Focal Dystonia

May 14, 2006 at 03:04 AM · I have suffered with focal dystonia for the past five years and it is starting to get better. It has been frustrating to say the least and I have spent countless hours and money seeing top specialists from across the country. No one was able to "cure" me of my ailment, until now. In the past two years I've been seeing a chiropractor/kinesiologist and my hand seems to be responding, I'm not sure if it is due my sessions or a strange coincidence. I was put on a special diet which I've mostly maintained for the past two years, and there is also an emotional component to his therapy. I'm happy that I can play most things now (around 95% most days). I recently gave a performance of the Ysaye Ballade which I had never performed!

My other option was to try botox, but it is expensive and lasts only 3 months then you need to get another shot. It is also a toxin that the government at one time feared terrorists were going to use in large quantities to kill people. Botox (botillinum toxin) is also what celebrities use for "removing" wrinkles - it actually temporarily stops the muscles from contracting which causes the wrinkles.

Are there any violinists who have also suffered from this unfortunate disorder?

Replies (11)

May 14, 2006 at 05:10 PM · Bravo for what sounds like a nearly complete recovery! This is the same affliction that crippled Leon Fleisher for ~40 years, and my first thought is that you should ask for specific advice from pianists.

I'm sure you're aware of this, but there is a lot of material online regarding Mr. Fleisher's recent recovery.

May 15, 2006 at 12:22 PM · Hi steven,

Chiropractor has problably help you to cured; however dystonia is the plague of musicians and physicians as well since there is no real efficient treatment for everybody. Biotox,as other drugs, is helpful for a short period but has to be frequently renewed and does'nt really cure. Specialized physiotherapy is the best treatment that might lead to complete ailment. Dystonia,that affects high level musicians,is generally cause by poor posture along with overuse of a finger. I strongly advise you to review your whole position and technics according to your morphology with a specialized teacher

Best luck

May 15, 2006 at 01:32 PM ·

May 15, 2006 at 01:39 PM · (link in above post got all screwy & now I can't edit it)

Violinist Peter Oundjian (current music director of the Toronto Symphony) had to quit the Tokyo String Quartet because of focal dystonia. He & Leon Fleisher are members of the Musicians with Dystonia Advisory Board

Musicians with Focal Dystonia website:

http://www.dystonia-foundation.org/info/group.asp?id=4

May 15, 2006 at 01:54 PM · I know a lady with focal dystonia, who found treatment with a physical therapist (specializing in musicians) in South Pasadena, quite successfully I believe. She is a good friend of mine (and has email, if you are not in the area) - I can put you in touch with both of them. Email me privately ~

cheers.

Jenni

May 15, 2006 at 06:09 PM · Hey guys. Thanks for all your responses. I actually talked to Leon Fleischer a year or so ago when he was giving a masterclass and he said he's been getting Botox injections at NIH. He thought I should give it a try, but I am so close to being fully recovered believe it or not! I have done a lot of technique rehauling to make some changes, and that has helped. I'm much more aware of my levels of tension, biofeedback helped a little bit with that, but general awareness is the most important when playing and practicing. I can feel when the finger wants to trigger, basically a curling in of the pinky and sometimes ring finger digits. When practicing a passage, I will think very physically about the quality of movement and that helps tremendously. If the quality of movement feels loose, then I'm usually fine and the dystonia doesnn't trigger. I basically have to work from the point of view of physically feeling the quality of movement with proper technical execution, thus inhibiting the dystonic movements to occur. That takes care of it 95% of the time. I'm hoping that the chiropractor can take care of the other 5%. I might even try doing some auditions for fun! if you can imagine that! For personal reasons, I've figured out the symphony life isn't for me. The only rewards seem to be monetary at the moment, and I'm much more concerned with my overall happiness and well being. I've played with some top notch ensembles however, and at times, it feels right. I think I'd rather play in a good string quartet. I know about Peter Oundjian, Gary Graffman, and others and that dystonia can occur in wind players in their emboucure (sp?). It looks to me that Kurt Masur, in watching him conduct, might have also had it. I'm very aware of the dystonia foundation, and know the doctor who works closely with that organization in NY. He is sort of a friend of mine and was going to get me to be in touch with a neurologist friend of his who is the guru of botox injections and efficacy for musicians. I also have a doctor here who could perform that, but I have opted to do otherwise at this point of my career, because the behavior modification seems to be working well. Thanks again!

May 30, 2006 at 08:05 PM · My piano professor has dystonia. Apparently there is a dystonia clinic in Birmingham, Alabama (near my university). He goes there every now and then for Botox shots in his arms, and he says that the shots have helped him to play about 90% as good as he did before the dystonia. Before the Botox shots, he said he was completely miserable and he thought about quitting music. He swears by these shots. I imagine they're really expensive, though.

February 3, 2008 at 10:49 AM · I was affected by Focal dystonia and it was very difficult. Finally I found Dr. Farias in Spain that lead me to play again on stage.

I think Dr Farias is the one who knows most about this condition in musicians. He helped me to reduce my muscular tension in a 85% in 4 Days. He has helped Grammy awarded musicians and orchestra soloists.

If you have this condition I would recommend that at least contact with him, he has a clear picture about the condition.

It could help you.

Here is his web site:

www.musicians-injuries.com

and here is the discussion forum of the Dystonia research foundation

http://www.dystonia-bb.org/forums/mwd/index.html

Best wishes

Adela Klein

February 3, 2008 at 04:04 PM · I strongly suggest AGAINST Botox injections, because I don't believe they're good for you. As you probably know, Botulinum toxin is essentially a neurotoxin, which blocks release of acetylcholine in the neuromuscular junction, which if accumulated in gross amounts, will may lead to paralysis.

Steven, have you considered deep brain stimulation? It has been done with considerable success for people who suffer from movement disorders such as dystonia or Parkinson's.

The surgery involves inserting two electrodes in the brain (or you could get a unilateral electrode), and a pacemaker in the chest that generates impulses to the electrodes, stimulating certain subcortical structures in your brain.

February 3, 2008 at 06:28 PM · The deep brain stimulation done in Parkinson's is usually reserved for severely incapacitated individuals who have exhausted all other treatment options (my sister is a neurologist, and this is her specialty).

February 3, 2008 at 07:29 PM · Clayton Haslop suffers from focal dystonia (his ads appear regularly on this website). He is a superb violinist/teacher and a warm, friendly person - my guess is that he would be willing to share his experiences with you if you email him.

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