TubeNet

I've had dystonia now for about ten years. Five years of no playing, then trying to get back into it. Somehow over the last year I've found ways of getting a decent sound out of the horn, although it definitely is not totally reliable. Try this, try that, if it starts to twitch immediately switch to something else. I share 4th horn with another person my age who also has dystonia. Between the two of us we get the notes out pretty well, and we enjoy the hell out of the high level community group that lets us play.

I have a Skype lesson scheduled near the end of this month with Janet Kagarice, who has saved the careers of quite a few professionals also dealing with embouchure dystonia. I don't know what she can do for me but I do know that i will do everything she says no matter how crazy it may seem at the time. I don't even remember what my embouchure WAS ten years ago, and there is nowhere to go but up. People I've talked to whom she helped say they play better than they did before. Quite a recommendation. I'll try to remember to come back here and report when I reach a conclusion about whether I was helpable or not. Ten years is a long time, and I am not young any more.

I hope the therapy goes well. Good to hear that you are able to get out and do a little cooperating on the 4th part. Playing with others, at any level, is fun.

I look forward to your report. Here's to positive outcomes!

I am curious, Maryann, as to the symptoms of Focal Dystonia. How is it manifest?

Dystonia is a "brain path problem." Everybody has different symptoms. A local formerly excellent trumpet player's head starts to wag back and forth as he brings his trumpet to his face, making it impossible to even have the mouthpiece stay put. Dave Vining (recovered) would have his lips "lock in place" when he tried to start a note. Both I and my friend whom I share the horn part with, have a lip tremor that will produce everything from an unwanted vibrato to a full-blown unwanted lip trill or even jumping back and forth between partials. All uncontrollable by force of will, and always made worse by trying to control.

I had my Skype lesson with Jan a week and a half ago. I have a very high level of respect for her. She has recovered 300+ people from dystonia, including pros who were not able to play a note. Recovery times vary widely.

Here is the concept I learned, which many with dystonia are going to argue vehemently against because "it just can't be that simple."

Illustrative example: You have two batters, whom I will call Batter A and Batter B. Batter A has all his attention on the incoming ball and can watch it either go by him (if he does not swing) or actually see it hit the bat, if he does swing. This is called an external focus of attention, focusing on the result rather than the process. Batter B has all his attention on how he is holding the bat, where his hands are, the position of his arms, which muscles are tense etc. He may not even see the ball as it goes by him. This is an internal focus of attention, a focus on the process rather than the result.

Clearly Batter A is going to be better at hitting the ball.

People with dystonia are like Batter B, with their focus on the process. For whatever reason, which could be lousy instruction that still allows them to learn to play well, or just an intrinsic way of doing things, they learn to play with an internal focus (attention on their process.) At some point, the brain path can get corrupted with too many signals that counteract each other, and the muscles are only doing what they are told. It is not a muscular problem at all, but a brain problem. And it can be fixed.

The fix is to learn to play with an external focus, which can be extremely difficult for someone who has become even more internally focused because of the weird way their embouchure has been behaving. My extremely frustrating lesson (for which I am grateful) was centered on basically guiding/forcing me to make a sound using an external focus. None of what the internally focused person wants badly, which is specific instruction on how to change what they are doing so it works. No, the opposite: stop altogether paying attention to the embouchure and learn, from the beginning, a different way to go about making a sound.

In my case, which I guess is somewhat unusual, in the last year or so, my dystonia would alleviate 20-30 minutes into a rehearsal to where I was playing almost normally, and on odd days I'd pick up the horn and it "just worked like it used to." Then, like everyone who has had this happen to them, I'd decide Wow I can practice again! and WHAM I'd be back in dystonia as soon as I started to work on something. Now I understand both....in a rehearsal when I stop thinking about my embouchure and get involved in the music, my focus changes to external and the bad brain path signals stop flowing. Same with picking it up out of nowhere and having it work, then having it go off the rails as soon as I decide I can work on something. Change of focus from external to internal.

So my assigned practice is a very specific thing (that I am not going to try to explain) to learn to make sounds with an external focus, changing my focus from internal to external. Even as soon as a week, things are starting to turn around. I had the best night last night that I've had since I got dystonia, during the rehearsal. I have hope that in six months I'll be reliably up and running, and at that point I'm going to ask her how to fix my embouchure so I can play high, which is what drove the descent in the first place (lack of proper instruction, and an amazing determination to play what i could not, anyway.)

I think the "calming the emotions approach" used by Fabra works for some because it changes their focus away from internal. In my case, it was no longer upsetting to me when my symptoms would manifest, since I completely accepted the situation many years ago, and a "calm the emotions approach" would not have had mcuh effect because there was nothing to work on.

I hope this helps someone. She is right about what goes wrong, and it is fascinating that those people with dystonia I have explained it to, are EXTREMELY resistant to thinking it could be that easily defined. That doesn't mean it is "easy" to fix but the concept is simple. It is still going to take an experienced and expert guide to get fixed for the vast majority of people. But it is not a life sentence nor is it irreversible.

MaryAnn wrote:Here is the concept I learned, which many with dystonia are going to argue vehemently against because "it just can't be that simple."

If it helps, to me it sounds very complex in execution, if simple in principle.

But on the bright side, aside from however well it may work for the specific complaint, it sounds like that external focus is desirable for any musician. There's a lot of mental activity that we can't account for consciously, especially in something like music, and in my experience the more I leave it to that "black box" to direct my movements etc., while focusing my attention on the result, the more capable I am - because the black box part can be trained, and the conscious part can't.

Nice report, MA. I look forward to updates.