,3, or a 5, 2, 3,5 that repeats over and over. I can feel a strange jumbling on the upper right side of my head now when I just think about it. When that feeling occurs as I’m learning a piece I know I need to see if there’s a way for the other hand to pop a finger in the middle of it, or I change the fingering in some way. (I brag to students about being a genius at fingerings now, though I always had a good ability for it. I had a teacher who would look at my fingerings condescendingly and refuse to let me use them saying, ”Jean, that sure doesn’t look very professional does it?!”)  I say to any student of mine that if their fingering gets the desired result and doesn’t hurt the hand, it’s fine with me. And a good example of how I choose repertoire is the Bach/Busoni C Major Toccata that opens my recent recording, Bach in Transcription. I absolutely love the sparkling energy of the dramatic opening. But I certainly took into consideration that the fast scale-like motive fits so well into the hand.

Are there now many groups dedicated to helping people with focal hand dystonia?
There are a number of groups to try, and there are support groups like Neuronauts. It’s easy to look on the internet and find so many places like The Hand Dystonia | Dystonia Medical Research Foundation, and The Dystonia-Brain Foundation. In addition, I highly recommend all these books: Grain Brain by Dr. David Perlmutter, The Mind and the Brain by Jeffery Schwartz, M.D. and Sharon Begley, Brain Rules by John Medina, and David Leisner’s Playing with Ease: A Healthy Approach to Guitar Technique.

Some people, especially musicians, can be reluctant to “let the word out” about any physical deficiency, preferring to keep it to themselves for as long as possible. Was this true for you?
I have never been able to share my thirteen years experience with FHD. I recently began to feel the need to tell my story, despite so much resistance. When the opportunity came for an interview with Fanfare, I was most appreciative of your interest in the topic, your sensitivity to me, and the excellent questions that enabled this story to “fall out” of me. My hope is that my experience can give other musicians with this condition not only hope and encouragement but more options in dealing with FHD.