Sunday 24 October 2010

Focal Dystonia: focal what?

This scientific term which I admit is a bit of a mouthful, refers to a phenomenon where one loses control of the individual fingers. From what I've read, this condition seems to strike for the most part musicians who may be more susceptible than others to repetitive stress syndrome. Due to the nature of a musician's use of the fingers, these digits undergo a type of stress which may in the end, render the musician incapable of using his or her fingers.

Everybody may be familiar in the past decade with carpal tunnel syndrome, a condition which adversely affects the wrist and forearm. This condition represents a physical change to the part of the body in question. Focal dystonia on the other hand, seems to reside in the brain itself, not in the fingers. What happens is that when one attempts to use the fingers for, let's say playing a musical instrument, the result is that the fingers may spasm or curl up displaying none of the relaxed independence of movement necessary to manipulate a keyboard or finger a string. While it has been discovered that injections of Botox, a muscle relaxant may offer some temporary and incomplete remedial effects, the onset of this condition seems at the moment to be irreversible.

Some violinists and guitarists who were left handed have learned to play right handed. Some have had to give up music. According to the literature, some have undergone treatment which in some cases has seen them back playing again.

The curiosity of this condition is that it isn't physical. The fingers have not been affected by some physical ailment. What seems to have happened is that something has gone wrong in the brain itself. Doctors have studied brain patterns which clearly show that parts of our brains light up as we use each of our fingers. In other words, a specific part of the brain can be seen to be associated with a specific finger. When we use our right index, the scans show a part of the brain being activated; when we use our left thumb, another part. Experts have mapped out the ten fingers and can see how these individual parts of the brain correspond to each finger.

With focal dystonia, this distinction between the parts of the brain becomes blurred. Instead of one part of the brain being activated, multiple parts of the brain become activated. The person attempts to move their right index finger but the part of the brain which activates the right index finger, the right middle finger and the right ring finger all fire off at the same time. Instead of one finger moving, all of these fingers move and the result can be a spasm or even a curling of the three or even all of the fingers.

Why? No one seems to know. The fingers themselves do not appear damaged. Under certain conditions, the person can wiggle their fingers which would seem to indicate that there is nothing physically wrong with the digits. Nevertheless, when attempting to do the original activity, play the piano, play the violin, the fingers will not cooperate.

My experience
During my twenties, I studied the piano. Well, I played keyboards in bands (electric piano, organ, and synthesizer); I spent a few years on the road then I decided to settle down and be serious by studying the piano at the Royal Conservatory of Music and music in general at the University of Toronto. Unfortunately, I was a late starter to being a serious musician and maybe therein lies the seed of my failure.

I tried to make up for my late start; I tried to regain lost time by practising a lot. I mean a lot. I would spend on average 10 to 12 hours a day, sometimes even more, seven days a week. However it wasn't just the piano. There was sight reading, solfege, musical theory, harmony, counterpoint, orchestration, composition, everything and anything which related to "serious" musicianship.

Two things always haunted me. First of all, my technique, if I can say I had one, was faulty, probably pretty bad. I had started to play the piano at the age of 18 and I never took any lessons until I was about 22. Secondly, I suffered from terrible stage fright which is quite understandable considering my late start. Both of these problems I tried to overcome by practising... and practising and practising and practising.

This faulty technique certainly reared its ugly head in my left hand. Of course, as time went on and I got better in general, I kept trying more and more difficult things. However, difficult sometimes meant just being plain nutty. Chopin's Black Key √Čtude? Yes, I did it but that wasn't quite enough. No, I had to try Leopold Godowsky's study on that piece which essentially transposes the hands and puts all the filigree black key work in the left hand. Godowsky, by the way was apparently considered the pianist's pianist. His technique was so incredible that even professional pianists think twice about undertaking some of his work.

Little ol' moi? There I was shooting for the stars which were way the heck out of my league. In any case, I visited several of the professionals at the Royal Conservatory seeking assistance in what to do about a left hand I perceived as being an impediment to me moving forward. The result ended up being 2 years of fanatical attention to Czerny and other composers of piano exercises in a vain attempt to wrestle my left hand to the ground.

At the end of year number one, I recognised that things were not getting better, in fact, I suspected things were getting worse. At the end of year number two I had come to the realisation that if my playing before all this had been sitting at, let's say 6 out of 10, I had now fallen to 4 out of 10. Quite simply, I was worse off than before. I hadn't moved forward; I had fallen back.

How all this manifested itself was that the third, fourth and fifth fingers of my left hand had slowly become less and less independent. When I would attempt to press down a key on the piano with the fourth finger of my left hand, all three fingers would push down because all three would curl up at the same time. It's like in my head I was saying, "Okay, fourth finger press key F#" but I would watch my hand and all three fingers would curl up and I would hit F# and the surrounding keys of F natural and G which made for a bit of a cacophony.

After mulling over my options, I quit music in 1978 and never went back.

Since then though, the condition has worsen. I had taken 2 years of typing in high school and when I made the switch to computers, I brought along that skill. Unlike most computer people who hunt and peck at the keyboard, I used all 10 fingers. I was complimented over the years as being one of the few professional programmers who could code by typing with all 10 fingers.

This however didn't last as that fourth finger of the left hand kept curling up with fingers number three and five. It got to the point where I would type with only 3 fingers on my left hand. Oddly enough, around 2001, my left hand went kablooie; all the fingers curled up and I couldn't type at all. Now, when I type, I use the 5 fingers of my right hand and just the index of my left hand. Sometimes though, the tension is so intense, it actually hurts to use my left hand at all.

If I go slowly, really, really slowly, I can sometimes use my left hand to a certain extent but the moment I stop paying attention and start to type quickly, my left hand just locks right up and I can't do anything with it. It is the oddest of sensations. I can see my left hand; I can wiggle my fingers but when it comes down to the crunch, I can't make it work.

Oh since all this started with my fourth finger, my "ring" finger, wouldn't you know it but wearing a ring bugged the heck out of me. It wasn't that it hurt outright but the 4th finger would somehow bother me constantly even if I wasn't doing anything with it. Wearing a ring just exacerbated this and I know my wife was none too pleased that I didn't wear my wedding ring all the time.

Famous People
In researching this I find all sorts of names of people who are more or less famous which for me points out that this condition isn't something that is made up. One stands out, Liona Boyd, Canada's "First Lady of Guitar" although in looking into her story, she was out of the limelight for a while but seems to be back after undergoing some sort of treatment. (her biography)

For me personally, the biggest name on the list is Keith Emerson of the progressive rock group Emerson, Lake and Palmer. He was forced to cancel tours in 2009 due to his condition and I've had found some video clips on YouTube showing his playing and he is clearly fighting with his right hand. His fingers get so badly curled up, I'm surprised he can play at all. - I notice that he is back touring in 2010 (his biography) however just what treatment he has undergone remains to be seen.

One thing I didn't know is that focal dystonia can affect other parts of the body. Warren Deck, principal tubist with the New York Philharmonic was diagnosed with this condition in his upper lip which ended his career in 2001. He now teaches music.

Scott Adams, author of the famous Dilbert cartoons was diagnosed in 1992 and has been dealing with this condition on and off since then.

There are numerous stories on the Internet of both violinists and guitarists who have relearned how to play by switching from left handed to right handed or the other way around. In other words, they couldn't overcome the problem; they literally had to try something else.

Billy McLaughlin, a professional guitarist was diagnosed with the problem in 2001, relearned to play right handed and is back playing professionally. (his biography)

Final Word
Focal dystonia or focal hand dystonia is merely one of a family of disorders called dystonia which refers to a neurological movement disorder involving involuntary muscle contractions. This condition is not understood; its actual causes remain unknown and treatments are limited to minimizing the symptoms. Obviously there is no cure.

Task-related factors are considered important in the triggering of this condition as it appears disproportionately in people for whom high precision hand movements are required in what they do such as musicians and artists.

I notice a ray of hope. In researching this article, I have found references to specialists who seem to have put together a program of retraining the fingers. I see claims of success but have no idea just how easy the treatment is to put into effect.

In any case, my days as a musician are over. After 30 plus years since I quit, I've moved on. We got an electric piano in the family a couple of years ago which came with a book of music including The Entertainer by Scott Joplin. I read through the piece and memorized the first 32 bars then realized I wasn't at all interested in continuing. It wasn't fun. I looked at this knowing exactly how much time I would need to memorize the music, how many times I would have to play it to master the piece and how at the end of the day I could play this piece just because the left hand really involved nothing more than octaves. Bach's 2 part invention in C major would be beyond me, beyond my left hand.

Focal dystonia is for me a bitter sweet discovery. In 1978 when I quit music, everyone, my parents, my family, my friends all thought I was destined to be a professional musician. When I quit I didn't really understand why exactly I was quitting  - I had no idea what focal dystonia even was - but I knew that I didn't have a choice; I wasn't going forward, I was going backward. I felt humiliated and knew deep down that everyone would consider me a "quitter". My parents tried to be accepting but it came out a few times that one, they didn't understand or accept my reason for quitting and two, they really thought of me as a quitter for having done so.

It wasn't until 1998 when my family doctor sent me to a specialist for some neurological testing that I discovered the condition. After putting me through a battery of tests and noticing some slight shaking in my left hand, the doctor told me I had focal dystonia. "What the heck is that?" The answer to what I had first experienced 20 years prior which led to the end of my career in 1978. Hmm, I ofttimes thought it would have been so much easier, so much clearer for me, for my parents and for everyone else if I had merely gotten my left hand caught in a wood chipper and had it cut off. Now that is something everybody can understand.

Oh well, I leave the playing of music to others. There must be different things to do in life. (Passion: Can you live without it?)


Wikipedia: Focal Dystonia
Focal dystonia is a neurological condition that affects a muscle or group of muscles in a specific part of the body causing involuntary muscular contractions and abnormal postures. For example, in focal hand dystonia, the fingers either curl into the palm or extend outward without control. In high level musicians, focal hand dystonia is referred to as musician's dystonia and focal dystonia in sports is commonly referred to as (the) yips. It is believed that all adult onset dystonias are a product of combined genetic factors and environmental modifiers.

Dystonia Medical Research Foundation

DMRF Canada: Focal Hand Dystonia in Musicians

Wikipedia: Dystonia
Dystonia is a neurological movement disorder, in which sustained muscle contractions cause twisting and repetitive movements or abnormal postures.[1] The disorder may be hereditary or caused by other factors such as birth-related or other physical trauma, infection, poisoning (e.g., lead poisoning) or reaction to pharmaceutical drugs, particularly neuroleptics. Treatment is difficult and has been limited to minimizing the symptoms of the disorder, since there is no cure available.

Wikipedia: Leon Fleischer

documentary: Two Hands - The Leon Fleisher Story


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1 comment:

Unknown said...

holy shit! i have never heard of this! i'm so sorry that this happened. when you have a passion for music and it's stifled, it really is a tragedy.

i have had to recover from brain injury from a motorcycle accident and couldn't really play for 2 years ... but i'm back at it now