Focal Dystonia

[Thomas Zöller]

Hi there!

Has anybody suffered from a focal dystonia in the piping scene that you know of?

Best wishes,
Thomas Zöller

[Wade Reeser]

I am fairly sure that our own Chris Hamilton (Tone Czar) suffered from focal dystonia. I believe it stopped his piping for awhile but he successfully rehabbed himself and is currently playing both in grade 1 band and open solo competiton.

[Chris Hamilton]

Yes, that's correct. It destroyed my solo career and eventually I stopped piping altogether for three years (no solos for eight years). But, like a phoenix, I'm back. I still have problems, but I manage to work around them and disguise them reasonably well. Most people are very surprised when I tell them I have this affliction.

I have met many other pipers who have suffered similar and worse affliction by Focal Dystonia.

The keys (according to the Arts Medicine specialist who helped me):

1. Change your repertoire - avoid tunes that have movements that are problematic.

2. Change your technique - move your hands around, get comfortable, get leverage, do what it takes to make it work.

3. RELAX - don't try to force anything, that only makes it worse.

There are drugs available, but they're of limited use and may or may not help.

Chris

[Kevin F. Gilstrap]

I believe that Hamish Moore also suffers from this.

Chris, what were the early symptoms? What was it that sent you to the doctors?

[Thomas Zöller]

Hi there!

Thank you Kevin, Christopher and Wade for your answers!

If anybody knows more, PLEASE post.

All the Best from Glasgow,
Thomas

[Chris Hamilton]

Originally posted by Kevin F. Gilstrap:
I believe that Hamish Moore also suffers from this.

Chris, what were the early symptoms? What was it that sent you to the doctors? That's correct, Hamish does. Some other famous names as well.

The problem started in the summer of 1987. I was warming up to compete in the Professional MSR at a local games, and I was practicing "Abercairney Highlanders", and suddenly, without warning, I could NOT play the first phrase -- long Low A, quick B, grip to C -- without the B finger moving involuntarily halfway through the dotted 8th note A. This literally did not happen the day before or at any other point in my 15 years of piping prior to this. I was known for my excruciatingly clean and crisp fingerwork.

And the odd thing was, no pain. I thought, "Carpal Tunnel? Where's the pain?"

From that humble beginning it began to affect anything involving the B finger, mostly A-B-C or A-B-D with a grip, throw, or doubling (especially with a long A / quick B). I could mitigate it somewhat by adding a D gracenote on the quick B, but of course that goofs up the timing and the accenting. I couldn't even play "Scotland the Brave" !!!!!

I went to an orthopedic surgeon. He examined my hand and told me that there is nothing wrong with it. Perfectly normal.

Normal? I couldn't play simple things that used to be auto-pilot!!

No clue, no cure, nuthin'

After a year of this I gave up on solos. After 4 years I gave up piping completely (though I will say that a nagging spouse (not The Lovely Heather, mind you) and general burn-out had a lot of influence there as well. I was out of piping almost entirely from fall 1991 to fall 1994.

In 1994 I began to play again (got "the bug"!) and for the first week the problem did not appear. It was gone! Then it returned ... ugh ... in spades.

One day in late 1994 or early 1995 I read an article in the Piper & Drummer by a Dr. Patrick Potter. He's an orthopedist and piper. He talked about carpal tunnel and similar hand injuries. At the end of the article he alluded to something he called "focal dystonia" or the pain-free sudden loss of previously skilled motor movements. So I found his number and called him up, and he recommended a friend of his, a specialist in my area. He said this guy was the BEST.

I saw a Dr. Norris at the National Arts Medicine Center. He watched me play, watched video tapes of me playing before the onset of the problem, and watched videotapes of "normal" pipers. He said this is common among guitarists and pianists. His theory was that between my odd grip on the chanter (my thumbs are double-jointed, so I have a claw-grip on the bottom hand), my heavy computer work, and piping, this was not unexpected. The B finger is not designed for fine motor movements, it's designed for power and gripping. Making it do all these detailed minute movements on the pipes (or other instrument) is very unnatural.

Overuse, stress, something had to blow. It's essentially a muscle or group of muscles saying, "We don't really want to do this anymore, you guys go on without us, we'll just stay here and watch TV."

He mentioned Bo-Tox treatments but advised against them - much pain, little gain, lots of frustration.

His advice is in my earlier post - relax, change technique, change repertoire. And, STAY POSITIVE, DO NOT FORCE IT. He also cautioned me -- only ONE professional musician that he'd treated was able to return to his prior level of performance. If I were fortunate I'd get some of the dexterity back.

Well, it took a while ... and a lot of struggling, but once I knew WHAT IT WAS (ie, there IS a reason for this, it's not some mysterious lightning bolt or the Olympians rolling dice) I was determined.

And here I am today. In late 1996 I returned to the solo circuit, tentatively, and soon I was back in form. I continue to compete with reasonable success on the Professional circuit, and am actually known for my strong clear technique. I play with a Grade One band, front rank and all that, and have played at The Metro Cup, the USPF and other venues. I'm no Alasdair Gillies, but I don't suck.

And most people are unaware there is any problem at all. Believe me, the problem is there, but it's much less than it was, and I hide it well. Kind of having long dust ruffles on your bed to hide the trash underneath!

I've met other pipers who've had it worse than me - had to quit piping completely and such.

Whew, I didn't mean to write this much!

The moral of the story is, as David Soul sang, "Don't give up on us, baby, Lord knows we've come this far ...", or as Stalin said, "Not another step backwards!", or as General Anthony McAuliffe said, "Nuts!!!"

Now how many people do you know that can connect David Soul, Stalin, and McAuliffe in one sentence?

Chris

[Kevin F. Gilstrap]

Remarkable story, Chris, with a happy ending to boot! Very encouraging to us all! Thanks!

[jd3214]

Chris, thanks for sharing your story and optimistic outlook on FD. My story is similar, but, without the same positive result (at least not so far).

I was a retread. Poorly trained as a youngster; I was retreaded thanks to the kind and patient efforts of Chuck Murdoch. He turned me into a passable grade 1 amateur player good enough to carry a corner in the Manchester Grade 2 band when we were winning everything. It was fun and challenging, but, nothing like the quantum leap that was necessary when I graduated to Worcester Grade 1. As you know, more music means more practice. Originally from Massachusetts, my desire to play with Worcester was a childhood dream from the time when I was an eleven year old wannabe and I was willing to do almost anything to get into that Worcester circle and stay there.

When my chance came, I worked hour after hour daily. I taped band sessions and played full band practices with cassette and headphones every day. My playing improved and I found my way into the circle (albeit: always looking over my shoulder) with lots of tutoring from Blair and James Kerr and others. At the peak of my career in the Worcester years I was reclassified as an open player by EUSPBA. I never competed as an open player. It was just about that time when I noticed a “stiffening” in my top hand. James always said if my bottom hand work was as good as my top hand I might have someday been a real piper! I got worried but not enough to really do anything about it as I was not interested in solo piping at the time and my band playing was good enough to keep me in the circle.

It started with an inability to play a clean g gracenote between short F and E after High A and progressed ultimately to clawing, inability to cover holes and (lastly) uncontrollable twitching (so that I play grace notes at inappropriate times) and can’t keep to even the simplest of tunes. Like you, I stopped playing altogether and did not play for nearly ten years. When I came back the problem was nearly gone and actually did not resurface for about a year. It progressed slowly over a couple years but, eventually, I experienced the worst of the symptoms described above.

I too went thru a variety of doctors and misdiagnoses. I wonder how many players have quit because they were told they had arthritis? You and I connected briefly several years ago, but, I was never able to locate your doctor who had moved to New England. I finally found an excellent specialist at Brigham and Women’s Performing Arts Clinic in Boston. Same message, no cure, no drugs (other than the evil botox); common problem for other musicians/few success stories. My doctor did offer some plastic rings that fit over the affected fingers and restrict the clawing. They helped for awhile, however, these didn’t help the twitching which I think is one of the later and more insidious symptoms.

I heard about Hamish Moore (noted in an earlier post) and learned that his FD problem was the same as mine (top hand) and I understand what he did was to shift up one finger so that the index finger is now the useless one and the pinky takes on the role of the E finger. He did not answer my email and so I only have this second-hand. I recently got a copy of his Stepping on the Bridge CD and I understand this was done after he converted fingering. It brought hope.


I was pleasantly surprised when I tried this technique and noted that I was no longer twitching, no longer having trouble covering holes. My clawing has disappeared; I am struggling with execution of taorluaths and crunluaths and some doublings, but, the more I practice using this technique the better are the execution of these movements. I will never be an open player, but, at least I can now play some simple tunes and I have some hope that I will be able to listen to myself play someday without breaking down out of frustration and despair. I am hoping this is a permanent solution and that the FD won't creep back into this latest attempt to avoid this dreadful disease.

This technique reminded me of a story I heard about John Burgess. I understand he came to Toronto somewhat late in life to perform in a concert and was being kidded by the local pipers as being an old man with arthritic fingers. The story goes that he took them into the back room of the armory where he planned to warm up and began playing jigs and hornpipes to the amazement of the young turks and then he took it one step further by switching hands and playing the same jigs and hornpipes left handed. Their mouths dropped and then he played the same selection again switching in mid-performance from one to the other. So...perhaps there is hope-even for us old dogs!

Sorry, I guess I went on for too long too. I hope I didn't bore anyone to death. This is a serious problem with pipers and musicians in general and the more we get out into the open with it the better off we will all be I am sure.

Thanks again for sharing. Yours was an uplifting story.

[Chris Hamilton]

Oops, on further reflection I'm deleting Stalin from my "inspirational comments" ...

Apart from being a extraordinarily not-nice guy, his INFLEXIBLE stand-fast policy nearly destroyed the Soviet Army in 1941 (granted his tenacity in 1942 on the Volga was monumental).

Anyway, in dealing with crises of all types, FLEXIBILITY is needed (I'm a Libra, so I'm all things to all people :D )

Flexibility regarding repertoire, technique, and expectations. For instance, if your affliction means you can't play Tune X in competition, then don't play it! If you can't execute a grip from a quick B to C, then try a plain G gracenote. Maybe it's not acceptable for competition, but in a band or non-competitive setting, it works fine. And flexibility to relax and accept your changed situation.

So, adapt and evolve, that's what I was trying to say.

Chris

[Chris Hamilton]

Hi Jim,

Keep on truckin' ...

The doctor in question is Richard Norris ... and here's a link to his book:
The Musician\'s Survival Manual (http://www.mmbmusic.com/MMB/musSurvival.html)

Video and Contact Info (http://www.cello.org/Newsletter/Articles/videoreview.html)


Try a Google search on "richard norris dystonia" and you'll find a lot of info.

Chris

[Chris Hamilton]

Originally posted by Kevin F. Gilstrap:
Remarkable story, Chris, with a happy ending to boot! Very encouraging to us all! Thanks! Thank you, Kevin. I have been very fortunate in that I've been able to play again.

Which reminds me of a favorite quote:

Spock -- "Random chance seems to have operated in our favor."
McCoy -- "In plain, non-Vulcan English, we've been lucky."
Spock -- "I believe I said that, Doctor."

:woohoo: <<<<---- Note that this seems to be an evolved Tribble - note the recently sprouted limbs! I guess the poisoned grain didn't kill them, it just made them adapt! Like we dystonians must adapt.

And I'm perfectly sober as I write this - imagine me after a couple of cold ones. :wink:

Chris

[haganjp]

Hi all,

I got the following out of a paper entitled "Focal Dystonia: Current Theories". It can be found at the following link;
http://www.immm.hmt-hannover.de/pages/lit/lim_etal_2001_HumMovSci.pdf

I apologize for the length of the post, and it's probably more technical than most people care for. You have to endure a lot of medical terms, etc., and alot of doesn't necessarily apply to musicians, but it provides alot of insight as to what the perceived causes are and possible ways of treating focal dystonia.

A couple of excerpts from the paper that I found interesting as it relates to musicians include;

(on pg. 5) "The symptons displayed by musicians depend upon the type of instrument played, rather than hand dominance. For example, dystonia occurs more frequently in pianists and guitarists, particularly in the 4th and 5th fingers of the right hand for pianists, and in the 3rd finger of the right hand of guitarists."

(also on pg. 5) "The hand is a biomechanical instrument; its proper functioning depends on the functional integrity of the nervous system, joints, muscles, and tendons. In a group of 14 musicians with focal dystonia, Wilson et. al. (1993) found a relation between the limitations of passive and active abduction ranges of the central digits of the hands; ... They concluded that a specific biomechanical condition in the hand can interfere with movements that are required of musicians while playing an instrument."

and it goes on ...

"They found that connections between tendons restrict the movements of the connected fingers in typical ways, for example, by causing conjoined movements of the fingers, as tendons of one finger pull with them tendons of the other. These restrictive movements suggest that biomechanical limitations may constitute a risk factor for developing focal dystonia."

(and on pg. 7) "Furthermore, increasing the duration and intensity of practicing or playing aggravated the dystonic symptoms. These results are consistent with the idea that some aspects of focal dystonia are associated with peripheral nerve damage."

OK, OK, enough of the depressing stuff ... the paper goes on to address treatment approaches. For example,

(pg. 25) "A novel treatment approach ... is based on the principle of "constraint induced movement therapy" in stroke patients. In this approach, patients are encouraged to used the partially paralyzed limbs while movement of the non-affected "healthy" limbs are actively constrained (such as placing them in a splint or cast) ...

"In musicians with focal dystonia, this approach has been applied with some success. The finger that is considered to be "compensating" for the dystonic movement is fixed, while the "dystonic" finger is required to carry out repetitive exercise. Improvement was reported in 8 of 11 patients. There was considerable short-term improvement, however, long-term improvements were not so common."

or,

"Based on the assumption of cortical dysplasticity (neural consequences of rapid, repetitive movements leading to central somatosensory degradation) being the main pathology of focal dystonia, a prospective treatment trial on a mixed group of patients with focal dystonia was conducted (Byl & McKenzie, 2000). The authors used various methods of sensory re-training and visual mirror feedback in addition to physiotherapy for strengthening the hand muscles. The patients improved significantly in obtaining motor control, accuracy, sensory discrimination, and physical performance."

-------------

As for myself, I struggle with a dystonic (ie. "lazy") pinky finger on my right hand (lower hand). Much like Chris, I'm usually able to hide it pretty well, but it occasionally rears its ugly head with the B finger lifting up while lifting the pinky finger. It's most annoying when the pinky finger is preparing for a birl (double-tap). When it starts acting up, I switch to a slide birl, and the problem goes away. Unfortunately, for me, I've always found the slide birl to require alot more effort (ie. strenuous) than the effortless double tap (which I learned as a kid).


Jim

[Stuart Cassells]

This is all great stuff folks!!!!
This is the help and support which makes bobdunsire.com such an excellent site!!!

Jim, could you elaborate on the following as to how this could apply to a piper and what exercises could help

"The authors used various methods of sensory re-training and visual mirror feedback in addition to physiotherapy for strengthening the hand muscles. The patients improved significantly in obtaining motor control, accuracy, sensory discrimination, and physical performance."

What do they mean by sensory re training? How could that apply to pipers?

Thanks very much

[haganjp]

I'm not sure what they mean, but the reference in question is as follows;

Byl, N.N., & McKenzie, A. "Treatment effectiveness for patients with a history of repetitive hand use and focal dystonia: A planned, prospective follow-up study", Journal of Hand Therapy, pp 289-301

Now as far as who Byl, N.N. is ... I tracked her down on the Internet and I believe it is Nancy Byl, who is a professor at University of California San Francisco (UCSF) - San Francisco State University (SFSU). You can usually write to the author to get a copy of the paper.

You might also refer to the following web site for information about her work.

http://itsa.ucsf.edu/~ptprog/faculty.html#nancy

Jim

[scotchboiler]

Just hearing about this scares the hell out of me. The question I have is, is this largely the result of too much practice, poor technique, genetic susceptibility, or some combination of all of these?

Chris, how much were you practicing before this happened? How has your practice schedule changed as a result?

I never feel like I practice enough, but seeing this, I wonder if the trick is to make the most from the relatively least amount of practice.

[Kevin F. Gilstrap]

Originally posted by Chris Hamilton:
[QUOTE]

And I'm perfectly sober as I write this - imagine me after a couple of cold ones. :wink:

Chris If you're planning on coming to KC again for Winter Storm IV, I'll buy the first round! :thumb:

[jd3214]

Nice info Jim. I will follow up. Scotchboiler, I was practicing at home at least three hours a day and more often it was like five hours a day and then there were the several band practices each week. If your not eating, drinking and sleeping bagpipes, you probably don't need to worry.

I am sure the beer and whisky consumed after each pracitice didn't help, but, I can't blame the mother of all nectars for this problem (like so many other problems in my life). I really think it was the practicing that did it.

I am interested in the notion that Jim set forth about the hand being a biomechancial instrument. I did notice is that my eczema (heavy duty stuff on my top hand) started at about the same time as my FD and I have always wondered if there was any relationship. Anyone else with this disease also have eczema? Mine is so bad that the skin cracks and bleeds from time to time and there is little I can do but wait it out.

Isn't it amazing that we do open heart surgery robotically, cure some forms of cancer and we still don't know the answer to eczema or FD. These days, it would seem to be within the realm of our scientific knowledge base!

[Matt Buckley_dup1]

Originally posted by jd3214:

I heard about Hamish Moore (noted in an earlier post) and learned that his FD problem was the same as mine (top hand) and I understand what he did was to shift up one finger so that the index finger is now the useless one and the pinky takes on the role of the E finger. He did not answer my email and so I only have this second-hand. I recently got a copy of his Stepping on the Bridge CD and I understand this was done after he converted fingering. It brought hope.Hamish's FD came on very soon after recording of
Stepping on the Bridge. At the 1995 Vermont SSP School, it came on with a depressing vengence, and many of us watched, painfully, as Hamish's playing deteriorated.

By 1999 Hamish was experimenting with use of the left-hand pinky in place of the ring finger, and by the summer of 2000 he was able to make his public debut of the new fingering style at my wedding. :thumb:

As many of you are probably aware, Hamish is now playing regularly with Fin by using the pinky. He does amazingly well with it.

[Matt Buckley_dup1]

Originally posted by Chris Hamilton:

The B finger is not designed for fine motor movements, it's designed for power and gripping. Making it do all these detailed minute movements on the pipes (or other instrument) is very unnatural.This is a very important point, one overlooked by many pipers. My wife is a Feldenkreis (TM) practicioner - a disclipline that addresses fine motor movement, repair post-stroke, and related issues. She has stated, many times, while watching me play that pipers are asked to do with their hands/fingers many things that are very unnatural and possibly even harmful, the ring fingers in particular on both hands.

My problem became evident over a year ago when my instructor, Donald Lindsay, noticed an odd twitch whenever I used my left-hand ring finger, a twitch that seriously affected my GDEs and tourluaths (Hey Chris - remember those gawd-awful tourluaths two years ago at Manchester?). A year later, I've made tremendous progress, with the assistance of Donald, my wife and a couple of other sources. A few things to be aware of:

1. DON'T FORCE IT!!!!! Less is more. The second the problem movement begins,
stop. Switch tunes, switch movements, take a break, or use a substitute movement. The important thing is to stop.

2. Find an appropriate substitute. . For me, on those days when my ring-finger is not cooperating, I substitute my index finger. That means that GDEs become GDGs, and my tourluaths end with G gracenote rather than an E. But the sound is very similar, and blends in well with the band. I can now play jigs at 100 bpm using, amazingly, GDGs.

[Alex the Prophet]

Hi all,
I don't actually suffer from the ilness but I know someone who does and my dads line of work gives me access to a lot of info.
I thought I would write down some of the stats I have heard or read about from good souces which haven't been posted.
Susceptibility to FD is linked to age. It seems that you are extreemly unlikely to develop it if you are under the age of 30 (read near impossible). In most cases it affects people in mid-life. You also need to be quite a serious musician as is obvious from the previous posts. You won't get it through anything less than near professional level of play/practice. From what I have read FD is basically something that can affect anyone who is doing anything at a certain level: sportsmen, surgeons, artists etc (but it goes under a different name in other fields sometimes). Its just that musicians are a high risk group. We are nutters. Medically. No one comes close to the kind of stress dedication and intensity that musicians get to (exept certain athletes for which the problems are similar). So your chances of developing it are in between 1-200 and 1-500 if you fit the mold: in mid-life and very good. Its not really sure wether or not there is a genetic susceptibility but generally speaking pretty much evering does to a certain degree.
As for the actual cause of FD, its thought and verified in most cases that its a problem with the brain. Basically the part of the brain that is supposed identify parts of your body has merged or blurred the "image" it had of you hand/fingers. This can lead to random ability to lift a finger i.e. you want to lift your ring finger but it doesn't move 40% of the time or an other finger moves instead because your brain has no knowledge or partial knowledge of your finger existing. Or maybe it thinks that your ring finger is your middle finger or the other way around etc. This is also why it varies so much and is therefore difficult to diagnose.
So to cure it you would have to totally re-educate your brain to move your hand and fingers. Its a bit like starting over. Exept psychologicly much more demanding.
I think that the visual mirror feedback part of haganjp's post elluded to therapy involving sitting in front of a mirror and playing with your good hand to give your brain the illusion that your bad hand works. A lot has been tried to help it. Because its the nervous system's failure, the symptoms are lightened by wearing gloves or in some way reducing the sensation of playing. Unfortunately, it seems that for the minute the only shot at getting back to former glory for the people affected is through years of rehabilitation and dedication. Thankfully some make it.

Hope this helps someone,

Alex

[Chris Hamilton]

Originally posted by AVettas:

Susceptibility to FD is linked to age. It seems that you are extreemly unlikely to develop it if you are under the age of 30 (read near impossible). In most cases it affects people in mid-life.I was not quite 26 when it started. However, between my odd claw-grip on the chanter, heavy computer work, and piping in general, I was "bound to get it" as my doctor said.

Chris

[Alex the Prophet]

Ah ok. Good to know how accurate these articles and books are. :wink: (either that or you are a very special person :cool: )
Thanks for that,

Alex

[Chris Hamilton]

Originally posted by AVettas:
(either that or you are a very special person :cool: )
The One and Only! :D

I am unique, there's no question. Eccentric, unique, it's all the same!

Chris

[Thomas Zöller]

Hi guys!

I have researched a bit on the internet as well, and came across some names that might be useful:

First of all, there is a German Prof., who treats musicans with focal dystonia in various ways. The interesting thing is, that he studied both music and neurocology, so he knows what a musicians go through when they suffer from this. His name is Altenmüller - a contact can be obtained from http://www.hmt-hannover.de/sys/subnavi_forschung.htm

Then, there is a Dutch guy called van de Klashorst, who founded the Dispokinesis therapy. I have recently had contact with one of his students (cellist), who fully recovered from focal dystonia. You might have to file for this guy on the net - I do not have a contact yet. Anybody interested might email me in a couple of weeks.

Furthermore, an American lady called Barbara Conable, which you can contact via the homepage www.bodymap.org (http://www.bodymap.org) - there is also an article published on focal dystonia on this webpage.

Finally, there is a guy in France called Phillippe Chamagne, who succesfully seems to treat with a body therapy, which seems to be comparable to Alexander technique - no contact again so far.

Hope this is of interest!

I would appreciate, if more people who have any kind of experience with this subject matter would join the discussion and share of information

Best wishes,
Drones up,
Thomas

[Alex the Prophet]

Yes, I think the Alexander Technique could be a good way to start. Wether you have focal dystonia or not actually. It will definately get you playing properly. Its way too hard to put into words what they (Alexander teachers) can do for you but I suggest that you try it.

Alex

[Steve Brittain]

Although I am unaware of any hard evidence (such as functional MRI or PET scan) to prove this model, I think acquired focal dystonia can best be thought of as a problem with the programing of motor control circuits in the brain. In other words after multiple repetitions (particularly forced repetitions) there is a change in the way the motor control neurons interact which results in unwanted ?dystonic? muscle contractions. Once those new pathways for motor control are established, it is very hard to reestablish a new ?correct one?.

It is very position and movement-specific. For example I have friend who has dysonia in one hand when playing the fiddle but not when using the same fingers for playing his guitar or flute. The implication of this is that by altering how you play a certain tune (substituting different movements or even fingers such as mentioned in some of the earlier posts) you can work around the problem and make good music. The risk is that if you aren't careful how you use the new movements, you may develop a second dystonia involving more that the original finger.

One way to at least temporarily ?unlearn? the dystonic movement is to stop doing it altogether, such as happened with Chris. I read of an interesting and radical approach to this aspect of the therapy, in which musicians had the misbehaving arm put in a cast for a month so that they couldn't move the fingers and hand at all. When the cast was removed, there was of course atrophy of the muscles. The hand had to be retrained but when it was, the dystonia was gone in almost all of them.

Again the risk is that if you are not very careful with how you retrain the hand, the abnormal movements may be relearned, because those abnormal neural pathways are presumably still latent in your brain. This is where I think a Feldenkrais or Alexander practitioner could potentially help a lot as their's is a very different and more ?mindful? approach than standard physical therapy.

So no easy solution, but with a fair bit of mindful work and following the advice mentioned in several posts of relaxing and not forcing, it may be possible to keep making music.

take care,

Steve

[Thomas Zöller]

Hi Steve!

"Although I am unaware of any hard evidence (such as functional MRI or PET scan) to prove this model, I think acquired focal dystonia can best be thought of as a problem with the programing of motor control circuits in the brain."

Altenmüller, a German professor for neurocology has shown, that in the brains of people with focal dystonia, the usually seperated regions controlling the fingers (5 in each half of the brain) have merged, and that therefore the brain can not distinguish between those fingers anymore.

"I read of an interesting and radical approach to this aspect of the therapy, in which musicians had the misbehaving arm put in a cast for a month so that they couldn't move the fingers and hand at all."

Where did you come across this article?!

Best Wishes,
Thomas

[Barry Conway]

I have been diagnosed with Focal Dysdonia.

At first, this problem was missed diagnosed as a tendon problem. Because rest did nothing to help this, surgery was recommended. I had the surgery and it didn’t help.

As it turns out, the pain in my forearm was being caused by an attempt to control a dysdonic finger. (ring finger, right hand) after much practice, I learned to move the finger somewhat laterally instead of up and down. This required a lot of work but, I was able to continue playing.

Last summer, I noticed the problem staring on my left hand. It hadn’t gotten to the point of affecting my playing but, I could see the involuntary twitch starting.

After an EMG, I was diagnosed with Focal Dysdonia and referred to Dr David Childress at Brigham’s & Women’s Hospital in Boston. After an e-mail exchange, he referred me to Dr Richard Ledderman at the Cleveland Clinic as they work together on the study of Focal Dysdonia in musicians.

I was asked to be part of a study. The idea was to splint the dysdonic hand and allow the brain to rewire itself. This was an option I liked as it was not invasive. (Splint from fingers to elbow) I had the splint on for 6 weeks last fall. This hasn’t done much to cure the dysdonic finger and also caused some problems with flexibility in my fingers.

Also being done is a process where all fingers are immobilized except the dysdonic finger. Daily, the dysdonic finger is exercised for 2 hours. Initial findings are good but, the closest place they are doing this treatment is in Chicago.

I was referred to a specialist for Alexander technique. This deals with re-posturing as well as approaching movements in a different manner. I didn’t pursue this as I was told it takes a great deal of timeto go through the process. With three kids, a business to run, and the season approaching, I thought I’d try Botox.

I had my first shot of Botox the first week in May. It seems to have helped quite a bit. So far, I’m very happy with the results.

Barry Conway

[Thomas Zöller]

Hi Barry!

How is your left hand affected and which fingers are?

How is the treatment with Botox done? Are there any side effects?

What did you do when you retrained yourself to move your finger of the bottom hand laterally; how long did this take you to relearn?


Best wishes for your treatment!!

Thomas

[Barry Conway]

Ring finger on right hand started some time ago. Ring finger on my left hand less than one year.

Botox was injected into the muscle groups that control the contracting or bending of the ring finger on my right hand. (Injection into forearm and the palm of my hand---the injection into the palm hurt quite a bit)

To retrain my hand? Just practice and concentration and trying to survive.

Thanks..the treatment seems to have done a lot of good.

Barry

[JRM]

For those actually diagnosed with this...how did they arrive at the diagnosis? What were the key indicators? I've always put my finger problem down to possible arthritis, maybe tendon damage or carpal tunnel, but the "feeling" never really fealt like any of those to me. Now I'm wondering if this might be the problem. started in my late 20's. I was fantatical about practicing and competing.

me - right hand, ring and pinky -- have a tendency to move as one at times. result...crappy birls ( I used to make machine gun birls!) tap drag style.

[Steve Brittain]

Bob,

The diagnosis is largely made by observation; though it can be confirmed with EMG testing. (This involves inserting a needle into various muscles and measuring the way they contract). With dystonia there are unwanted abnormal or extra movements/muscle contractions which occur while you are trying to use your hand. It may feel like a spasm or cramp in the muscle and the finger/hand/etc. will not do exactly what you want to to. In fact it may do something different or beyond what you want it to.

With arthritis you are more likely to have pain and stiffness and with a pinched nerve tingling, numbness and possibly weakness.

It is something that your local neurologist would (hopefully) be able to sort out for you.

take care,

Steve

[JRM]

Thanks for that Steve. Your description sounds more in line with what I experience. I never really had it checked out becuase I couldn;t explain what the "feeling" or the result was. My doctor not exactly knowledgeable or interested in musician related problems. It really became a problem when I reached open level and I quit competing competely and then quit playing for a few years. After reading what some of you have written, I may look into further diagnosis and treatment.