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#2066997 - 04/19/13 09:33 AM Focal dystonia
NikkiPiano Offline
Full Member

Registered: 02/05/10
Posts: 172
Loc: Hertfordshire, UK
I believe I'm developing the beginnings of focal dystonia. I stopped piano practice for a week over the Xmas holidays. When I returned to practice my fourth finger on my right hand felt uncoordinated. I focused a bit more on my fourth to get it back under control.

However, in the last few weeks I've noticed my fourth and fifth fingers curling under when doing certain complex movements. Also, playing forte octaves in my right hand causes my reach to collapse to a 7th. Generally, my fourth finger keeps feeling very strange. I have no problem moving my fingers independently. No one would suspect anything wrong, except for me, as it is, currently, a very subtle problem.

My piano teacher has only now been made aware of it and is doing research on the condition, if it is FD even.

Can anyone give me advice on what I can do to resolve or ameliorate the condition?

Thanks in anticipation.

Nikki

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#2067047 - 04/19/13 10:45 AM Re: Focal dystonia [Re: NikkiPiano]
Nikolas Offline
5000 Post Club Member

Registered: 11/26/07
Posts: 5021
Loc: Europe
Nikki,

I'll be honest that I wasn't aware of focal dystonia, but I read a little bit in wiki and it seems almost terrifying to me! smile

Best of luck!

(and I'm bumping this thread a bit on the top, so that others can see it)
_________________________
http://www.musica-ferrum.com

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#2067057 - 04/19/13 11:09 AM Re: Focal dystonia [Re: NikkiPiano]
pianovirus Offline
500 Post Club Member

Registered: 04/24/07
Posts: 940
Loc: Basel, Switzerland
Hi Nikki,

here is a clinician in Germany who has been treating people with focal dystonia for years. I don't know about the UK, but for sure he would know colleagues over there.

http://www.immm.hmtm-hannover.de/en/institute/people/eckart-altenmueller/

From what I have heard and read, at least the symptoms can be controlled right now by botox injections. Leon Fleisher is one of the most famous pianists affected by this condition and he could resume concertizing after initiating this treatment.

But I'm not at all an expert on this, just trying to help as I can understand how truly distressing the situation must be for you, or any dedicated pianist. I hope the situation will resolve by itself; my best wishes!
_________________________
youtube.com/user/pianovirus

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#2067065 - 04/19/13 11:19 AM Re: Focal dystonia [Re: Nikolas]
NikkiPiano Offline
Full Member

Registered: 02/05/10
Posts: 172
Loc: Hertfordshire, UK
Originally Posted By: Nikolas
Nikki,

I'll be honest that I wasn't aware of focal dystonia, but I read a little bit in wiki and it seems almost terrifying to me! smile

Best of luck!

(and I'm bumping this thread a bit on the top, so that others can see it)


Thanks Nikolas. Terrifying, isn't it? That's why I'd like to nip this in the bud before it gets worse. I had never heard of focal dystonia before this week. I'm not sure what other neurological condition this could be. I have no pain. It seems this condition is often triggered when the normal regime of practice is interrupted or technique is modified. Maybe, I've been over practicing for some time and it's all caught up with me after the week's break.

To get an idea of how bad this can get if one ignores the condition:
Leon Fleisher: 'My life fell apart...'

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#2067071 - 04/19/13 11:24 AM Re: Focal dystonia [Re: NikkiPiano]
mermilylumpkin Offline
Full Member

Registered: 02/08/13
Posts: 121
I'm so sorry. I have nightmares about this. It sounds like maybe movement retraining would be possible if it hasn't progressed very far. If you can afford it, I'd look seriously at Alexander Technique training or Taubman Golandsky or Feldenkrais or whatever is available in your area.

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#2067075 - 04/19/13 11:31 AM Re: Focal dystonia [Re: pianovirus]
NikkiPiano Offline
Full Member

Registered: 02/05/10
Posts: 172
Loc: Hertfordshire, UK
Originally Posted By: pianovirus
Hi Nikki,

here is a clinician in Germany who has been treating people with focal dystonia for years. I don't know about the UK, but for sure he would know colleagues over there.

http://www.immm.hmtm-hannover.de/en/institute/people/eckart-altenmueller/

From what I have heard and read, at least the symptoms can be controlled right now by botox injections. Leon Fleisher is one of the most famous pianists affected by this condition and he could resume concertizing after initiating this treatment.

But I'm not at all an expert on this, just trying to help as I can understand how truly distressing the situation must be for you, or any dedicated pianist. I hope the situation will resolve by itself; my best wishes!


pianovirus, thanks for that link. Coincidentally I just posted a link to Leon Fleisher.
I'm in control of this problem at the moment. Thanks to the internet I know what this could be and have been made aware that it could get worse if I take no measures to adjust my practice and playing. I'll see what research my teacher has done when I see him on Monday. I know how freaked out he was when he saw my fingers curling.

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#2067090 - 04/19/13 11:54 AM Re: Focal dystonia [Re: NikkiPiano]
Praeludium Offline
Full Member

Registered: 12/19/11
Posts: 90
Loc: Besançon, France
The guitarist David Leisner (former teacher at New England Conservatory, now teaching at Manhattan school of music if I remember well) cured himself from focal dystonia by reeducating himslef completly. He changed his technique...

http://www.youtube.com/watch?v=KqxI4uSkB9w
http://www.davidleisner.com/

I'm talking about this even though he isn't pianist because I've read about bottox injections, etc. but it seems much more durable and healthy to completely erase the source of the problem if you can. I just wanted to say it was possible and some people did it. Good luck with your recovery.


Edited by Praeludium (04/19/13 11:54 AM)

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#2067317 - 04/19/13 08:40 PM Re: Focal dystonia [Re: NikkiPiano]
jdw Offline
500 Post Club Member

Registered: 03/04/11
Posts: 808
Loc: Philadelphia, PA
Nikki,
This can be a scary condition, but I think it's good that you're paying such close attention while it's still subtle. I know a number of people have recovered from focal dystonia using the Taubman approach to technique. I don't know if there are teachers in the UK familiar with this, though the Golandsky Institute just held a workshop there.

There are several reports on their site from former dystonia sufferers (http://www.golandskyinstitute.org/about/dystonia). I was particularly struck by Barbara Banacos's report of her experience:
http://www.golandskyinstitute.org/about/dystonia-entry/barbara_banacos.

I don't know her, but I study with her teacher and have had great recovery from my own injury. I had tendinitis and ulnar nerve compression, not focal dystonia, at least not diagnosed as such--but in retrospect, I think some strange behavior of my 5th fingers might have been heading down that path.

You might want to consider an online consultation with them, at least to get some advice going forward. Feel free to PM me if you have questions.
_________________________
1989 Baldwin R

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#2067340 - 04/19/13 09:31 PM Re: Focal dystonia [Re: NikkiPiano]
sophial Offline
3000 Post Club Member

Registered: 04/11/05
Posts: 3409
Loc: US
Please don't mess around with this getting advice on the internet! Go see a very good neurologist and get medically evaluated immediately. In the meantime, you would probably want to take it easy and not push it.

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#2067362 - 04/19/13 10:31 PM Re: Focal dystonia [Re: sophial]
jdw Offline
500 Post Club Member

Registered: 03/04/11
Posts: 808
Loc: Philadelphia, PA
Originally Posted By: sophial
Please don't mess around with this getting advice on the internet! Go see a very good neurologist and get medically evaluated immediately. In the meantime, you would probably want to take it easy and not push it.



I can agree with the advice to take it easy and get a medical evaluation. But I think Nikki is wise to look beyond this also. I have a healthy respect for doctors (am married to one in fact), but the truth is that they do not have all the answers, especially when it comes to musicians' injuries.

If I had listened only to the doctor (and I saw a highly respected hand specialist who treated a lot of musicians), I would not be playing today. He knew hand surgery, but he didn't know how you need to move at the piano to avoid and heal injury.
_________________________
1989 Baldwin R

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#2067364 - 04/19/13 10:33 PM Re: Focal dystonia [Re: sophial]
laguna_greg Offline
1000 Post Club Member

Registered: 04/02/13
Posts: 1166
Loc: guess where in CA and WA
Sophial, I think you are making a good suggestion.

However, very few neurologists have ever seen any dystonia patients clinically. Most have only heard of the disease but never seen any cases, as it's quite rare and barely recognized as a work-related disorder. It's very hard do find doctors who have actually treated any cases. So you'll need to do research to find somebody who really knows what they're talking about.

But having said that, an accurate clinical diagnosis is essential to recovering from such an injury. It has been my experience that you can find clinicians with some experience at university teaching hospitals, preferably those who have a department of music medicine. Focal dystonia can strike anybody and any body part. Dystonia occurs in flutists, for example, who get it in their lips. I consulted on a case once with a percussion student at CalArts who had a dystonic upper right arm whose symptoms were brought on by certain passages and textures. I've worked with several stenographic court reports over the years, for example, who developed dystonia in their fingers.

Nikki, I was a student and teaching assistant at the Taubman Institute in the 80s and 90s. I work clinically with musicians and industrial workers in California who get RSIs of the upper extremity. I've seen 2,000+ RSI cases over the last 20 years. And if you have the chance to talk to the folks at either the Taubman Seminar or the Golandsky Institute, you really should. They probably have the best handle on such a problem you'll find anywhere, and the most consistent good outcomes. Botox only works as a palliative, so it will relieve the symptoms. But it will not make them go away, and the side-effects are a problem. You'll need to develop a comprehensive treatment plan that includes the right kind of rehabilitation strategy/physical medicine. The Taubman people can help you with that part of it.

If I can be of any help, send me a message here and I'll be happy to share what resources I have with you.

Good Luck!
_________________________
Laguna Greg

1919 Mason & Hamlin AA
1931 Bechstein C
http://www.triangleassociates-us.com/about_us (my day job)
http://en.wikipedia.org/wiki/Dorothy_Taubman (a recent article I wrote about one of my teachers)

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#2067382 - 04/19/13 11:28 PM Re: Focal dystonia [Re: NikkiPiano]
Ted Offline
1000 Post Club Member

Registered: 04/03/02
Posts: 1500
Loc: Auckland, New Zealand
I still don't know if what I had was dystonic or not. I began experiencing an involuntary, cramp like sensation in my left index finger. It was neither visible nor audible but it felt terrible. It took about three years to get rid of it and required a great deal of daily discipline and relearning of my technique. The successful strategy, in the end, was quite complicated and highly individual, but I now play much better than I did before. I somehow suspect that it was a repetitive strain acquired through habitual, tiring, incorrect movements in the vicinity of an old injury, and was not automatised in the brain, which I understand is the case with dystonia.

Whatever your injury is, something will have to immediately change in your playing habits, at least that is what I found very early on. The changes necessary are probably so personal to you that advice on the internet is futile and possibly negative. Try to find a piano teacher experienced in these problems. They are rare but they do exist.

No harm in eliminating medical explanations, but if it occurs only in piano playing then the answer probably lies there too.
_________________________
"It is inadvisable to decline a dinner invitation from a plump woman." - Fred Hollows

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#2068532 - 04/22/13 09:30 AM Re: Focal dystonia [Re: Ted]
NikkiPiano Offline
Full Member

Registered: 02/05/10
Posts: 172
Loc: Hertfordshire, UK
Thanks for all the replies. You've given me much to think about.

I still suspect I may have the early stages of FD. The experiences of many is that they don't get help until their playing is drastically compromised. I can still rest all my finger tips on a table and raise each digit independently, which is a problem for FD sufferers.

I don't practice in the mornings, but I had a piano lesson this morning and the condition seemed less present. I had no problem hitting octaves. When I practice at home in the evening and play those ff octaves, my right 5th finger starts twitching and soon starts pulling in towards the palm. Arpeggios seemed better. Perhaps tiredness has some input or maybe it was my very heightened awareness of the condition.

Well, my teacher forgot about researching the topic. I forgive him. He has many health problems at the moment. He's going to talk to a neurosurgeon this week, if he remembers... He wondered whether it was actually carpal tunnel syndrome. I dismissed this as I have no pain whatsoever.

I'm going to take it easy at the moment, slow everything down to the point the symptoms disappear and remove autopilot from practice keeping painfully attentive to the form of the hand. I will talk to my GP, but I won't be able to demonstrate the problem without a piano.

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#2068607 - 04/22/13 11:31 AM Re: Focal dystonia [Re: NikkiPiano]
jdw Offline
500 Post Club Member

Registered: 03/04/11
Posts: 808
Loc: Philadelphia, PA
Nikki,
Resting all the fingers on a surface and raising each one independently is a movement I would definitely avoid for someone who is having any hand issues at all. I'm glad you're able to do it, but that doesn't mean it's good for you. This is one of the first things I learned in Taubman training. You don't need this isolated finger movement to play the piano well!

Take care of yourself! I agree with you that involuntary twitching or curling is very worrisome and sounds like FD.
_________________________
1989 Baldwin R

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#2068628 - 04/22/13 12:06 PM Re: Focal dystonia [Re: jdw]
Praeludium Offline
Full Member

Registered: 12/19/11
Posts: 90
Loc: Besançon, France
Hmmm.. I never understood why finger articulation was supposed to be so bad.
When I reeducated myself with a physiotherapist who had also been trained at La Clinique des Musiciens, worked a lot with musicians (including many conservatory teachers...), she made me work on changing some bad habits of my 5th finger which could cause things like focal dystonia at the long term : lack of figner independance (it was with classical guitar ; you don't use your fifth finger at the right hand).
So I did independance exercices in order to train my brain to differentiate my two fingers. As far as I understood focal dystonia might be about your brain not being able to distinguish all your fingers separatively when you play.
Finger independance doesn't mean unhealthy and brutal movements...

Anyway, Nikki has already been told to go to see someone who's specialized about that (if she were french I'd tell her to go La clinique des musiciens, ("the musician's hopsital" or something along those lines) : someone who is trained as a physiotherapist/doctor and specialized in musician's injuries.
I'd like to make clear I was just trying to share my opinion about this finger articulation thing, no more.

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#2068657 - 04/22/13 01:18 PM Re: Focal dystonia [Re: laguna_greg]
ClsscLib Online   content

Platinum Supporter until Jan 02 2013


Registered: 03/14/08
Posts: 1605
Loc: Northern VA, U.S.
Originally Posted By: laguna_greg
...an accurate clinical diagnosis is essential to recovering from such an injury. It has been my experience that you can find clinicians with some experience at university teaching hospitals, preferably those who have a department of music medicine....

If I can be of any help, send me a message here and I'll be happy to share what resources I have with you.

Good Luck!


Very helpful post, Greg. Thanks for taking the time to write it.
_________________________


"People may say I can't sing, but no one can ever say I didn't sing."

-- Florence Foster Jenkins

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#2068828 - 04/22/13 06:14 PM Re: Focal dystonia [Re: Praeludium]
NikkiPiano Offline
Full Member

Registered: 02/05/10
Posts: 172
Loc: Hertfordshire, UK
Originally Posted By: Praeludium

Anyway, Nikki has already been told to go to see someone who's specialized about that (if she were french I'd tell her to go La clinique des musiciens, ("the musician's hopsital" or something along those lines) : someone who is trained as a physiotherapist/doctor and specialized in musician's injuries.
I'd like to make clear I was just trying to share my opinion about this finger articulation thing, no more.


I'm giving my piano teacher until Monday next week to make some contacts. I prefer to work this problem through with my current teacher. We have a good relationship. I have a feeling I will have to wind the clock back a little or more. Anything I'm practising now may be a cul de sac. Funny, after a few hours practice my typing has gone askew too.

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#2068899 - 04/22/13 09:09 PM Re: Focal dystonia [Re: NikkiPiano]
jdw Offline
500 Post Club Member

Registered: 03/04/11
Posts: 808
Loc: Philadelphia, PA
You may want to look into dictation software to avoid the extra strain on your hands from typing. The voice recognition is now quite accurate for most general purposes (like posting on the Piano Forum, but also any ordinary prose in English). I used dictation (Dragon software) almost exclusively while I was injured. Now I can type again, in moderation. Some people even find that they prefer the dictation, once they're used to it.
_________________________
1989 Baldwin R

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#2069148 - 04/23/13 06:56 AM Re: Focal dystonia [Re: Praeludium]
jdw Offline
500 Post Club Member

Registered: 03/04/11
Posts: 808
Loc: Philadelphia, PA
Originally Posted By: Praeludium
Hmmm.. I never understood why finger articulation was supposed to be so bad.
...
Finger independance doesn't mean unhealthy and brutal movements...


This may be a matter of terminology, but I wouldn't at all say that articulation is bad, or even "independence," if that means getting each finger to respond and do exactly what it needs to do. So I sort of agree with you. But it's the focus on moving of individual fingers *while attempting to hold everything else still* that has gotten people into trouble.
_________________________
1989 Baldwin R

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#2069219 - 04/23/13 09:20 AM Re: Focal dystonia [Re: sophial]
Frito Offline
Full Member

Registered: 05/09/11
Posts: 141
Loc: Eastern US
Originally Posted By: sophial
Please don't mess around with this getting advice on the internet! Go see a very good neurologist and get medically evaluated immediately. In the meantime, you would probably want to take it easy and not push it.


This is the best advice on the thread. And yes. There are Neurologists who are expert in focal dystonia. Wishing you the best.

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#2069255 - 04/23/13 10:38 AM Re: Focal dystonia [Re: NikkiPiano]
Kreisler Offline



Registered: 11/27/02
Posts: 13707
Loc: Iowa City, IA
Just to reiterate what others have said, please refrain from diagnosing yourself.

I would find either an orthopedist who specializes in the hand or a neurologist with neuromuscular training. This is one of those things that overlaps a couple of different medial areas, so it may take a bit of research to find the right person.

My guess is that you'll get some kind of EMG testing along with a complete history and physical to help rule out other things. You'd be amazed at how many little things, some serious, some not, can cause neuromuscular problems. Everybody tends to self-diagnose Focal Dystonia and Carpal Tunnel rather quickly because they're well-known in the musical community, but there are lots of other things out there. (My wife works in neuromuscular medicine, and there are a lot of things that have very similar symptoms or unusual presentations.)
_________________________
"If we continually try to force a child to do what he is afraid to do, he will become more timid, and will use his brains and energy, not to explore the unknown, but to find ways to avoid the pressures we put on him." (John Holt)

www.pianoped.com
www.youtube.com/user/UIPianoPed

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#2069405 - 04/23/13 03:27 PM Re: Focal dystonia [Re: NikkiPiano]
Euphonatrix Offline
500 Post Club Member

Registered: 08/14/06
Posts: 518
Loc: Hessen, Germany
NikkiPiano,
since you seem to live in Britain, you might find some help here
They specialize in performing arts medicine.
Good luck and speedy recovery!
_________________________
"The creative process is nothing but a series of crises."
(Isaac B. Singer)


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#2069789 - 04/24/13 07:00 AM Re: Focal dystonia [Re: NikkiPiano]
vers la flan Offline
Full Member

Registered: 02/13/11
Posts: 139
Hi Nikki,

Sorry to hear about your issue. Not to take away from the good advice already posted, especially the caution to seek the opinion of a professional, but I found a short article online which touches on the subject with some interesting insights. You can read it here:

https://www.scientificamerican.com/artic...-under-pressure

Best of luck in your recovery!

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#2069805 - 04/24/13 08:13 AM Re: Focal dystonia [Re: NikkiPiano]
NikkiPiano Offline
Full Member

Registered: 02/05/10
Posts: 172
Loc: Hertfordshire, UK
Wow, you guys are insanely helpful. I didn't expect so much wonderful advice. I'm looking at all the options.

I saw my GP who said would refer me to anyone of my choosing. She's aware of focal dystonia, but wasn't quite sure who to refer me to other than a hand surgeon. There isn't a quick fix and recovery is going to take some time, so I need to think carefully about my next move.

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#2070430 - 04/25/13 04:56 AM Re: Focal dystonia [Re: NikkiPiano]
NikkiPiano Offline
Full Member

Registered: 02/05/10
Posts: 172
Loc: Hertfordshire, UK
I was not going to, but I'm now getting my GP to refer me to a hand surgeon or neurologist. Last night, after a few hours practice I started feeling tingling in my 5th finger. That's a new phenomenon. My 5th finger coordination was taking a nose dive at that point, no longer holding any curve, with my finger flat and bending only at the knuckle whilst stabbing at keys. I'd like to rule out any carpal tunnel syndrome or compression of the nerves elsewhere and then take it from there.

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#2070611 - 04/25/13 11:58 AM Re: Focal dystonia [Re: NikkiPiano]
sophial Offline
3000 Post Club Member

Registered: 04/11/05
Posts: 3409
Loc: US
Very glad to hear you are doing this!! Please keep us posted on what happens.


Sophia

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#2072381 - 04/27/13 07:40 PM Re: Focal dystonia [Re: NikkiPiano]
laguna_greg Offline
1000 Post Club Member

Registered: 04/02/13
Posts: 1166
Loc: guess where in CA and WA
Hi Nikki,

If you need to go see somebody right away and you can't get to a music med specialist, you could ask to be referred to an occupational or industrial medicine specialist. Typically, they see hundreds of cases of occupational upper extremity injuries and won't think you're crazy. They'll be able to do all the preliminary assessments, and start any immediate first-aid right away. If what you have is an entrapment issue, they'll be able to find that out PDQ. They'll also test you, as Kreisler said, for type II diabetes, and osteoarthritis, and rheumatoid/autoimmune conditions, et cet., just to make sure those things aren't causing your problem.

In the meantime, stop practicing. Seriously. My mom always said, "Does that hurt? Then stop doing it!" So does every doctor and physical therapist I ever met.
_________________________
Laguna Greg

1919 Mason & Hamlin AA
1931 Bechstein C
http://www.triangleassociates-us.com/about_us (my day job)
http://en.wikipedia.org/wiki/Dorothy_Taubman (a recent article I wrote about one of my teachers)

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#2072385 - 04/27/13 07:49 PM Re: Focal dystonia [Re: Praeludium]
laguna_greg Offline
1000 Post Club Member

Registered: 04/02/13
Posts: 1166
Loc: guess where in CA and WA
Originally Posted By: Praeludium
Hmmm.. I never understood why finger articulation was supposed to be so bad....


Salut Prae!

It's not that finger "articulation" is bad per se. It's the way it's traditionally taught that can cause problems.

I just wrote a digest of Taubman's technical approach for wikipedia. It briefly explains the issue seen from the standpoint of best practice as opposed to injury, but I think you'll understand what Taubman meant. You can find it here:

http://en.wikipedia.org/wiki/Dorothy_Taubman

bon weekend, et a la prochaine!


Edited by laguna_greg (04/27/13 08:06 PM)
Edit Reason: showing off
_________________________
Laguna Greg

1919 Mason & Hamlin AA
1931 Bechstein C
http://www.triangleassociates-us.com/about_us (my day job)
http://en.wikipedia.org/wiki/Dorothy_Taubman (a recent article I wrote about one of my teachers)

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#2072387 - 04/27/13 07:51 PM Re: Focal dystonia [Re: ClsscLib]
laguna_greg Offline
1000 Post Club Member

Registered: 04/02/13
Posts: 1166
Loc: guess where in CA and WA
ClasscLib,

Thanks so much for the kind words!
_________________________
Laguna Greg

1919 Mason & Hamlin AA
1931 Bechstein C
http://www.triangleassociates-us.com/about_us (my day job)
http://en.wikipedia.org/wiki/Dorothy_Taubman (a recent article I wrote about one of my teachers)

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#2075220 - 05/01/13 07:01 PM Re: Focal dystonia [Re: NikkiPiano]
hujidong Offline
Full Member

Registered: 04/30/13
Posts: 64
Loc: Hawaii
Could this be caused by lack of independence of the fingers, and then constant usage of those fingers in awkward practicing..the likes of playing pieces or passages over and over instead of picking them apart to attempt to develop independence?? The symptoms that I am seeing from this forum could point to some kind of overuse of the nerve which controls our 3-4-5 fingers when it doesn't develop enough independence between the fingers to handle the rigorous duress of autonomous practicing..? It could be a factor maybe..??

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