Focal Dystonia

[benessa]

An old friend of mine from long ago, the great and inexplicably largely forgotten virtuoso Rey de la Torre was also afflicted with focal dystonia. I mentioned this on some other thread a while back, where I learned that he also suffered from rheumatoid arthritis, a terrible and crippling disease, which apparently finished him for good. He ended his career teaching at the San Francisco Conservatory.

PC, This is the very first I've heard that Rey de la Torre may have had focal dystonia. It would be very important to me - and others - to have such an early reference. Are there any other sources which discuss this, any way to verify it? I don't want to mention anything on my blog that I'm not sure about.

[benessa]

Stevnpa,

THANKS for your post! I've been using a splint, but can't tell if it helps just while I'm playing or will make a difference in the long run. Blondie also mentioned playing with a glove and that's an intriguing technique I'll try next. I plan to PM both of you to discuss this further.

[Blondie]

I am currently undergoing treatment in London..

Sounds like you've been seeing Katherine Butler

[Blondie]

May I ask, how long did recovery take after you found the proper direction? Are all of your techniques back where the were: speed, arpeggios, tremolo?

When I committed myself 'properly' to recovery/retraining (the same thing, really) I started with the most basic RH patterns, open strings, IM, MA and IA, rest and free (rest on same string, free on adjacent) always working with a metronome and charting my progress. Its important to measure your threshold to ensure you stay below it, and at the these slow speeds its essential to work with a metronome.

I rebuilt everything, slowly adding different combos, over a period of about 18 months before attempting any repertoire and then started with basic studies (ones I hadn't worked on before) at ultra slow speeds, still continuing the exercises. Here was my baseline back then: IM -52, IA -33, MA -26. Thats maximum speed without symptoms, allowing the fingers to return by themselves, free stroke and one stroke per beat. Excruciatingly slow but if you try and rush it, try and fool yourself you can do it faster and all you do is reinforce the pathway that that is broken.

Its hard to answer your question directly because recovery is so gradual and some things take more time than others. Now, nearly four years after starting that concerted programme, I am still fine tuning and still do a lot more tech than I imagine someone at my level would (I am preparing for my diploma at the moment). I don't have any visible symptoms, nothing anyone would diagnose, but some things are still a little tricky. However I have the tools to finger things in different ways that are still 'legitimate' and still sound musical. On the other and, in some ways I am actually a better player than I was before. FD is a paradox sometimes. It was probably about 2 and a half years to get intermediate studies up to speed but even then things like Romanza took much longer as PAMI was a tough one to crack, particularly as I had played it for so long with P and I.

Tremolo is not yet at required tempo but is improving. Practicing tremolo does very little, but working on the building blocks between the fingers - all the different relationships to reprogram and rebuild that map - is what works. Thats an important principle, you will hit brick walls and you have to go round them.

The 'intense' relaxation you mention is a must, you must also remove as much of the mental pressure as possible.

Another little helping tool- try detuning your strings so that they are almost floppy, and play very gently. Forget about making music, concentrate on feeling the very gentle pressure of the strings on your fingers and just allow them to play with the strings without 'intruction' i.e. randomly. See if you can do that.

[stevnpa]

Yes, I've been a regular patient of Katherine's!

I've found that after using the splint/glove combo I can play the slow arpeggios without either, but I have to keep very relaxed and not push the speed-any tension and the fingers go back to their dystonic ways.

It's difficult to explain, but those who have suffered FD will know what I mean; my fingers just didn't feel 'right' now they feel 'righter', not back to the way they were but closer to that sensation.

As I said it's been 4 months since diagnosis and start of treatment, so still a way to go, but I'm feeling optimistic-and Katherine certainly helps!

Steve.

[benessa]

I've added a new post to my blog on focal dystonia.

http://www.kateclassicalguitar.com/more ... es-part-5/

[AndreiKrylov]

Blondie, I can't thank you enough for tremendous amount of information. You SHOULD write a book! I have noticed the common thread of slow practice/relaxation with others, as well. And I also have been thinking about making a chart and will try to find a way to post it or describe it - I'd appreciate suggestions for improvement. And have asked my husband to bring home some latex gloves from our restaurant. Once our little person begins full day school in the fall I should be able to get started in earnest.

It is very sad and sensitive subject... first I wish all people who have it will be healed and feel 100% again!
Myself I never had focal dystonia but I have a lot of problems (pain etc) with my back and some problems with my hands too and I found solution for myself.
1. I play mostly standing (moving) and that way my back is free from stress and with my back my spinal cord is free extra pressure too, that extra pressure because of body position when sitting can create inflammation of nerves and all kind of problems because of that...
2. I exercise every day and try to exercise same muscles (and other parts, nerves etc) as I use for guitar, but different way, I do chin ups, pull ups, stretching some lifting, etc, lot of swimming in summer and other exercises. Muscles, body, are created to work but when we do small repetitive movement many many times and not much else maybe they could contract just because it is a logical thing - they "adjust" to this particular work...
Therefore it is probably the best to keep yourself, your body in good shape in general to exercise and do some physical work...sometimes
I knew one guitar player in Russia who had this problem (as he told me he overplayed) at 28 with his right hand and less severe with left hand and he was not able to play at all for a while, but after that he exercised a lot and now at 46 he has a body o body builder... and no pain when playing...
But these are just my observations. I'm not a doctor or authority on it so if anybody have FD please go for advise to your doctor.
I play 42 years 4-5 hours every day, sometimes 10 hours
and exercise saves me ...
Good luck and let all natural and supernatural powers will heal FD for somebody who has it!

[benessa]

Andrei, You may be in better shape than any other guitarist! I see you're the type who cures everything with activity. I jog, walk/hike, do yoga, cross-country skiing, dance, and tons of outdoor activities with my child. Unfortunately, one's level of exercise is not known to have any relation to the acquiring or curing of focal dystonia. There are even some studies which are exploring if certain people may even be genetically predisposed.

Believe me, we're all looking for the magic cure. As in most important things in life, there are no easy answers.

[AndreiKrylov]

Andrei, You may be in better shape than any other guitarist! I see you're the type who cures everything with activity. I jog, walk/hike, do yoga, cross-country skiing, dance, and tons of outdoor activities with my child. Unfortunately, one's level of exercise is not known to have any relation to the acquiring or curing of focal dystonia. There are even some studies which are exploring if certain people may even be genetically predisposed.

Believe me, we're all looking for the magic cure. As in most important things in life, there are no easy answers.

Thanks Benessa! Yes it is very complicated and I don't even pretend that I have any definite answer to it... but certain level exercise is good for everybody, and when your spine is in free position it better than to have it twisted and under pressure for everybody too.
It is very hard to go to doctor in rural Canada, I never had a family doctor and in 13 years of my life there all I was able to get is to have one blood test and one x-ray. Even there were weeks when I had so much pain that I could not walk. After one of those weeks I was able to have x-ray... when they told me there is no cancer so I say I was not worried about cancer but why is pain? No answer. Later I sent x-ray pictures (of my chest and spine) to Russia and the doctor where looked and said - you have Degenerative disc disease http://en.wikipedia.org/wiki/Degenerative_disc_disease and your disks is almost completely destroyed (it was 12 years ago). Since then I exercise more but I'm trying to avoid any lifting (sometimes I have no choice but do it) I like chin ups and anything where pressure is not on my spine but on my muscles. I was born in not very healthy circumstances - my mother was very sick in that time... My life was very hard ( I spent few years in soviet orphanage, lived on the far north, had very poor diet, did extremely hard physical work etc.) so when somebody can talk about my shape it may look like a compliment but actually this is not true and if I'm in any shape at all it is all because of the way how I force myself to do things, to exercise, probably more by will than real physical ability...and by the way I'm not very young too... my son is going to have his PhD next year...
I apologise for bringing some personal experience in this subject and certainly all what I wrote is irrelevant and it is not worth any attention and I would not write anything regarding this subject anymore.
Good luck with your search and have a great time with guitar!

[benessa]

Thanks Benessa! Yes it is very complicated and I don't even pretend that I have any definite answer to it... but certain level exercise is good for everybody, and when your spine is in free position it better than to have it twisted and under pressure for everybody too.
It is very hard to go to doctor in rural Canada, I never had a family doctor and in 13 years of my life there all I was able to get is to have one blood test and one x-ray. Even there were weeks when I had so much pain that I could not walk. After one of those weeks I was able to have x-ray... when they told me there is no cancer so I say I was not worried about cancer but why is pain? No answer. Later I sent x-ray pictures (of my chest and spine) to Russia and the doctor where looked and said - you have Degenerative disc disease http://en.wikipedia.org/wiki/Degenerative_disc_disease and your disks is almost completely destroyed (it was 12 years ago). Since then I exercise more but I'm trying to avoid any lifting (sometimes I have no choice but do it) I like chin ups and anything where pressure is not on my spine but on my muscles. I was born in not very healthy circumstances - my mother was very sick in that time... My life was very hard ( I spent few years in soviet orphanage, lived on the far north, had very poor diet, did extremely hard physical work etc.) so when somebody can talk about my shape it may look like a compliment but actually this is not true and if I'm in any shape at all it is all because of the way how I force myself to do things, to exercise, probably more by will than real physical ability...and by the way I'm not very young too... my son is going to have his PhD next year...
I apologise for bringing some personal experience in this subject and certainly all what I wrote is irrelevant and it is not worth any attention and I would not write anything regarding this subject anymore.
Good luck with your search and have a great time with guitar!

Your story perfectly illustrates the power of the mind over any possible limitations of the body. It also speaks volumes about the human spirit, which is certainly relevant to music. As far as the value of your personal story, Andrei, I disagree. You should write your memoirs. No joke.

[ronjazz]

For dystonics, it's worth your while to check our Jerald Harscher's site The Poised Guitarist. Jerald has a practice in Cambridge, MA, treating guitarists with FD, and his methodology seems well-researched and solid. I am currently doing sessions with him, and I feel very positive about finally escaping this condition eventually.

[benessa]

For dystonics, it's worth your while to check our Jerald Harscher's site The Poised Guitarist. Jerald has a practice in Cambridge, MA, treating guitarists with FD, and his methodology seems well-researched and solid. I am currently doing sessions with him, and I feel very positive about finally escaping this condition eventually.

Ron, it would be very beneficial if you could explain something about your personal experience with focal dystonia, Harscher's methodology and in what ways specifically you have been helped. I have to say I have received a few messages to my site advertising Harscher's treatment, but I don't post the comments because no unique personal story is shared, nor is anything specific about his approach explained, nor is any conclusive evidence of a cure through his method offered.

Because the development of focal dystonia is a complicated and confusing process and so little understood, and because it's heartbreaking for the people who develop it, and because there are so few ongoing studies as to how to improve the condition, the aim of my website and this thread is to freely share people's stories and and all possible techniques they've learned to begin to overcome it.

[lagartija]

In another thread, I was reading in one post that Scott Tennant recommends "chunking" in that you think of your fingers moving together in groups and not individually. As this relates to FD, all the articles that I have read about this condition mention that some researchers think your "brain map" for your individual fingers becomes "blurred" and that leads to motion confusion and loss of control of individual digits and that somehow separating their function is key to overcoming the disability . If the poster is correctly stating Scott's view, what do you think of the idea of chunking? Do you think practicing in this manner could be a problem for people who might have a propensity for suffering from this terrible condition? Could thinking of your hand this way blur the brain map?
I understand the "gesture" idea of moving your fingers..... That is something I have done in the section of Asturias where you are playing triplets. And I'm not sure if Scott's idea is just a different way of saying " musical gesture" or whether he is advocating some sort of training where you play repetitive things by thinking in chunks... in the style of pumping nylon exercises so you can play faster.

[Blondie]

Do you think practicing in this manner could be a problem for people who might have a propensity for suffering from this terrible condition? Could thinking of your hand this way blur the brain map?
I understand the "gesture" idea of moving your fingers..... That is something I have done in the section of Asturias where you are playing triplets.

This is precisely how I got focal dystonia - endlessly playing the Asturias PIM 16th note triplets and consciously moving the fingers as one, planting IM as a unit at speed etc. It is a risk factor, I am in no doubt, along with other things. Like many conditions, the more risk factors you expose yourself to, the likelier you will have a problem. Read Jason Solomon's article where he discusses the same things (see what he says about planting):
http://www.dystonia-foundation.org/file ... stonia.pdf

[lagartija]

Do you think practicing in this manner could be a problem for people who might have a propensity for suffering from this terrible condition? Could thinking of your hand this way blur the brain map?
I understand the "gesture" idea of moving your fingers..... That is something I have done in the section of Asturias where you are playing triplets.

This is precisely how I got focal dystonia - endlessly playing the Asturias PIM 16th note triplets and consciously moving the fingers as one, planting IM as a unit at speed etc. It is a risk factor, I am in no doubt, along with other things. Like many conditions, the more risk factors you expose yourself to, the likelier you will have a problem. Read Jason Solomon's article where he discusses the same things (see what he says about planting):
http://www.dystonia-foundation.org/file ... stonia.pdf

Thank you for the link to that article, Blondie. It was very interesting. It sounds like he is making a recovery in that he can play with his quartet again.
I do not plant when playing the Asturias triplets, I use the sequencing technique (as you probably know from my response regarding this topic elsewhere on the forum), so the fingers are not touching strings at the same time, and the changing feel to the balance of the hand is similar to what Solomon recommends when he talks about using the larger muscles of the forearm. I don't plant my thumb when doing rest stroke, although I use the side of it to touch the bass strings lightly to damp them. Also, along with Solomon's recommendations, my practice is quite varied and takes place throughout the day (in at least two sessions) and not in marathon sessions of practicing just one technique. Much of what he recommends for prevention seems to be already a part of my playing technique, so that is reassuring. Much of what he says is in keeping with all of my martial arts training about awareness of excessive tension in muscles that are not in use and also in keeping with my yoga training.

But still, regarding my original question about ST's "chunking", isn't that doing exactly what Solomon recommends others to avoid? By thinking of the digits all as one unit?