Focal "embouchure" dystonia

[djwesp]

removed

[TubaJulio]

hey jon ummmmmmm.......who did you do your undergrad with???

[ubertuba]

Toby Hanks
Former freelancer in New York and tubist with New York City Ballet Orchestra and New York Brass Quintet.

He has taught at Manhattan School of Music since 1974, and now he teaches at five other places that I can't remember (one is University of MD College Park, where he might be my professor next year!)

He had to give of playing quite a while ago I as understand it.

What a sad, sad thing...

[ubertuba]

Hey Toby is Julio's teacher! (I guess?)

[TubaJulio]

Yes Toby is my teacher. And he also taught Jon when Jon went to Peabody.

[Chuck(G)]

Please, for the sake of simple decency, request that folks contact you off-line. Give the good people an opportunity to talk to you openly with some assurance of confidentiality.

No one needs a forum where a third party trumpets someone else's problems.

..unless you're into supermarket tabloids...

[tubapress]

I recommend you contact Jan Kagarice at University of North Texas. Jan has built a great reputation for working with players that have had Dystonia. Many that have worked with her have reported very good results, from what I understand. She may be able to give you some very helpful insight into this mysterious condition.

Good luck with the research! Perhaps you could publish your findings for the tuba community when you have compleed your research?

Thanks.

Gary

[windshieldbug]

...unless you're into supermarket tabloids...

Wow! Britney Spears has Focal Dystonia!?

[djwesp]

Please, for the sake of simple decency, request that folks contact you off-line. Give the good people an opportunity to talk to you openly with some assurance of confidentiality.

No one needs a forum where a third party trumpets someone else's problems.

..unless you're into supermarket tabloids...

I see your point, therefore I removed my post.


My only concern is that this subject is becoming too taboo. I think discussing it openly would help us find a solution to a problem that is starting to become more seen (or at least known about).


Writing the name was bad taste in my part (most likely, even if he openly discusses it), however a very prominent player speaking out and starting a crusade to address this issue is exactly what we need in my mind.


(side note, the person I mentioned has openly acknowledged and talked about his Dystonia for years)

[windshieldbug]

a very prominent player speaking out and starting a crusade to address this issue is exactly what we need in my mind.

Bear in mind, however, that it may be very difficult for people to admit openly as long as it has some effect on their livelihood. Let them decide if it is time for them to speak.

[djwesp]

a very prominent player speaking out and starting a crusade to address this issue is exactly what we need in my mind.

Bear in mind, however, that it may be very difficult for people to admit openly as long as it has some effect on their livelihood. Let them decide if it is time for them to speak.

I think I wasn't very clear in the fact that the professor I mentioned has openly discussed his dystonia for years.


However, that doesn't change the fact that it probably needed to be removed.

[Chuck(G)]

(side note, the person I mentioned has openly acknowledged and talked about his Dystonia for years)

That may well be-and good for him. For many others, this is a very sensitive topic and we should respect that, I think.

[Rick Denney]

I think I wasn't very clear in the fact that the professor I mentioned has openly discussed his dystonia for years.

Yes, he has. I attended his master class at the Army conference several years ago in which he discussed it quite fully.

With any disease, however, people become sensitive either as sufferers or as their friends. The way to address this if you wish to write a paper is to talk with the professor you mentioned, and have him connect you with others, who will connect you with still others, and so on. If you ensure their anonymity by referring to them cryptically in your paper, then your paper can perhaps help shed more light on the disease.

For example, if as an engineer my livelihood was affected by, say, a stroke, then I might be very careful about how I presented that to people. The degree to which I'm affected may be overstated if my situation was mentioned publicly, and that might prevent me from continuing to do the things that I CAN do. As a professional, my fitness for any given job would be judged by myself and my clients/employer, not by public discussion, and certainly not by the Tubenet Freak Jury.

That's why medical research is so careful about anonymity protocols and so forth. You might benefit from reading up in the medical literature how they usually handle the discovery of willing subjects for study. There might be techniques that would help you make good contacts while still maintaining confidentiality and good ethics.

Rick "who has not had a stroke--no, really" Denney

[djwesp]

I think I wasn't very clear in the fact that the professor I mentioned has openly discussed his dystonia for years.

Yes, he has. I attended his master class at the Army conference several years ago in which he discussed it quite fully.

With any disease, however, people become sensitive either as sufferers or as their friends. The way to address this if you wish to write a paper is to talk with the professor you mentioned, and have him connect you with others, who will connect you with still others, and so on. If you ensure their anonymity by referring to them cryptically in your paper, then your paper can perhaps help shed more light on the disease.

For example, if as an engineer my livelihood was affected by, say, a stroke, then I might be very careful about how I presented that to people. The degree to which I'm affected may be overstated if my situation was mentioned publicly, and that might prevent me from continuing to do the things that I CAN do. As a professional, my fitness for any given job would be judged by myself and my clients/employer, not by public discussion, and certainly not by the Tubenet Freak Jury.

That's why medical research is so careful about anonymity protocols and so forth. You might benefit from reading up in the medical literature how they usually handle the discovery of willing subjects for study. There might be techniques that would help you make good contacts while still maintaining confidentiality and good ethics.

Rick "who has not had a stroke--no, really" Denney

It is hard to tell since you quoted me if you are addressing me or the person actually writing the paper.

You do realize I am agreeing with you? Hence why I removed the post? I removed it, commented that it was probably in bad taste, and even clarified that I was not releasing information that person did not want shared.

I agree with what you are saying. The shadow being cast on this is almost that of carpal tunnel and the piano community.

(wondering how much more a person can say they are wrong and clarify)

[Rick Denney]

It is hard to tell since you quoted me if you are addressing me or the person actually writing the paper.

Sorry, I didn't check back and thought you were the same person. I was trying to point the person writing the paper in a positive direction to deal with this issue, and still be able to make progress. But it was you who mentioned a concern about the subject becoming too taboo, and most of my response was aimed at that statement.

And I opened the window and started typing quite a while ago and the telephone interrupted. Chuck had responded while I was dealing with other things. I did not mean to pile on. It doesn't seem to me that multiple responses to an issue indicate that multiple mea culpas are required. Tubenet is more serial than email, but it's still not always serial.

Rick "writing generally" Denney

[windshieldbug]

Tubenet is more serial than email, but it's still not always serial

Oh man, I was hoping for cereal multiprocessing!

[Chuck(G)]

Oh man, I was hoping for cereal multiprocessing!

Mixing your Wheaties with Cocoa Puffs?

[Chuck(G)]

BEGIN RANT:
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END OF RANT

Doc

Beg to disagree, Doc. Sorry.

This kind of discussion can quickly degenerate into a "I heard that (fill in player's ) is battling it". Well, what if he isn't? What if he doesn't read the BBS and is trying to figure out where all the rumors came from?

Are we really such a bunch of gossipy biddies that we need to air other people's problems? Please, I've got enough of my own to deal with.

Inviting private messages from those afflicted is a more sensitive way instead of soliciting trash like "I heard that John has a drug problem." Once it's out, it acquires a life of its own, no matter how many times one volunteers to pee into a cup.

Leave that to the Rupert Murdoch types. I'd like to think that we're better than that.

[eupher61]

Suffice to say, in this public forum, FD has affected numerous tuba players, who play in nearly all aspects of tuba playing--quintet, studio, major orchestra, smaller orchestra, university level teachers, and casual players. "Style" of player ranges from the power orchestra player to the technical solo wizard to phenomenal all-round player.

There hasn't been a definite common factor identified, that I've seen or heard about. One theory was lack of good warm-up on a consistent basis. While that certainly may apply to a couple of the players I know of, it's not universal.

It does affect other instruments' players as well, and while the most prominent pianist commonly identified is Leon Fleisher, I've also seen his condition referred to as repetitive stress syndrome, tendonitis, or carpal tunnel syndrome. Whatever.

There also is no real cure evident for FD. Some have tried Botox. Some have kept playing through the symptoms, some have quit totally. Some have recovered their previous ability, some haven't.

How's that for a non-answer??

[djwesp]

BEGIN RANT:

What a bunch of over-sensitive, pansy-assed creampuffs. It's not lot we're talking about AIDS or what whores they had to screw to get it. Focal disfonia IS NOT A MORAL/ETHICAL/POLITICAL/RELIGIOUS OR OTHERWISE SENSITIVE ISSUE. It is a legitimate discussion in our small community. If someone doesn't want to talk about their problem, that's ok. No one is asking that of them. The idea that they need privacy because somehow this problem is an unbelievably embarassing condition indicates that the player has done something wrong, agregious. Horse hockey.

Sure, we should respect someone's privacy, but we don't need to be accused of having some kind of tabloid discussion if we want to learn more about it. As tuba players, we have a lot invested in our favorite players. We are a small community, after all. When one of our favorite all-stars has a problem, it naturally concerns us, hence these threads. What we talk about publicly that is public information, or has become public information (not rumor or speculation), is free game. Tight lips and closed minds don't do much here to bring about understanding or solutions. I don't see rumor, speculation, or slander in what's happening here. Sean can still lock the thread, delete it, ban us, etc. - it's his site - but that won't help.

There is nothing taboo about FD, so you lightweights might think about getting a grip. The same taboo-mentality keeps victims from talking about getting raped, even though they are blameless and did nothing wrong, or did nothing to bring it about. It keeps victims from coming forward, people from being helped, and rapists from going to prison, consequently allowing rapists to acquire new victims. That's a taboo that any moron knows shouldn't exist, yet people allow it to continue. Don't let that same ridiculous mentality keep us from a legitimate discussion. We don't have to talk **** about someone (no one has), but there is nothing that should keep us from discussing FD, or mentioning players who have been affected by this condition. MENTIONING AFFECTED PLAYERS DOES NOT CROSS ANY MORAL/ETHICAL LINE, and the mere mention of someone's name does not violate their privacy WHATSOEVER! They are sensitive because all this talk could hurt their career? BS. Their careers are already hurt because of the condition, not the discussion about it. PFFT! If you're not sure about a player/don't have facts/no public info, you have no ground on which to stand, and the TNFJ will take care of you. Otherwise, there ought to be a free exchange.

I guess we had better not ever mention any other people who might have some other condition or disease, or had something bad in life happen to them, got angry, stubbed their toe, looked at someone funny, ate with a salad fork instead of a dinner fork, dialed a wrong number, or thought tomatoes were vegetables, since that discussion might, in and of itself, harm them in some unidentifiable, indescribable way.

END OF RANT

Doc

Took the words right out of my mouth.


However, I've sat enough fires recently and definitely couldn't express myself as well as you did.

(i'm more worried about comments like, "i think so&so has it", as compared to people that openly discuss it)