Pianist with Focal Hand Dystonia - Can You Help?

A question on behalf of a pianist in the USA with focal hand dystonia. If you have experience with this, we both would appreciate your time in leaving a comment below. Thanks.
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Video dialogue as text for online translation:

I’d like to ask you a question, if I may, on behalf of a pianist in the USA with focal hand dystonia.

This affects his right hand only. As he plays, his 2nd finger curls under his hand uncontrollably and this gets progressively worse until has to stop playing altogether. You can imagine how frustrating this must be for him.

My fiend has tried a variety of treatments with various therapists, but so far nothing really seems to be helping him significantly. On good days he thinks perhaps it’s just a matter giving it more time. On other days, he’s less optimistic.

I confess I didn’t know about focal hand dystonia until he told me about his diagnosis and have since discovered it’s a condition that affects many musicians from guitarists to drummers, in different ways. I asked my friend whether he knew of any pianist specifically that had had focal dystonia and had been cured. He said he didn’t.

Both Leon Fleisher and Byron Janis’s struggled with arthritis and their respective stories are well known and documented here on YouTube. However, the condition and treatment for focal dystonia and arthritis seem very different.

So I’m making this video with the hope to put him in touch with a pianist that had been affected by focal dystonia but had been able to manage or cure it sufficiently to be able to play again as they had been able to do before, and hopefully get advice from them.

So if you have some experience with this, we both would much appreciate your time in leaving a comment below.

[oliviae]

I don't know anyone who has had focal dystonia, but I am a pianist recovering from carpal tunnel. I strongly suggest your friend looks into getting a piano teacher to retrain him in the Taubman Approach. It was developed in order to find out exactly how prodigies play and help other pianists, but it was also discovered to help pianists with all sorts of injuries and even stop future injuries. I have been retrained by my piano teacher and not only have I recovered quickly, but I sound better than ever. I will always suggest the Taubman Approach to any pianist because it works so well. I hope this helps your friend!

[BryanHo]

I'm a neurologist that specializes in movement disorders and have treated patients with this condition (collectively known as task specific dystonia, usually presenting as writer's cramp in most people).    In musicians, it is thought to be related to excessive practicing, particularly if starting relatively late (middle school age). It is a frustrating condition to treat since it deals with involuntary contractions of muscles and is not related to any underlying joint or muscle issue.  The conventional treatment is Botox injections in the affected muscles, though this can be tricky since there is a delicate balance of giving just enough to suppress the intrusive movements while playing but not otherwise confer weakness.  There has been some investigation in immobilization of the affected limb for an extended period which can sometimes "reset" the dystonia.  I'll admit I am not familiar with the Taubman Technique that has been mentioned but notably,  when trying to research this,  I find very little about what this entails and it is not mentioned in peer reviewed medical literature, so I'd be skeptical. I would recommend your friend, if he has not yet already, seek an opinion from a neurologist that specializes in movement disorders, especially one with an interest in this condition.  I think Cleveland Clinic has particular expertise in this field.

[NMIC]

Hey Paul! Love ur vids! As for the dystopia issue it's facenating it is his second finger, as usually it effects the fourth and fifth. It is theorized that Horowitz had some degree of it with his pinky in his right hand (as dystopia usually occurs in the hand) and is why it curls up many a moments in his playing. The things I do know about dystonia is that it isn't a death sentence and there are treatments and methods to help. First and foremost it is completely neurological condition. The wiring of your synaptic connectors in your brain get jumbled and that is why the uncontrolled motor responses occur. That being said it is with out a doubt technically possible to re train and unjumble the wirings in the brain because of neuroplasticity. But it is not easy. As dystonia develops over a long period of time and it will take an equally long period of time to work around it. Proprioreceptive treatments tend to help as they function on sensory stimulation. I recommend that your friend sees a specialist and finds a way to re learn technique that he has accumulated. Practicing horrendously slow all the time and being very concientious about the sensation he is experiencing will over time technically help the condition and re wire.

As for base treatment, Botox injections on nerve point sights help allot, and special pressure point massages have tremendous therapeutic value for the condition as well. (It is what good ol Leon did and why he is performing again though he is not cured)

Practice using the left hand for passages where you can use just this hand.to rest your right hand if you are having to perform.. there is allot of research occurring on this issue currently and more medical advancements occur every day.

The issue with the piano is you can not just switch hands on what you play. A drummer with focal dystonia changed the way she held her sticks and learned how to play with a new technique and she is all functional now. A guitarist went left handed with his bout and now plays professionally just as well. But these options are limited so on the piano it is frustrating. Also interesting enough I notice allot of people who suffer from this condition have a specific repitiore set geared towards the more finger strength heavy German composers.

Another thing I notice is the Russian school of technique generally in my experience has the fewest amount of injuries from its wholistic approach. So getting into Anton rubinstiens teaching lineage and technical facets would be good. I personally study with a professor who was a student of the lhevinnes at Julliard who hail from Russian technical lineage and I have never had a problem. I used to suffer from tension issues when I studied with a Germanic style teacher when it comes to technique.

Also Russian technique can play anything in my opinion. Look st gilels. Nuff said.


Hope ur friend gets into recovery and performs again soon, this could be in a way a door to other facets of musical performance such as directing conducting and pedagogy for him or her.

[ChooChooRose]

Wow! Thank you, Paul, for making this recording in an effort to help your friend. Several years ago I read Leon Fleischers book when I came down with wrist tendinitis. Fleisher suffered from focal dystonia and had a problem straightening one of the fingers of his right hand. After many many years of trying various treatments, including surgery, the final treatment of Botox injections produced remarkable results and he has been able to play with two hands. I’m not sure if the improvement is permanent and if he is still able to play with two hands. For me, I have battled wrist tendinitis for almost six years and tried several therapies. Presently trying the Felkenrais method. No improvement so far and the method seems weird, at best!

[hansmuller]

I'm sorry I can't help you (him).
But I recently had something on my wrists, and even X-Ray, 5 MRIs and the best doctors in the region could not find what's wrong and where it comes from.
It took about 1 and a half years with various treatments (none of which seemed to actually have an impact), and then it went by itself. That is, I continuously played very easy pieces (with pain), and as soon as it got better with these, I went one step up.
I wish him best luck and that he gets well soon!

[Lekhan]

I have seen people with movement disorders hugely benefit from yoga . Do try this option there is nothing to loose, it is not required to learn the complete dimensions of yoga, there will be specific yogic therapies for particular ailments, but make sure a genuine and renowned person is consulted.

[-qu]

look into fasical layer manual body work: his dystonia could be some variety of sclerotic (hardening) tissue, if not in the hand musculature only, then via *secondary/referred* fascial attachments, and adhesions, which can cause muscles to atrophy under the tight, rigidity of the hardened fascia. Note, when fascia becomes unhealthy (repeated otherwise benign-infection, injury, and then postural compensations, and on and on) the viscous layers congeal, dehydrate roughly-speaking, causing musculoskeletal-pain anywhere throughout the body: so, again, his hand may be the result of referred dystonia (coming from the armpit, say, where the pectoralis meets the scapula) from really anywhere. So, myo-fascial release techniques, asap/stat for your friend. It's painful work, but if disorder of the fascia is involved (MS-like symptoms, maybe from lyme-type infections, malarial, so many vector-pathways, so it's perhaps not the central issue, ofc, just mentioning), then breaking up the fascia, getting bloodflow back in and allowing any nerves impinged/entrapped in the rigidity of the unhealthy/hardened/sclerotic tissue may very well get them their life back, and see the dystonia gone! Wishing total wellness to ya'll. Inter-textual and total commiseration. You can do it! Peace...

[SortaPredictable]

Psilocybin from psychedelic mushrooms (not joking) can cause an increase in neuroplasticity in the neural pathways of the brain and equalize neuronal communication (often sophomorically called “ego death”) from overactive regions of the brain. Strongly used pathways usually grow stronger with time and apply limited neurological filters on certain physical activities. In the case of focal dystonia, the learned pathways that lead to focal dystonia would diminish enough for retraining to be possible. Ultimately, the practice techniques that lead to it in the first place could more effectively be replaced. Alternately (although less effective), Lion’s Mane, which contains a mycelium strand that promotes neuroplasticity (available in whole foods stores in the United States) are effective treatment in promoting neurogenesis in patients who are experiencing cognitive issues. Focal dystonia is a form of a neurological disorder from repeated patterns.

Again, I’m not kidding...

[CrazyEddieization]

Hi Paul my former trombone teacher help patients dealing with focal diatonia. She struggled with it herself and was able to cure it. Since then she has helped other clients (including pianists) cure focal distonia. One lesson she had mentioned that one of her clients was the White House pianist and that she was able to help him. If you are interested you can message me to get her information.

[gregorprozesky]

I had this problem. I made good experinces with a medical treatment by Prof. Altenmüller in Hannover ( Germany ) and a retraining by the pianist Laurrent Boullet in Berlin. But it needs time.

[monikawalo]

My husband is retraining with Emma. She started to post his videos regularly. You'll see description of 'pianist with focal dystonia'

[loremipsum]

I started having symptoms of focal dystonia short before you posted this video. At the time, I didn't realise I had this condition, but some days later YouTube recommended me your video and I began to suspect I had EXACTLY this problem.
Now it has been 9 months since my RH's fourth finger lost fine motor control and I can't play properly anymore because it feels weak and the worst are my scales: 4th finger gets paralysed when I have to pass it over my thumb. And if I force it, my 3rd finger sticks out.
I consulted a neurologist but it didn't help much, the FD diagnosis wasn't conclusive because I couldn't demonstrate my symptoms since they only happen on the piano, hence "focal"... lol -_-
I noticed that using Smartphones got my problem worse and cause me tremors, so I avoid them.
I started breathing properly while I play the piano and corrected my posture.
I started thinking about my right hand, focusing only on the finger I'm about to use and imagining it playing the note I need and only then pressing the key for real.
This started to help me... But I still have this creepy "cramp" =*(

[MrFrapado]

Paul, I have found this on Medscape, a very good medical website.

April 29, 2004 (San Francisco) — Botulinum toxin type A (Botox) treatments offer at least some benefit to nearly two thirds of patients with focal hand dystonia; however, many patients discontinue treatment due to dissatisfaction with results, researchers reported here at the American Academy of Neurology annual meeting.

[DoDo-dyfs]

I had tendonitis before and I went to Prof. Alan Fraser. He deals a lot with people who suffer under injurys from piano playing.
He is some sort of specialist in this topic.

[Oso]

I developed what I am now completely sure was a focal dystonia in my left hand around fifteen years ago although it was never officially diagnosed. I did not seek professional help but fixed it myself over four years. It took enormous determination and daily discipline but I managed it. I am certain that the cause was overly heavy and repetitious playing of Waller solos with rapid filled tenths I could not comfortably stretch. My left index finger began pulling outwards and downwards even during other movements and pretty soon the balance of the whole hand became distorted. I cannot begin even to outline my very complex method of recovery and as the condition is so specifically individual to do so probably wouldn't help anyone else anyway. Two main general recovery factors were improvisation and my Virgil Practice Clavier, a device now very unfashionable in piano pedagogy but without which I doubt I would be playing at all now. Improvisation, even physically demanding improvisation, was affected far less than repertoire, a truly puzzling feature, as one would assume movements are just movements whatever one plays. It was also important to retain optimism and enjoy whatever sounds I was capable of producing.

[brendahuntingspianostudio]

By the way, Leon Fleischer also had focal dystonia. It is likely that Gary Graffman also suffered from it, and recent research into videos of Glenn Gould's playing suggest that he may also have suffered from it.

[philipgreenwood]

I've started to get twitching in my left little finger. Started a week ago as my guitar practice has involved constant repetition of the same movements (I've played for over 30 years but never at this level of intensity).

What I was trying to do was move my fingers 1-2mm off each string with triplet pattern 312-321 312-321 and using the lightest fretting pressure possible (note 3 used the little finger). I think keeping the middle finger hovering just above the string was the problem.

Now, my ring and little finger are shaking left to right, so this is finger adduction and abduction. I was also doing dynamic stretching before practicing plus muscle tissue massage and static stretching after sets.

I've seen a few cures such as beta blockers, botox injections and even tiny wires inserted into the brain (no thanks).

Looking at the research has provided alternatives and some musicians have had to relearn technique from the very beginning. They have employed the larger muscle groups in order to reduce tension on the smaller muscles used for fine motor skills e.g. for guitar, I'm now focusing on tension in my anterior deltoid and pectoralis minor to pull the shoulder downwards.

More research points to overtraining which increases the parts of the brain dedicated to each muscle motor unit. The sensory mapping enlarges, so starts to fire impulses which overlap causing other muscles to contract.

I'd say it's early days for me. I will try to use these larger muscles to remove forearm muscle tension. I've also decided to overload my little finger with sensory feedback by attaching a coin to the finger pad. It's a way to reset the sensory mapping to create a hard border for the little finger (this is because I've seen some dystonia effects lessen by using specialist gloves).

Happy to provide more info if requested.

[santodomingo]

Yes, I can help - albeit a little late in the day.
The first unpalatable truth one has to accept is that there is no known medical cure for FD.  Research has shown that digital respresentation in the brain becomes smeared, resulting in loss of
discrimination. Some medical practitioners recommend injections of botulinum toxin into the affected muscle to inhibit muscle contraction. I believe that this is the worst thing you can do since when the toxin wears off you will be worse off than before. Other musicians develop strategies to cope, such as wearing a splint (bad) or changing movements, but the dystonia will always win
through in the end.

The good news is that recovery is possible. I was diagnosed with FD in 2005 having noticed my flexus policis longus muscle impairing playing since early 2004. For many years now I have been 100% free from dystonia despite a neurologist claiming that the condition was so bad she
couldn’t see me playing at an advanced level ever again. So much for experts!

The first thing your friend needs to do is to take digital film from many angles of his/her playing and freeze those frames where the contraction occurs. FD is always accompanied by compensation and it is these movements that must be identfied and eliminated.  In my case the compensation was dorsi-flexion of the wrist and extension of the index finger. When playing the musician is usually
unaware of these movements, hence why it is imperative to use film to find them.

CIMT - Constraint Induced Movement Therapy, now called SMT Sensory Motor Retuning - is a therapy where compensation is eliminated, if necessary by splints.during therapy Note that it is NOT the dystonic digit(s) that are splinted, but the joints or digits responsible for compensation. This is not normal therapy, which is a waste of time and money. The idea here is akin to the
treatment of stroke victims where the patient is forced to use the affected limb without compensation. I suggest your frind researches these techniques and identifies the compensatory movements, which will have become welded in the brain with flexion. If not already done then I also suggest your friend sees a hand specialist for mechanical problems as dystonia is often accompanied by conditions such as CTS. I had DeQuervain's tenosynovitis, cured by surgery. Whether a mechanical problem causes dystonia or vice versa is unknown.
There are various clinics that support SMT – most famously that of Eckart Altenmüller in Hannover, but I embarked on a course of home therapy without supervision. Fortunately I was able to prevent compensation without splints, working the thumb from the CMC joint in combination with unaffected digits and always keeping BELOW the threshold at which flexion is
triggered. Hand in hand with therapy is change - change of posture,  in awareness of the body as a whole and (possibly) change of technique. "What Every Pianist Needs to Know About the Body" is a good book an anatomy and how it relates to movement at the piano.

 Although improvements are noticeable after several weeks of Sensory Motor Retuning, complete recovery is usually measured in years and it wasn’t until 2009 that I was 100% free. But this is infinitely better than partial recovery or no recovery at all. The reason, I believe, why the majority of musicians – mostly professional - never fully recover, as I have,  is the inability to let go completely and take time out to thoroughly reorganise the digital tangle in the brain's somatosensory cortex.

[stutristanx]

Hi Paul my wife is a Fellow of the Royal College of Physicians specialising in Neurology--I will ask her tonight when she returns from clinic as this is a neurological condition

[mjt]

hi. i don't know if i suffered from the same thing, but it was the result of misusing a piece of construction equipt w/a death grip. i would wake up w/my ring finger curled up tightly & had to pry it til it snapped open, often painfully. it affected my guitar playing. it eventually went away after a few yrs. i would try a taking a highly absorbable patented curcumin extract like bcm-95. terry naturally uses it in many of their products, but there r other companies that use it. also u might try rubbing some dmso into it, but make sure ur not allergic to it. try just a tiny bit to c if u experience any side effects. dmso is easily absorbed into the skin & will carry anything mixed w/it, deep into the skin. so b careful that u don't have anything on ur skin that could b dangerous, if absorbed into it. hope this helps. good luck.