Thursday, May 3, 2012

Focal Dystonia is an Emotional Disorder? Since when? (continued)

Again, I can't emphasize enough to read and talk about dystonia as much as you can to both medical professionals and non-medical/musicians who are rehabilitating or recovered before you make assumptions about what it is, or believe what another person "assumes" it is.

Surprisingly when you do a lot of reading or speaking to others who have various different types of dystonia you'll realize there are a lot of possible triggers. But with musician's dystonia, for some reason, they get stuck in the assumption that it is purely an emotional/psychological condition, and this gets passed around A LOT. What I have learned as I come across various viewpoints is to think critically and objectively....I analyze everything that I come across, but also keep an open mind. But throughout it all, there are some things I just can't help but flat out disagree with....and saying that it is psychological, an emotional condition, mental paralysis, or some type of neurotic perfectionism or anxiety disorder...I can't ever bring myself to believe that, nor support it.

There are professional psychiatrist and psychologist out there that say they can help overcome it, that it is an emotional/psychological condition because musician's are perfectionists who end up mentally blocking themselves from success due to the fear of failure or experiencing trauma, stress, stage freight, that they have seen improvement with many musicians through their work........but what scares me is....are they really recovering and getting to the core of the "unknown" source of dystonia, or is it only the first portion or step of the rehabilitation process, of the bigger picture? Is it a waste of time and money if too much time is spent on this area of recovery?

There are musician's I've talked to that make some type of progress through psychological therapy, and then the doctor takes credit for it as if it validates his belief, yet the musician goes on to spend more money with that doctor and finds years down the road their physical symptoms have not improved any further. Also even more so, I try to look at it much information is the doctor giving out about the rehabilitation process? (What exercises is he using? If using some for of retraining muscle groups...then it's obviously not as simply explained as a psychological or emotional condition).That's not to say I don't think therapy isn't helpful, and isn't required, I just highly disagree it is the source of dystonia or the "cure all."

Here is a post I recently wrote in a group a couple weeks ago:

I disagree that is a fear of failure/emotional disorder. I disagree that it is always the cause of dystonia or the main trigger/culprit. 

Like Leon Fleisher (who has Focal Hand Dystonia after physically injuring his hand), I had a muscle tear/physical injury that resulted in nerve damage and Focual Embouchure Dystonia. 

Though I believe psychological therapy helps in the beginning because it is a huge loss and setback and not everyone deals or handles well with their's definitely necessary to have your mind in the "right" frame of positive thinking before you start working on physical rehabilitation, to come to terms with everything...I don't think it's the answer or "cure all" to all types of dystonia's. 

There are a lot of guesses as to what the culprit is, for some it's genetic, physical injury, overuse, psychological, a change in mechanics (ex. an embouchure change), or nutritional. There are many cases where these all come into play...the only thing we do know is that when a dystonia is present, it is neurological-based from then on - meaning the brain and sensory are now sending mixed signals which can be reprogrammed....not easy though, not something that can happen overnight, but definitely achievable. 

I've come a long ways and all my spasms are almost completely gone, have been subtle and beneath the surface for the last 2 months, and now I can move my focus onto flexibility. A lot of people avoid talking about the physical/sensory-motor retraining it takes to lead to progress, and a lot focus more on their setback in terms of emotions.

 ‎...a lot of people would rather believe it is something in their head that can be fixed, rather than neurological and real...grounded in reality and physically addressed through rigorous retraining. I think that is a fear in itself. They want a blunt answer, a cure, a direct source, a simple answer right away to focus on.

When I read the statement: "These emotions come from trying not to play the instrument wrong rather than concentrating on playing the instrument right."

Do I honestly say, "oh wow, that is so true, what was I thinking? Maybe I really don't want to play my instrument right? Maybe I can't handle the pressures of the profession? Maybe it is all in my head? I'm mentally paralyzed?"

....lets be honest. For some few that is a possibility, but for many musician's who have been playing their instruments naturally or "right" for many years without anything catastrophic happening to them, it doesn't make sense that all of a sudden they are psychologically rejecting their own instrument just because of stress and stage fright when it has never been an issue before. Now, it would be a different scenario if they had stage fright their whole lives to the point that it really effected their well-being/happiness or chronic anxiety or depression...don't you think it would have stopped them sooner?

ALSO, the thing about dystonia is that it is present even when relaxed/calm. If it was anxiety, you would have symptoms of anxiety; accelerated heart rate, shallower breathing, less focus, nervousness, and somewhat shaky - but usually not isolated to a specific/particular movement (for example with embouchure dystonia you might be able to play a passage in your upper register, but not middle-to-low). When dystonia symptoms occur (the involuntary muscle contractions), they can happen even when you're in your most comfortable place (ex. your room), while relaxed and alone, and not thinking about it....they still occur. So why on earth is this associated to anxiety and fear of failure?

Yes, as musicians we tend to be perfectionists or think critically, but that doesn't make everyone at high risk for being thrown into the circle of "psychologically damaged." It's an illogical fallacy...that's like saying, "Joe plays football. Joe is a dumb jock." Might as well say, "Joe is a musician. Joe is a perfectionist who is blocking his own success."

NOW, I do believe, and again this is my own views/opinion. That adrenaline (the flight-or-fight reaction) heightens the dystonia symptoms...but it is an indirect correlation. The best example I can think of is Migraines. Migraines are genetic...stress heightens the symptoms, and it can even lead to a Migraine, but it is not the source of the Migraine, nor the cure to getting rid of Migraines permanently. This puts musician's with Dystonia at a huge disadvantage may be our last obstacle/hurdle to overcome before playing on stage again. Even the most calm and relaxed musician with dystonia has to deal with the adrenaline rush. We need that adrenaline to perform, because we are passionate, expressive, and it brings out the best in us when we can control it to a degree...but in the case of dystonia, it is less of help. Trying to suppress the adrenaline though is like killing that passion and excitement we bring to stage...the aura...our stage presence. Again, I don't believe dystonia's source or cure is anxiety, a fear of failure, an emotional condition, psychological, or some form of mental paralysis. I believe that it has many culprits that are known to trigger it, and that when it is finally initiated it does so in the brain/through our sensory-motor is neurological. And that is my primary focus in rehabilitation....sensory-motor/embouchure function retraining.

So when someone tells me that it's emotional, all I can say is...of course when a person has a huge setback like this, they aren't immediately going to want to play their instrument, especially when they become debilitated it is easy to start thinking negative (ex. "I don't like the way I sound, I can't do this, it's no use.")....but that doesn't mean it's the source of may be the beginning of what needs to be addressed in recovery, but it is not the source or "cure all." That's just my two cents.


  1. I had a bad case of focal dystonia in my left hand which I partially cured by adding more zinc in my diet. It seems that when you have a low zinc level in your blood due to eating beans, nuts, chocolate, all of which contain phytates which prevent absorption, you get an overload of copper in your blood. I am a flamenco guitarist. But if you are a trumpet player your mouthpiece has copper in it mixed with into the brass. This can raise your copper level. The zinc will remove it....If you go to
    "Musicians with dystonia bulletin board" under the title posting of:"Rubber band" you can read much more about the zinc cure. There are a few trumpet and trombone players discussing their problem with dystonia and how zinc helped them...It has helped me...You have to take the zinc along with vitamin B-6 on an empty stomach 2 hours before a meal or after for the zinc to be absorbed without being affected by your food......Good luck....

    1. Sorry I deleted my last formatting kept showing up weird! :)

      Thanks so much for reminded me of that! I remember reading about it a while back at .

      I added Women's 1-a-day multivitamin supplement to my diet about 4-5 months ago. I am not sure if it has helped me with my dystonia because I've been making good progress already before and after adding it. But it really does make me feel overall physically and mentally better! I have less headaches, less stomach problems, less exhaustion, and less hunger for some reason.

      The 1-a-day multivitamin supplement has 2mg of B6 and says that's 100% of a daily value. It also has 15mg of Zinc and says that's 100% daily value. It also has about 19 other nutritional vitamins, etc in it. I bought it at Walmart after my boss recommended it to me. She said it made her feel like a new person....and it really does...still shocked at how much energy I have...and 100x that when I exercise.

      Thanks so much for the comment! I wish you the best on progress with your focal hand dystonia symptoms. I know how you feel...I have a lot of faith and support in anyone who has been coping with this life-changing and grueling neurological disorder while never giving up hope.

  2. Dear Katie,

    I have been fascinated by this phenomenon for a while. I experienced just a few isolated incidents of the symptoms of what doctors have termed Focal Dystonia in the past and it coincided with a number of other physical imbalances. I find your insights to be very much in line with how I perceive this disorder, or imbalance, if you will. We live in a society obsessed with diagnoses and cures. We look at a problem and say, "this is a disease that we must cut out of ourselves" and we can do it if we "find the right medicine". I think that it's much simpler than this, which is not to say that it's easy. From my experience and through my observations it appears to me that "Focal Dystonia" is similar in nature to many other repetitive stress imbalances that many people experience from DOING REPETITIVE ACTIVITIES THAT ARE UN-NATURAL WITHOUT DOING SUFFICIENT BALANCING ACTIVITIES TO COUNTERACT THEM. Sorry for the obnoxious Anyway, I think that any musician, athlete, human who engages in prolonged un-natural activites should EXPECT one or more inflamatory conditions to ensue at some point down the line. Of course genetics plays a part, of course there are other aggravators, but the condition itself must be viewed as a fire. Once the fire is ignited, and as long as the fire is still smouldering things like Anxiety, Poor Posture, Muscle Imbalance, Poor Diet, Nutrient Deficiency, etc will be like fuel thrown on the fire. Often times we will observe the way that these AGGRAVATORS effect our condition and then, naturally, blame them as the culprit. But the reality is that the fire started after years and years of repetitve, un-natural activity without ENOUGH balancing activites. Think of practicing an instrument as a bow-drill creating friction and eventually a fire. The key is to put out the fire, and it's not going to be easy, but conceptually it is rather simple. You have to be proactive and artistic in your approach. You cannot expect one single "medicine" to simply "cure" you of something that is not a magical illness that came out of thin air. How many musicians do you know who got focal dystonia early on in their careers? How many office workers do you know who developed severe lower back pain after one day of sitting in front of a computer? How many novelists got carpal tunnel syndrome the first time they typed at a computer? I mean, let's be real here. There's a reason why the "seasoned" musicians get the focal dystonia. I think we would be best served by doing away with the victimizing and stigmatizing labels, and start getting realistic and creative about these chronic conditions. As a culture we need to stop obsessing over diagnoses and cures, and start focusing on balance, what got us where we are in the first place, and what's gonna get us where we want to be. Anyway, I applaud your article. Please feel free to check out my blog. I have some videos up that relate to this subject. I wish you well on your journey to a healthy and fulfilling musical life.


  3. Another thing just occured to me. I don't have experience with focal dystonia in the embouchure, however, consider for a moment that this is a muscular, repetitive stress disorder. I know the doctors want to make it SO much more complicated than this. But just consider for a minute that when you tense up any muscle in your body for long enough for extended periods of time, that it is only natural that the body LEARNS to contract these muscles more frequently and eventually will began to contract them involuntarily. I think this phenomenon is what is at the core of "focal dystonia". But now I'm curious, for my own research, do you find that doing slow and focused exercises like long tones is beneficial to counteracting your sypmtoms or does it make it worse, or have any effect either way?

  4. Hi Izaac!

    Thank you so much for that wonderful post! I very much enjoy hearing from other musicians with dystonia and their views. I definitely agree and feel along the same lines. I feel after I got injured, it was the only way my body knew how to deal with inflicting try to avoid it. And even now, after healed, if I irritate the scar tissue too much, my symptoms are worse. I feel like my body natural does this to protect itself from being overused, and because it has been overused so much. I have no doubt that my overuse of my muscles lead to my injury, and the dystonia symptoms.

    Currently I feel I'm at the stage where long tones benefit me, but in the beginning my muscles couldn't handle it. It made my involuntary contractions worse, so long tones were not doable or helpful. In the beginning, since my muscles tend to contract and pull into a spread smile...or tight muscle formation...I had to focus on relaxing them...playing on a more collapsed embouchure. It was difficult, because the symptoms were bad no matter what I did, but I intuitively and physically felt that I needed to try to play with relaxed muscles...and over time I realized this was more like deprogramming my face...which was necessary. I call it "ironing" out the spasms. I had to stretch them in a relaxed position (kind of like if your muscles in arm are sore, you stretch them before you excersize). Maybe because my face was so use to contracting into a tense position, I needed to do the opposite and stretch them into a relaxed position. By that, I mean a collapsed embouchure.

    After learning to play on a collapsed embouchure, and eliminating my tonguing (using air/poof attacks instead of tongue articulation), I was slowly able to rebuild muscle groups...just by feeling things out. I always trust my body and try to find the tension and iron it out through exercises that make my embouchure feel like it has more blood circulation running through it...a vitalizing feeling, rather than a worn-out or tense feeling.

    It's not easy to explain, but I feel like much of my recovery has come from basically deprogramming my embouchure, and slowly reprogramming it just by listening to my body...and my embouchure slowly adapted new muscle movements as I went along.

    Currently, I feel I have 40-50% of my abilities back. And it is at this stage I now enjoy and can benefit from long tones. I work on them a lot now. Especially since right now one of the areas my symptoms occur in is when I hold out long notes...and I get a spasm here and there the longer I hold out a note. So the long tones help me feel out where it happens, what notes, what register, what position/angle, and I work on holding the note longer every time I play in order to see if I can adjust when the spasm happens or test it.

    Hope I explained things okay...I typed this really fast. So glad you commented!!! Wishing you the best as well with all you are doing! :-)

  5. ...also wanted to add, that I really enjoyed your comment about balance. I do feel that is very important in recovery too. Balance and moderation in how and what we play. I use to be a high horn player, and I rarely got to balance my use of my low register in my playing. So my embouchure was constantly tense and always playing high up there. And when I got injured, I was at a point where I was so tired, and being overused, and pushed to my limits, but I thought I could handle it. My endurance was gone, and I just thought if I played through it all, I'd get a break eventually and revitalize my face...but that wasn't a good idea. I even asked for a co-principal, and to switch parts when I did feel pushed that far, and I was turned down. I look back often and think, "I should have tried harder to get a co-principal, or lower part, even when told no." I should have argued and told them it was necessary and vital for my health of my playing. I always got the reply, "I don't have anyone else who can do this part." or, "We need you because of this year is the tour." or "We don't have anyone good enough to double your part, there's just not enough players in the studio." and when I did get injured, and my playing went downhill, it still was a very hard fight to get them to understand what I was going through. It was if they never had an injured player before, or heard of one, or never been been through an injury before either. It was frustrating.