Focal "embouchure" dystonia

[TubaRay]

I have been following this thread since its inception. It seems to me that both sides have a valid point. I believe there is a middle ground, however. There are individuals who have publicly confirmed that they have FD. Would it not be appropriate to mention their names in a public forum? I believe it would. If there are others who have not made the information public, and if it could potentially cause them harm, I believe it would be inappropriate to bring their names into a public discussion.

Does anyone agree?

[Rick Denney]

There are individuals who have publicly confirmed that they have FD.

The tricky part is whether this has really occurred. The good doctor previously mentioned gave a long presentation on the topic at the Army Conference. He is the only person that I personally know has publicly announced his condition. You were sitting next to me at the time, of course.

But for most who have suffered from the problem, a public announcement was never made, even if the victim made no real secret of it. So there's no way for the rest of us to know what has been publicly announced or not. Better to avoid it altogether to prevent an accident.

I think it highly appropriate to talk about the condition without talking about the individuals who have suffered from it. That achieves all the objectives stated by Doc.

Doc, I heartily and profoundly disagree with you on this one. Your position opens the door to grave risk of damaging the lives and reputations of people. My example previously of an engineer having a stroke is a good one. There is no moral issue there, either. But there is an issue of competence to do the job, and rumors about that can have a profound impact even on those whose competence is not affected. "I better not hire that guy for this gig because I heard from a friend of a friend that a list on Tubenet said he had focal dystonia." There need be no malice as in the case Wade cited. It can seem quite innocent except for the outcome. That is why gossip is a sin. And I reject your argument that it isn't rumor. Again, I only have personal knowledge of one person making a public announcement because I was there--for anyone not there it would be a rumor, and for anyone telling me about any other performer it would be a rumor. When newspaper articles discuss someone by name, then we can, too.

Talk about the disease, not about the people who have it.

Rick "who doesn't talk about ANYONE by name who is facing ANY medical issue in the absense of confirmable public documentation" Denney

[Chuck Jackson]

It always seems that whenever I come back to nose around, some stupid discussion comes up that makes me wish I hadn't. For all of you out there, sit down, shut up, and try to listen for once.

My name is Chuck Jackson and my playing career is over because of the onset of FD. Nothing is more mentally debilitating than waking up one day and discovering that the thing that you loved so much, enjoyed more than anything else, gave you a reason to smile, has gone away.

Imagine that you can't play, times it by 10,000, and you will know the agony of FD. I have had nightmares about not being able to hold a note or slur two simple notes. I have cried when hearing recordings of myself when I was "on". I have spent countless hours searching my soul about what I did wrong.

The awful truth is that this problem had been coming on for years and I just figured I wasn't doing enough of this or enough of that, proceeded to do those things, went into some kind of remission only to have it spring up again. The more it didn't work, the more you panic. The more you panic the worse you feel. The worse you feel the more desperate you get until finally, you have to face the cold, hard fact. It isn't going away.

The last time I played the tuba was for Pavarotti's farewell concert in Vegas. I used every trick in the book to make it through the gig and decided when I went home to stop. I wanted the mental agony to stop. I wanted the " it will better tomorrow" lie to stop. I stopped it and moved on.

I make music on a different level as a conductor, but I still have an ache in my heart that will never go away. There is music I love I will never be able to play, tunes I will never solo on again, comraderie that is gone forever. The worst part of it is that your mind remembers and is begging for everything to work, but our bodies have let us down. That is the true pain of FD.

I'm a virtual nobody so think of how someone feels who has been put on a pedestal and has to deal with this. All of you have got to stop your useless conjecture and go one with things that matter.

To all my fellow tuba palyers who are living with this, I empathize. Please know that my heart goes out to each and everyone of you.

May anyone reading this never, ever, have to go throught this.

Have Peace

Chuck Jackson

[Rick Denney]

Let me go back and review what else I said... Hmm...I never advocated rumor. I never advocated speculation. I never advocated discussing players whose condition wasn't public (That makes me want to ask, "WTF is you guys' definition of public?" and "WTF wasn't clear about that in the first place?") I don't seem to remember naming any players w/ FD, even though I'm 99% sure on a couple of them. I'm not 100%, so I can't comment truthfully on those players.

My point was that none of these cases have been publicly announced in a way that can be confirmed independently. That's MY definition of "public". Thus, everyone whose buddy heard it from his teacher will think it's public. Thus, the whole argument that we can even limit the discussion of individuals to those whose condition is public is vacuous, because there aren't any that meet my definition.

None of that, of course, prevents a discussion of the disease. It only prevents a discussion of the people who may have been victimized by it. All your stated objectives are met.

Rick "who doesn't push buttons just because they become visible" Denney

[windshieldbug]

[Rick Denney]

I am doing some research on Focal "Embouchure" Dystonia...

For me , this is a personal mission and I am eager to help your community and the larger world of patients with movement disorders.

Jon, meet Ross. Ross, this is Jon. It sounds as though you guys have a lot to talk about. Please keep us in the loop of what you discover about the condition and its treatment.

For example: Is it related to tremors, or does it just involve how one starts a note? What are the symptoms? What is the pathology? It seems to me can't develop therapies until we can identify what causes the symptoms, and we can't identify what causes the symptoms until we understand what the symptoms are.

Rick "noting a lot of confusion about what dystonia actually is and even more about its presentation" Denney

[Chuck Jackson]

Anybody who would like to know the start, progression, finality, and the theraputic steps I tried is free to contact me off list. One thing that was brought out is the debilitating mental consequences of FD. It took me 5 years to admit to my wife. It was the hardest thing I ever had to do.

Chuck
chuckjackson1@cox.net

[thedeep42]

Greetings, i've been coming out of hand problems for much of the last year. For awhile I thought I was done. Healing just takes a lot of time with these things... One of my friends has had hand problems for most of her life. I would like to know a bit more about face problems. Is there somewhere online that I can go to read up on FD? If there are transcripts or testimonials from players who have published or given workshops on the topic, I'd like to look at that. Also, i'll ask Ross. Any suggestions would be great. I think that the more aware people are of the condition itself, (especially young players like myself just hearing about it for the first time) the better it is.

[Raul I. Rodriguez]

Greetings, Is there somewhere online that I can go to read up on FD? If there are transcripts or testimonials from players who have published or given workshops on the topic, I'd like to look at that.

You 'll have a little bit of luck "googling" embouchure dystonia. A place to start is:

http://www.embouchuredystonia.com/

and

http://www.dystonia-foundation.org/defined/emb.asp

Since it has already been made public, a personal account can be found in an article for the ITEA Journal, Vol. 30, number 3. Entitled "Surviving Focal Dystonia."

take care,

Raúl I. Rodríguez

[brianf]

For years, many who suspected Focal Dystonia made a trek to Chicago and the Jacobs studio. He helped many through it but this is an area that he did not leave any information except what he told students. There are a few out there (such as Jan Kagarice) who speak openly about it. On the other hand, there is the majority who came to him who would prefer to keep this to themselves.

This is an area that Mr Jacobs was very sensitive about, instead of treating this like a student-teacher relationship, it was more like a doctor-patient relationship. Many came to hime because they held a position somewhere and any word about this could jeopordize their career. For this reason, Mr Jacobs would not even talk about them.

Take his advice, be very careful discussing this, while a case study may benefit the brass world, even a rumor of this may get someone fired.

[Chuck Jackson]

This will be my last post on this or any other subject. I wish I hadn't said a word, but I felt compelled. It has been very cathartic.

I appreciate Wade's understanding of this problem. Or should I say that I appreciate Wade's ability to approach this discussion objectively. You have always been a good guy, Wade, and your thoughts are very much appreciated.

I ask for no pity. That would denigrate me as a person. I don't care if you can comprehend or understand. Please, do not make any blanket assumptions about this topic or condition. Better yet, drop it and get on with your lives. This is a tremendously hard road for all of us who have been down it.

I hope that such a cure can be found and applied to those of you who are young enough to benefit from it. At 46, my days of worrying about playing for a living are over. No physical cure is going to supplant the mental damage that I have done to myself.

You will never be able to undertand what it is like to live through this, so don't even try. It will only debase myself and those who have gone through it. Honestly, some of this discussion smacks of people who rubberneck at car accidents, it is inhumane. I have had no problem hanging it out there because I am like you, I played and loved it, never was famous, but was damn good at it. It is all over, sobeit. Please try to stop understanding and try a little empathy for ANYONE who has lost the ability to do something because their body went south.

I say Good Bye. This is the last vestige of my performing life that is now behind me. Try to remember it is only the tuba for goodness sake and try not to take yourselves too seriously. I have enjoyed the company of the men and women of the brass for a good while, I will miss your company and your smiles, but I am moving on. Take Care and God Bless, and for all of you, try a little compassion. It's easy to be a hard *** behind a computer screen.

Chuck Jackson

[poomshanka]

I nominate this as the greatest animated GIF of all time. Would anyone like to second the motion?

I especially like the yo-yo eyeball action...

...D

[TubaRay]

I nominate this as the greatest animated GIF of all time. Would anyone like to second the motion?

I especially like the yo-yo eyeball action...
...D

I'm still trying to figure out what this has to do with the thread topic

[windshieldbug]

I'm still trying to figure out what this has to do with the thread topic

Welcome to TubeNet...

[poomshanka]

I nominate this as the greatest animated GIF of all time. Would anyone like to second the motion?

I especially like the yo-yo eyeball action...
...D

I'm still trying to figure out what this has to do with the thread topic

Oh, things seem to have gotten a little heated up, even to the point that one respected board member has decided to leave us. Just trying to lighten things up a bit, maybe interject a chuckle or two, that's all. It wasn't until this thread that I actually noticed the GIF, and it made me laugh.

...D

[windshieldbug]

<img src="http://www.barbecueamerica.com/images/Pork%20ribs.jpg" width="300">

[TubaRay]

I'm still trying to figure out what this has to do with the thread topic

Welcome to TubeNet...

That does pretty well sum it up, doesn't it?

[RyanMcGeorge]

I have been battling with Focal Dystonia for almost 2 years now and what can I say? It's a bitch. I have gotten a lot of tremendous help from some great people (Jan Kagarice being the main one) and things are getting better, but it is a long tedious up-hill battle. A year and half after my diagnosis, I am able to do my job again and I am greatful for that, but I still have a long way to go before I will be completely recovered and satisfied.

As far as it being a sensative issue, it certainly is, but in my experience I wish people would talk to me more about it. When somebody endures a signifacant loss no matter what it is, it is natural for everyone to try to avoid the issue. This is absolutely the WORST thing to do. Avoiding it does nothing for the person except make them feel alone or that nobody cares. Whenever somebody asks me how my playing is coming along, it feels good to know that people do care, and that they miss playing with me and that they support me. I have many colleagues that I see and work with all the time who have never asked me once how it's going and that's fine I suppose. But I think I can speak for the majority of people suffering from this disorder when I say it feels good to know that people are concerned and supportive.

Focal Dystonia is very difficult in many ways, but it does not have to be the end. There are answers out there, but tenacity is the key.

Jon (the original poster), If you would like to talk about any aspect of FD, I would be glad to do it.

respectfully,
Ryan McGeorge

[MaryAnn]

I announced in this forum and another one last spring that I had developed focal (embouchure) dystonia.

I was utterly amazed at the responses that came back with 1) denigrating the problem as one that I just needed to practice properly to overcome (i.e., as if it were a "muscle problem",) 2) offering me help for a fee, even from one well-known professional player, via email of all things, and then it was just another manifestation of 1). Extremely rare was any understanding whatsover of what embouchure dsytonia is.

Of the people I have run into who have FD, and those whose descriptions I have read, I have personally, so far, categorzied it into three manifestation types: flaccid/twitching, tension, and uncontrolled motion. A person can have any combination of these.

The flaccid/twitching type manifests as muscles that refuse to tense as you wish, and/or twitch instead. The tension type manifests as muscles that decide to be tense all the time and won't let go, and this can lead to pain not unlike muscle cramp. The uncontrolled motion type manifests as muscles that move in large and unexpected ways when you are trying to tense them to play; sometimes the muscles affected are not even the embouchure muscles but "nearby" muscles.

Focal Dystonia is a "brain thing," even though it appears to be a "muscle thing." Compare it, if you will, to epilepsy: when you see someone in a grand mal seizure, it certainly appears to be a muscular malfunction, but you don't walk up to him and say "why don't you just quit doing that?" because the vast majority of us have been educated as to the fact that a seizure is the uncontrollable result of a brain malfunction. And we don't suggest that the epileptic change his practice routine in order to avoid the seizures.

The "Focal" part of embouchure dystonia has to do with the fact that it occurs in a task-specific format, that is, when trying to perform the task of playing the instrument. One person, whom I know personally, who has the motion type of FD, has no problem until he puts his mouthpiece to his lips, and then his head starts to wag back and forth uncontrollably, giving him a large unintended vibrato in his sound. He is totally unable to "just stop doing that" and it doesn't have anything to do with his practice habits, even though it only occurs when he tries to play. When he "focuses" mentally on playing...the dystonia manifests. It doesn't manifest when he, for example, drinks a coke or drives his car. It is focal in nature, having to do with the fact that he is intending/focusing on playing his instrument.

There are people who manage to overcome it completely, although to date they are a small percent; there are some who can play at a level lower than their previous level; and there are those who had to completely give it up. Some who gave it up did so because the FD caused such anxiety about when / where it would manifest that playing became more stressful than joyful for them.

One friend of mine who got FD nine years ago has stubbornly refused to give up, and she is actually making some progress. However it was not her means of support; at the time she gave up her orchestra position and her woodwind quintet, which she had been in for decades. She did not know what had happened to her, and it was extremely stressful for her.

The emotional impact of FD is about at the same level as your attachment to and love of your playing was before the FD hit. Sometimes you don't even know how much you loved what you were doing until it became impossible.

Anyone who has FD/ED who would like to correspond about progress I have made, is welcome to send me their email address via PM. I have the deepest sympathy for those for whom playing is not only a love but also a career.

Mary Ann

[eupher61]

Thanks, Mary Ann, for telling your story.

Fortunately, FD isn't part of my life. But, Essential Tremor is in my family, and I've had some minor manifestations of it on and off. Certainly, the ET is worse when I'm stressed overall, not just in the specific situation. For a while, I was able to combat and even stop the tremor with "Inner Game" techniques--one grad school recital was noteworthy for that, I was playing an unaccompanied piece, the tremor started in my right arm, and I specifically remember thinking "STOP THAT" and it went away. The difference could be heard in the recording even.

Anyone who says FD is just a matter of practicing right has no clue. It can be devestating. My former teacher seems to be overcoming it, has been playing in public again after some 6 years. That's great news. So, in some cases, it can be overcome. Does it go away, is it cured? Doubtful.