Improvement with sensory retraining ?
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Posted by: sam ®

12/26/2002, 17:50:02
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Hi to everyone !

first I would like to say that i'm very happy to have found this board !

A few words about myself : I 'm a 27 yo guitarist from France.been diagnosed with focal dystonia in my Left hand in 1996.

(my middle and ring fingers have abnormal movements(curling) when i try to use them in conjunction with my pinky)

I've since tried artane, physiotherapy, bot-tox, acupuncture, retraining (on my own and with a specialist), all this with absolutely no success.

Has someone here tried some "new therapy" like

-constraint induced movement

-immobilization of a limb

-braille reading

for how long, and for which result ?

i 've been reading for 2 years about recent scientific findings, and sensory retraining is still described as VERY promising.

So, i 'd like to know if someone in the real world has experienced any improvement with that.

Thanks,

Sam.

--modified by sam at Thu, Dec 26, 2002, 17:51:45







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Re: Improvement with sensory retraining ?
Re: Improvement with sensory retraining ? -- sam Top of Thread Archive
Posted by: dave f ®

12/31/2002, 23:27:52
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Hi Sam, (and everyone else...)

I am a bassist with focal dystonia(4+ years) affecting my right hand. I have been working with Dr. Byl in San Francisco for several months now, and I have made good progress using her approach. This being said, I still have (mild)dystonia and I am not playing my instrument just yet.

Of course, I would be more than happy to share my experiences with you or anyone else in the hope that it may be of some benefit. If you would like, you can e-mail me(davefiore@hotmail.com), but please put the words "focal dystonia" in the subject heading as I receive a great deal of spam.

As for the other methods you mentioned, I did try them both, but withdrew because of pain. While I did not see good results myself, I have read about people who have, so I would keep an open mind.

I hope this is helpful.

Dave



--modified by dave f at Tue, Dec 31, 2002, 23:30:28







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Re: Improvement with sensory retraining ?
Re: Re: Improvement with sensory retraining ? -- dave f Top of Thread Archive
Posted by: Tom B. ®

01/01/2003, 21:53:15
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Sam,

I am a piano player who has had focal dystonia for almost 10 years and I'm still hoping to find a treatment that works one of these days. I have tried many methods over the years, but just in the last few years have read reports on treatments that sound promising. I have met with Dr. Byl but have not had much success with her exercises. She is in San Francisco and I'm in New York so I am not able to work with her directly. I've put links to reports I 've read on my web site at www.tadmusic.com/rsi.html. Good luck with whatever methods you try and if I find something that works I'll be sure to let you know.

Tom,

--modified by Tom B. at Wed, Jan 01, 2003, 21:56:28







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Re: Improvement with sensory retraining ?
Re: Re: Improvement with sensory retraining ? -- Tom B. Top of Thread Archive
Posted by: terry andrew ®

01/05/2003, 15:07:44
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i am also a piano player with FD in the right hand. I have been using an exercise program (which is experimental) and have had some success with it. I know I'm better that when i started them last April. I am still doing them and the jury is still out on how long i have to. My e-mail is kybdcpa@aol.com if you need more info.

terry andrew







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Re: Improvement with sensory retraining ?
Re: Re: Improvement with sensory retraining ? -- terry andrew Top of Thread Archive
Posted by: Tom Beckner ®

01/05/2003, 22:29:39
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Dave,

I'm glad to hear that someone is having success with Dr. Byl's method. I had a couple of appointments with her while in SF last year but now I have just been trying some of the exercises from her handbook on my own without much improvement (I'm in NY). I have been doing sensory retraining with dominoes and braille, biofeedback, stretches, breathing and other things described in the handbook. If you wouldn't mind, could you describe which exercises you have found work best for you. It would be greatly appreciated not just by myself but I'm sure to others readers of the bulletin board. Thanks!

P.S. to Terry, Glad to hear you are having some success too. We corresponded a few times a year ago or so. What exercise program are you trying now?

Good luck to both of you,

Tom

beckner@optonline.net







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Re: Improvement with sensory retraining ?
Re: Re: Improvement with sensory retraining ? -- Tom Beckner Top of Thread Archive
Posted by: terry andrew ®

01/06/2003, 10:23:23
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Hi, Tom! it's nice that you remembered me. I participated in a test (and still am) since last April. It involves MRI's and also a splint with prescribed exercises that are about 1 1/2 hrs a day. It is based on work done by Victor Candia in germany. the mri's show retraining happening and I am better than I was 9 months ago but the progress is slooooowwww. But I am keeping at it.






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Re: Improvement with sensory retraining ?
Re: Re: Improvement with sensory retraining ? -- Tom Beckner Top of Thread Archive
Posted by: dave f ®

01/07/2003, 00:08:22
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Hi Tom (and everyone),

I would be happy to share what I am doing, but first I should mention that while I have seen some encouraging results, I still have a ways to go and I remain cautious. Also, in light of last years' International Musician fiasco, I feel I must state for the record that I am essentially clueless about this terrible condition.

My dystonia primarily affects the middle finger on my right hand. However, I can not use my index or ring finger without inducing a contraction of my middle finger. When I went to see Dr. Byl in September of 2002 to be evaluated, I was stunned at how poor the sensory status was for my middle finger. In my case at least, it seems as though there may be a relationship.

I started her exercises (mostly reading Braille), and after three weeks or so, I saw some progress (Of course, it was slow). It should be noted that Dr. Byl told me that reading Braille was only part of part of retraining. She directed me to section D (sensorymotor retraining) of her book, and I began to explore this section thoroughly. I believe that most of my progress is a result of the exercises in this section, so I will try to explain what I am doing. I also recently met with David Leisner, a classical guitarist, and adapted his ideas(which are similar)for the bass.

I started by moving my arm towards the string, initiating the movement from the large muscle groups in the upper arm. When my index finger engaged the string, I bent slightly from the MP joint(where the finger joins the hand) using only the intrinsic muscles in the hand. The natural 'curve' of the finger was maitained but I did not bend the smaller joints. I also put some tape on the finger(s) adjacent to the one I was working on, and concentrated on the keeping the tape from moving. Lately, I have been able to greatly reduce the amount of movement involved and I think that the tape helps by making me "aware" of the difference between the fingers.

Now, I am almost able to use my first finger independently and I have observed that the smaller joints seem to be bending on their own, without causing the tape to pull. My middle and ring fingers remain out of action, at least for the moment. Also, I continue to read Braille and do other exercises from Dr. Byl's handbook.

I hope this does not confuse anyone, and thank you Leif and Terry for your posts. I am happy to hear you are having some success!

Dave



--modified by dave f at Tue, Jan 07, 2003, 00:22:31







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Re: Improvement with sensory retraining ?
Re: Re: Improvement with sensory retraining ? -- dave f Top of Thread Archive
Posted by: purpleglide ®

05/11/2003, 12:07:58
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Hi I am a pianist with similar problems and would be very interested in talking to Doctor Byl .
Do you know her phone number or other means of contacting her.

Sincerely ,Alex purpleglide@aol 818 762 3130







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Re: Improvement with sensory retraining ?
Re: Re: Improvement with sensory retraining ? -- dave f Top of Thread Archive
Posted by: purpleglide ®

05/11/2003, 12:08:55
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Hi I am a pianist with similar problems and would be very interested in talking to Doctor Byl .
Do you know her phone number or other means of contacting her.

Sincerely ,Alex purpleglide@aol 818 762 3130







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Re: Improvement with sensory retraining ?
Re: Re: Improvement with sensory retraining ? -- dave f Top of Thread Archive
Posted by: purpleglide ®

05/11/2003, 12:09:34
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Hi I am a pianist with similar problems and would be very interested in talking to Doctor Byl .
Do you know her phone number or other means of contacting her.

Sincerely ,Alex purpleglide@aol 818 762 3130







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