Cancel concerts, focal dystonia(?)

[pianowolfi]

I'm about to cancel all my concerts for the next couple of months due to beginning fokal dystonia (i think that's what it is.) It has begun 6 years ago while I was practising like 50 repeats of each piece per day for a performing examination. Shortly before that I've had a middle ear inflammation and had to take cortisone pills. The side effect of these was a weak and trembly state of my right hand. And that has never been like before since. Don't know if it has st to do with what happens now, but maybe yes. False programmation of brain during practise sessions on cortisone? Since then it has come and gone. Allways when I was under pressure to learn a program for an upcoming concert it went worse. And after the concert it went better after a few days until almost normality. But now it seems to get really serious, because the crampy movements of the middle finger enlarge over the first finger, sometimes also over the other fingers. I still can play pretty well but I don't want to make it worse. Now i need to find new ways to come back to a normal state. Or search new ways of musical activities. I think during the next months I will do no rehearsals, no concerts, just play for myself as far as possible. And teaching of course. And look for a good therapy.

[pianistimo]

never heard of it - but it sounds awfully similar to arthritis.  one of my husbands relatives had that going on with her toes. 

ps i hope you get better soon!

[pianistimo]

i tried to google some information for you, but all that came up was 'gibberish.'  distonia spasmodik dan tortikolis dilakukan pembedehan.  now, if i was from india - it would make perfect sense.  i once had an indian doctor. 

get a snake bite.  that will cure you.  (just kidding).

seriously, there's some therapies that give you worse stuff to make you feel better.

[arbisley]

This might be a solution. It was an article in the National Geographic which I found particularly interesting about toxines.
In particular, it talked about a pianist who hadn't been able to use his right hand for years due to focal dystonia. He now plays normally with an injection of botox (a poison) every six months.
Here's the link:
https://www7.nationalgeographic.com/ngm/0505/feature1/multimedia2.html

You can probably find out more about how to receive the injection somewhere.

Happy searching (hope it gets better soon)

Arbisley

[arbisley]

You could also have a look at this:

https://rarediseases.about.com/gi/dynamic/offsite.htm?zi=1/XJ&sdn=rarediseases&zu=http%3A%2F%2Fwww.dystonia-foundation.org

there's a little "contact" icon at the bottom.

arbisley

[pianowolfi]

Oh yeah I know about this botox thing. But I'm sure I won't let someone do that with me. I'm sure that would, in my special case, not make things better. I think there is another therapy, that is based on learning different movement patterns or "deprogramming" the wrong ones, that might be better.

Snakebite? Why not. Sometimes nature offers the best medecine.

[arbisley]

The question is wether it's really focal dystonia or not. I think you might try it out though, or at least have it tested. And why "do that with me"? Surely no one would actually do something stupid and kill you or some such. Anyway, the second website in case you hadn't looked still has other info about the disease, and of course they check that it's been properly diagnosed etc.
Apparently it's a bit expensive though....
By the way, how can you be so sure that it would make it worse? Are you a doctor or something?

Oh, and then there's always the very useful google search if nothing else helps, and I don't see why people on this forum would know any better.

[pianowolfi]

Sure, I'm googling around. It's just that I don't like the thought that somebody injects paralysing poison into my arm. *Shiver* All my instincts speak against that. And sure I will try to find some doctor who can do the right diagnosis. And now I feel already better because i have begun to cancel concerts. So there will be more rest and less pressure and stress during the next time. Time to find new ways....

[franz_]

@TS:  This must be terrible. Are you a professional pianist so? How many concerts are you doing in a month/year?

[thalbergmad]

Pianistimo uses Botox for her wrinkles, so she knows what she is talking about.

For once.

Hope you find a quick cure.

Give up the Schumann. Bad for the hands.

Warm regards

Thal

[pianistimo]

i have never used botox in my life.  thal, where do you get this information?  now, if i were you - i would not listen to this 'don't play schumann,' stuff either. 

i am completely au natural.  when i get old, i intend to be proud of it.  but, as it is now, i stand on the old lady in church that said i look 21.

i have three washed pillows to use on thal.  one has stuffing coming out of it already. 

[pianowolfi]

@TS:  This must be terrible. Are you a professional pianist so? How many concerts are you doing in a month/year?

I' am mainly a piano teacher, fortunately not living from concerts. I give concerts occasionally as chamber musician, accompanist and a few solo concerts. i regularly work with a flutist, a violinist and several cellists (they don't have time, so we change them often). Additinally I do some choir accompanying and accompanying in a school for 5 hrs a week. All this I will be able to continue, except the performing and the rehearsals in chamber music. It's hard though because I like the performing very much.

[pianowolfi]

Pianistimo uses Botox for her wrinkles, so she knows what she is talking about.

For once.

Hope you find a quick cure.

Give up the Schumann. Bad for the hands.

Warm regards

Thal

 

Haha, I don't play Schumann currently, I play Rach and Albéniz and Chopin. But randomly Schumann suffered from FD, so better I avoid to make his practise mistakes...

[pianistimo]

who's side are you on, anyway!

[thalbergmad]

i stand on the old lady in church that said i look 21.
 

Oh, you had to stand on her to get her to say it.

Thalxx

[pianowolfi]

Oh, you had to stand on her to get her to say it.

Thalxx

I'd really like to see you both doing a pillow fight live!

btt: I've actually cancelled all concerts and rehearsals. I feel strange now. The first day since 24 years I don't think "I should practise!", sort of relief. Sadness too. But currently more relief. My right hand acts weird even when I'm typing this.

[thalbergmad]

Do you think you should cut down on the cycling as well?

Even the best corked handlebar tape, dont protect the hands completely.

Thal

[pianowolfi]

oh no, I don't think so. I haven't done much cycling the last few months. And it has to do more with the cns than with the hands.

[pianistimo]

no.  i did not have to stand on her to get her to say it.  she has bad eyes to begin with.  but, nonetheless, you are very mean thalbergmad.  you have no idea how many times i go off in a huff and only return to more of your meanness. 

if i were to have a pillow fight, i would hit thal in the head - which is his weakest body part.  if hit hard enough - the stuffing might not come out of the pillow, but his head.  yes.  i would hit thal.  but, then fearing repercussion , would also aim for that spot right behind the knees.   sort of a quick 'one, two.'  head, knees.  i am known for speed in almost everything.  ping-pong.  pillow fights.  no one can really beat me.   

ps  where's mayla?

 

[pianistimo]

pianowolfi,  i liked that pic of you and the guy dressed in white.  i forgot his name - but he looks like a sort of 'bin laden' of pianists.   with all your musical friends, i'm sure you'll get some good ideas of what doctors to see and what to do about this situation (besides praying).  prayer is good...but i think God does help those who help themselves.  i've never been one to just sit back and wait totally.  i try to do what i can.  it may be something dietary, too?  you never know.  maybe check a mutitude of counsel? 

will keep googling to look up stuff.  i do remember the national geographic article that someone mentioned and forgot that it did mention fokal dystonia.  wonder if there are any other sites or doctors mentioned in the article.  not that i'd want a snake bite or anything.  just curious what they've found out.  maybe there is a site that is exclusively for people with fokal dystonia. 

and, as someone else said - you might luck out and have symptoms that are only SIMILAR to it - and not the actual thing?!

say, down below there is an ad for somekind of shock treatment.  you can give yourself shocks with electrolysis.  perhaps that would shock the muscles into relaxing again?  the worst i've had is occasional leg cramps.  i think when i bicycle for long miles and don't take in enough protein or minerals - it makes the body look for it in bone?  do you think?  i used to drink these protein shakes - but since a couple of years ago have cut back on milk.  i eat a lot of yogurt.  not sure if protein would help your muscles or not. 

[thalbergmad]

she has bad eyes to begin with.   

That explains why she thought you were 21 then.

Thal

[pianistimo]

my husband and i played some music for her last weekend.  'the lord is my light' with the rousing piano accompaniment.  i could get her to say anything when we play her favorites.    she's a sweet lady.  and yes.  she's the only one that thinks i'm twent-one.  but i've passed for 30 many times.  i'm 15 years older than that.  so, i think hmm. not too bad.  the only time i look old is when i'm tired.  i just stare off into space and my kids have to do the hand thing over the eyes.

[thalbergmad]

Just post a picture and i will give you my honest opinion about your age.

No more excuses woman, just do it.

Thal

[pianistimo]

thal, i don't have a scanner.  i hate to bother my neighbor again.  he does that thing where you get a digital image into the right format.  i don't know a thing about getting this done.  besides... whose going to pose me?

pianowolfi, did you know that taking certain drugs/medications can cause a similar effect to dystonia.  i read this (after scrolling down a bit) on this site:  www.emedicine.com/pmr/topic235.htm

also, they said that many different things can cause dystonia like symptoms - that range from mild to parkinson's like diseases.  they are listed above the medical induced similar effects part.  suggestion was to get tested for each of these things, too, and see if it is not something else.

i hope for you that it is cureable.  this article explains alternative therapy to botox.  physical therapy of a sort.  i think they put splints on various fingers (alternating).  not sure of the safety of this procedure.

www.pnas.org/cgi/reprint/100/13/7942

i wonder if you went a happy medium and just got some plaster of paris and made your own 'partial' splint and made it sort of curved.  so, in effect, you have half the finger (to mid-middle knuckle ) and made it curved but still effective to keep the finger from doing anything beyond that. 

go into some health food stores and ask about nutrients, too.  with all your musical energies going into your fingers - maybe they are begging for a break.  maybe some hot/cold therapies and 'tiger balm' which works wonders on sore muscles.  don't know if they carry it anymore.  hope that with rest - you just get better and it doesn't reappear.  you are probably doing the best thing by resting!  good thing you are not pushing through it.

[pianowolfi]

Thanks pianistimo, for all that care, i'll look it up. Don't be tooo busy with my case. I'm pretty ok since I cancelled concerts. I feel I badly need a break. I just play for myself and very carefully. And I already got a med from somebody. Will try it.

haha, Scherbakov should be pianistic Bin Laden? I'm not sure if he would appreciate that But he told me the joke of Bin Laden who visited Pisa and saw the leaning tower. he looked at it and after a while he said despisingly: "Amateurs!"

[pianistimo]

ahahah.  i'll tell that one to my husband.  he's going to paris soon.  *i'll be posting alot then, won't i? 

[ramseytheii]

ahahah.  i'll tell that one to my husband.  he's going to paris soon.  *i'll be posting alot then, won't i? 

Oh gawd.... please, can't he take you with him ?!?!

  

Walter Ramsey
 

[pianistimo]

i wish.  you may wish, too.  but, wishes don't make horses.  or something like that?  (was that out of cinderella)? 

bibbdy bobbidy boo - cute french outfit - instant language recognition - ticket to go with hubby - children at babysitters - cat sitter - mail delievery stopped - gardener on duty - and no terroist plot to blow up the plane. 

[zheer]

  Well fokal dystonia,can be either genetic,ie from birth, it could be drug related ie medication and its side effect, or as it seems in your case something to do with viral infection,ie bacteia you mentioned the connection between your ear infection and your RH,well apparently the nerves round your ear my be disrupted.

  If it is genetic there is nothing that can be done, on the other hand the other two i mentioned can be fixed and the problem will be solved. Anyway a good person to see would be a doctor and a physical therapist. Good luck and sorry to hear about that, hand injury has effected many pianists and many of them recovered including Rahmaninoff.

[pianowolfi]

  Well fokal dystonia,can be either genetic,ie from birth, it could be drug related ie medication and its side effect, or as it seems in your case something to do with viral infection,ie bacteia you mentioned the connection between your ear infection and your RH,well apparently the nerves round your ear my be disrupted.

  If it is genetic there is nothing that can be done, on the other hand the other two i mentioned can be fixed and the problem will be solved. Anyway a good person to see would be a doctor and a physical therapist. Good luck and sorry to hear about that, hand injury has effected many pianists and many of them recovered including Rahmaninoff.

Thanks for your interest, zheer. Well, the genetic version can be eliminated in my case, at least i hope so. I don't know of a case in my family, and there are and have been many active musicians. You mean, this ear infection could have spread over the brain regions that are responsible for the right hand? That's an interesting possibility. It was an infection of the left middle ear and the doctors told me that it had progressed already   into the inner ear. I don't know if that's close to the motoric centres for right hand though. What I noticed was, that my right hand felt very trembly and weak after I had taken these cortisone pills.
Rachmaninoff had a hand injury? Was it fd or something else? Currently I don't remember.

[zheer]

What I noticed was, that my right hand felt very trembly and weak after I had taken these cortisone pills.

  Your doctor should know about that, he or she may then prescribe you different medication, if not you may have to wait for the ear infection to heel so that the medications are no longer needed.It does'nt sound like an injury related to piano playing,therefore not clear what the root to the problem is. Anyway time will tell, good luck.

[pianowolfi]

  Your doctor should know about that, he or she may then prescribe you different medication, if not you may have to wait for the ear infection to heel so that the medications are no longer needed.It does'nt sound like an injury related to piano playing,therefore not clear what the root to the problem is. Anyway time will tell, good luck.

Oh no, that ear inflammation was six years ago, as i mentioned in my first post above. Then i had to learn very much and practised excessively. and there i got the first symptoms. I was kidding when i told my teacher: maybe i'm suffering from mad cow desease, my finger quivers. He calmed me down: "someone who can play the piano like you hasn't got mad cow disease!" And i'm sure without practising it would have gone completely.

[thalbergmad]

maybe i'm suffering from mad cow desease

I doubt if you are, but a regular poster here probably is.

Thal

[pianowolfi]

Good news: my doc can exclude brain tumors as well as MS and parkinson. puuhhh! But he said that it's in all probability focal dystonia. I'm taking meds from tomorrow. Then I've been at my craniosacral therapist today which was also very helpful as a first step. If you don't know what craniosacral therapy is: https://en.wikipedia.org/wiki/Craniosacral_therapy. I'm more into alternative methods currently. But I feel pretty well since three weeks without concert schedules. It simply was too much for me the last years. So my body sends alarm signals. I need definately a break and a less strained work attitude.

[pianistimo]

i've always thought the body was pretty amazing and believed my mom when she said that she had more help from a naturopathic chinese doctor in getting her rotator cuff in place (with massage therapy).  at first i thought - oh, yes, but in a few months she'll still get the surgery.  she never needed surgery.  in fact, she has full mobility now.  the doctors said she would have partial mobility. 

different topic, i know - but imagine that fokal dystonia could be the same.  a sort of fixing whatever is 'off' and also - as you said - giving your body a break when it sends 'signals.'

[pianowolfi]

The question is wether it's really focal dystonia or not. I think you might try it out though, or at least have it tested. And why "do that with me"? Surely no one would actually do something stupid and kill you or some such. Anyway, the second website in case you hadn't looked still has other info about the disease, and of course they check that it's been properly diagnosed etc.
Apparently it's a bit expensive though....
By the way, how can you be so sure that it would make it worse? Are you a doctor or something?

Oh, and then there's always the very useful google search if nothing else helps, and I don't see why people on this forum would know any better.

I decided to bring this topic back. Because I actually will undergo a Botox therapy, I have my first appointment next friday.

I have found a neurologist whom I can trust completely.

In the meanwhile, since this problem got acute in 2006, I have been very careful about playing, practicing, and so I was able to keep it at least on the same level. It did not disappear, but it didn't get worse either. But I am sure it would have gotten worse, had I continued my practicing/concertising/chamber music/accompanying activities like before!!

[furtwaengler]

Oh man, Wolfi, I hope all goes well. I'm sorry you've had to deal with this. 'Tis life...that deterioration of the mechanism. I wish we did not have to deal with these things.

[pianowolfi]

Oh man, Wolfi, I hope all goes well. I'm sorry you've had to deal with this. 'Tis life...that deterioration of the mechanism. I wish we did not have to deal with these things.

I am sure it will go well. It's quite safe. I will get one or two shots in low dosage. After that I need to wait for 3 months. Otherwise the organism might raise antibodies. And after these 3 months we will decide on how to go further

[thalbergmad]

Make sure you go into the right clinic and not one of those suicide places.

Seriously though old chap, I hope it all goes well.

Luv

Thal

[pianowolfi]

Thanks Thal, old chap  

[ted]

I am saddened to hear about this, Wolfi. Injections seem very drastic. Have you tried relearning, slowing down and so on ? A Japanese doctor has had impressive results using an extended discipline of nothing except slowing down:

https://www.sciandmed.com/mppa/journalviewer.aspx?issue=1166&article=1650

The New Zealand concert pianist, Michael Houston, succeeded in returning to full power following a severe dystonia in the outer fingers of the right hand. It took him four years and a team of people helping him but essentially it was done using relearning.

A couple of years ago the index finger of my left hand began striking when it shouldn't. The playing situations where it occurred were highly specific and I began to worry. Other people told me they couldn't see or hear any difference in my playing but I could feel something threatening and,over a long time, devised and implemented my own programme of relearning. The trouble has now all but disappeared but it took me an infernally long time to get rid of it. I am still uncertain whether I had a dystonia or not, but considering the way I play sometimes I wouldn't be surprised !

What about pianists where you are who have real experience of the problem and who have recovered or have brought about recovery in others ? The one here in Auckland who cured Michael Houston is slowly gaining an international reputation for her work in relearning. Rae de Lisle is her name. I think she operates from Auckland University. Why don't you write to her ? It would do no harm and she might know somebody in your country. Injections of chemicals just seem so drastic and risky as a solution to what is increasingly recognised as a breakdown of the learning process in the brain.

[pianowolfi]

Thank you Ted, these are precious recommendations!
I think after all it will be a combination of methods that will make the difference.
When I first encountered that problem back in 2006 (Well actually I know now that it had actually started long before, in 2000 already) I was in panic, searching for a different job, ready to throw everything away. That isn't the case anymore, although I am at the time experiencing a deterioration of the symptoms. Since years they occur also when I'm not playing at all, in rest, while doing household chore etc. And I am not even playing a lot.
I am not anymore afraid of these injections and I feel completely safe with the person who is treating me, he is very experienced and has worked with many pianists. And I feel I need to do something.

Anyway, I am aware of the deeper cause which is a call from inside, so to say a call from my own soul which tells me to keep consequently close to my path and not to dissipate my energies with things that are not on this path...and to learn a better stress management. Because after all it's not only the excessive practice repeats who cause the symptoms, but practicing under the influence of stress, anxiety, negative emotions etc.

[ted]

If the problem has spread to other activities then yes, maybe something deeper is involved and you should follow the advice of your doctor, especially if he is experienced with pianists. As I understood it, most truly focal dystonias rarely present during other activities, but my knowledge is obviously limited. It seems to occur mostly in those with a striving mentality and an intense desire to achieve, but then so do many other injuries which are not dystonic. Regrettably, many of the most talented individuals possess striving and achieving personalities - that is only in the nature of things - and it makes the best among us the most vulnerable. I imagine it must be supremely difficult for such personalities to become laid-back, serene and non-competitive after fighting their way into prominence, skill and so on, not to mention the sudden collapse of income if they are professionals.

Possibly I should refrain from comment altogether because I am so laid back with my own music that hardly anything matters. Perhaps it is exactly this placidity, this insouciance, which has protected me from the consequences of over forty-five years of extremely fierce and intense playing, save the odd minor symptom.

Please keep us posted on your progress, as I am sure all of us here are very concerned for you and hope for a complete recovery of the physical means of implementing your obvious talent.

 

[keyboardclass]

I know they've had success with Botox at the Hanover clinic.  Fleisher tried it I think but then found another route.  You want to see if you can get to Peter Feuchtwanger - often the solution to this type of problem has a basis in technique.

[pianowolfi]

If the problem has spread to other activities then yes, maybe something deeper is involved and you should follow the advice of your doctor, especially if he is experienced with pianists. As I understood it, most truly focal dystonias rarely present during other activities, but my knowledge is obviously limited. It seems to occur mostly in those with a striving mentality and an intense desire to achieve, but then so do many other injuries which are not dystonic. Regrettably, many of the most talented individuals possess striving and achieving personalities - that is only in the nature of things - and it makes the best among us the most vulnerable. I imagine it must be supremely difficult for such personalities to become laid-back, serene and non-competitive after fighting their way into prominence, skill and so on, not to mention the sudden collapse of income if they are professionals.

Possibly I should refrain from comment altogether because I am so laid back with my own music that hardly anything matters. Perhaps it is exactly this placidity, this insouciance, which has protected me from the consequences of over forty-five years of extremely fierce and intense playing, save the odd minor symptom.

Please keep us posted on your progress, as I am sure all of us here are very concerned for you and hope for a complete recovery of the physical means of implementing your obvious talent.

 

Yes I think that your temporary symptom has been a sign of beginning focal dystonia and yes you are so right in what you say about striving and achieving personalities.
I am so much a typical case, actually even more than I can believe, lol!

In some sense I am extreme. Which is a good thing if you can manage it. I need it but I know about the risks

 Through this dystonia I was actually in a paradoxical way forced to be more laid back during the last years.

[pianowolfi]

I know they've had success with Botox at the Hanover clinic.  Fleisher tried it I think but then found another route.  You want to see if you can get to Peter Feuchtwanger - often the solution to this type of problem has a basis in technique.

Yes Peter Feuchtwanger might be a prime address.

[scottmcc]

focal dystonias are weird and unpredictable.  I'm glad you've got a neurologist whom you trust, and one with experience treating other pianists.  providing medicine to a professional is always challenging, whether it be a sports physician for a baseball player, a laryngologist for a singer, or a neurologist for dystonias.  the expectations are just different.

I take it the planned injections are EMG-guided?  that's what we do in the head and neck.

by the way, if you want to open the rabbit hole and find out about a related condition, which is believed by many to be a focal dystonia of the larynx, google "spasmodic dysphonia." 

best of luck.  I'm interested in hearing about your results.

[pianowolfi]

Hi scottmcc, thanks for posting in   So you're a physician?

I don't know if it's with EMG or not, I guess yes. I will ask the neurologist. I know there are several forms of dystonia and related stuff, I know somebody who started as a clarinetist, got a focal dystonia (I think also in his larynx) He couldn't continue to play the clarinet but now he is a very successful conductor.

[scottmcc]

yes, I am a otolaryngology resident  (ears/nose/throat).  almost all neurologists will do emg guidance for their botox, because it's the easiest/best way to make sure the botox is actually getting to where it needs to be.  with truly "focal" dystonia, it's one little motor unit that is the problem, so you have to make sure that's what you're getting, and not the rest, since you want the hand to still work when you're done.

[pianowolfi]

Okay so this morning I got an EMG-guided injection of 10 IU Botox A into my right Musculus flexor digitorum superficialis. So far everything is very fine. The effect will appear after 4-7 days, so I need to wait what will happen.