[Dixielandjazz] dystonia

[Dave Gravatt]

I suffer from it myself, since 1995. I was earning my living as a full-time musician (trombone) and, over eight months, slowly contracted the problem leaving me unable to play to this day. My good pal, Dan Havens, cornet player in St. Louis, also has it. I saw five doctors and finally found one in Chicago (the Rehabilitation Institute of Chicago) who diagnosed it as Embouchure Focal Dystonia. There is no cure. However, that same doctor called me about six years later (how rare is that?) and explained that studies continue and a cure WILL be found. ..."but not in our lifetime", she added. 

The most frustrating thing is listening to people who THINK they had it and got over it. If you suffer from similar symptoms and then get better, you did not have Embouchure Focal Dystonia. You were fortunate enough to suffer from temporary overplaying, failure to warm up properly, or some other some such simple challenge.

If the fellow you describe has it (and the symptoms described are right on), there is no hope. There's plenty out there on the internet about it. Much more now than in 1995 when I started researching. Good luck.

Dave
=============
Dave Gravatt
"It's a treat to beat your feet."
The New Creole Jazz Band
Springfield, Missouri
417-877-8811 (home)
417-894-8557 (cell)
http://www.CreoleJazz.com


>  -------Original Message-------
>  From: billsharp <sharp-b at clearwire.net>
>  Subject: [Dixielandjazz] dystonia
>  Sent: Sep 13 '06 14:04
>  
>  Here's another of those strange maladies that I'd never heard of,
>  called dystonia.  My buddy Bob Romans is purchasing  a cornet from a
>  fellow who can't play it any longer (if he could play it longer, it
>  would be called a trumpet), because the seller has dystonia.   The
>  person describes his condition as follows:  " Dystonia is a very vexing
>  and troubling condition. It affects people in different ways--or should
>  I say different parts of the anatomy. Piano players get it in their
>  hands. They can not move their fingers to play. There is an actual case
>  of a concert pianist who came down with the condition and could not
>  play for thirty years and is now back to playing. It is not a
>  psychological condition. Neurologists have done studies and can show
>  that there is some type of neurological malfunction, but they have no
>  regimen for a cure. As it regards trumpet players, it can be evidenced
>  in a very rapid trembling of the lips (the mouthpiece will almost
>  bounce off the chops) and then there will be missed notes from a lack
>  of vibration or ability to control the embouchure. In my case, a
>  slurring from G to low C may disappear even though I have made this
>  slur a thousand times in practice. Since the messages to the muscles
>  come through the nerves and the brain needs to send signals, there
>  appears to be a problem in how the messages do or do not get sent to
>  the embouchure. To date, I have found no one who has documented any
>  type of regimen or cure. I have spoken to one professional freelance
>  trumpet player who has it, and he has not been able to find a cure. I
>  have communicated with a college professor who teaches low brass. He is
>  a tuba player who has been able to function but not at the level he
>  formerly enjoyed. And he had no encouraging word of advice for me. I
>  have read almost all the literature on the topic and have consulted
>  with a friend of mine who teaches in the medical school of Wright State
>    University, where I just retired from. He also plays euphonium and has
>  spoken on the topic. But he also has failed to find anything more than
>  I have. There is quite a lot of information available on the topic and
>  much that is quite useless. There is also a dystonia foundation if you
>  would like more information. You can find it easily by using Google on
>  the Internet.
>   
>  Thats the short of a very long problem. And may you never experience
>  it first hand, or first chops-"
>  
>  I've never heard of this "Dystonia"  before this.  Anyone else you
>  DJMLers know of anyone else who suffered in their musical careers
>  because of it?  And did they find a way to get rid of it?  We might be
>  able to help this fellow, if you know by perchance someone who had it
>  and got rid of it, if that's possible.  It seems to be such a weird
>  problem.   Maybe it's because they all  continued playing on their
>  mouthpieces after the coating wore off.  But then, what about the piano
>  player?  Maybe it's because they all ate mouldy figs,  I mean
>   ????????? Jeeez Louise, what other strange maladies lurk in the
>  corners waiting to attack musicians?
>   
>  
>  
>  
>  
>  
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