Posted by: aronsklar ®
05/02/2003, 01:09:29
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HI Jim, As far as I know, focal dystonia in the embouchure can effect you in a number of different ways. It can effect only certain registers of the horn; or your jaw, or your lips, etc..... It's certainly very weird. I have what Dr. Lew at USC ( who diagnosed me as having 'classic symptoms' of embouchure dystonia. These being that my mouth inadvertantly tries to close, ( my jaw goes up,) I lose corner strength, and cannot 'roll in' my chops. Because of these things, I also built other habits to try to recover playing. The middle of my lips are very tight, instead of being loose to vibrate. ALl in all, it's been about a year since I developed dystonia. I can offer some hope though. In the last six months or so, I've experienced a very large and significant resurgence in my playing. Sure, I have to play with about as unusual set of chops you've ever seen. It doesn't matter though. As Arnold Jacobs used to say, " I don't care if a player plays all wrong, long as he sounds better then the next guy..." The one thing that piques me is that I had to switch to bass trombone exclusively for the moment. I couldn't play much above the staff at all for a long time. Though now even this is starting to sound better.
I'm not suggesting you go out and play more, trying to find ways of getting by an all that... When this first happened to me, I practiced even more, and just exacerbated the problem. Within three weeks I lost all my ability to play. The important thing is that no matter what your circumstances, you are open to the possibility of things getting better. And if you're lucky, ( as I have been) you might find a way to play again... I wish you that luck.... and the patience to persevere....
Aron Sklar
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Posted by: Clive ®
05/20/2003, 13:43:50
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Hi Jim.this is my first post on the bulletin board. I have also been diagnosed with embouchure dystonia. Well actually, it is strictly dystonia of the jaw since my tongue and lips aren't particularly affected. I am now 26 years old and played the cornet/trumpet since the age of 7. About 18 months ago I noticed I was finding playing a little harder than usual. AFter quite a while it got even worse to the point where I was a bit embarrassed to play. The problem for me is that my jaw pulls up so that the teeth are closed. At the time, I though I was just going through one of those bad phases - this was an easy diagnosis since I was finishing a PhD off at the time!! I then gave up playing for the time being to have a break (last Xmas), and things got even worse! It began to affect my whistling and then speech. Now, a few months on, I find talking quite difficult since my teeth want to close together. If I try and keep them open, the jaw often spasms upwards - not good for my teeth! I've recently starting using Artane (Benzhexol) with some improvement (about 10-15 per cent I would say). Next week I will be on 4 mg per day so there is still room for upping the dosage. The next step is probably is botox-injections. i've not played a single note since last December and I'm missing it terribly, especially since many of my friends are from brass bands. I hope one day it will fix itself but it is unlikely I'll be able to play again. My main priority at the moment is to be able to speak more clearly and easily. If the situation does improve I will probably try playing a larger brass instrument which will since this is less likely to make the dystonia return. Well that's my story in a nutshell. Good luck with your playing. cheers
Clive Dickinson
Manchester, U.K.
clive.dickinson7@ntlworld.com
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Posted by: Margot C. ® MC, MC
05/21/2003, 00:03:04
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Dear Clive
I'm very sorry to hear your story of giving up playing. It is sad, and a sadness I share, having had to give up bassoon playing in January this year myself.
I have been thinking recently about trying botox in my jaw, so would be interested to hear of your experiences if you ever have it done. My main problem has been in the neck but I recently have decided that the jaw is more involved than I thought. My bottom jaw pulls to the right.
Good luck with your treatments,
Margot
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Posted by: aronsklar ®
05/21/2003, 15:53:48
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Hi Clive, I'm deeply sympathetic to you situation. Most of us on this board are in similar situations, and know the frustrations. In your message you stated you thought that playing a larger brass instrument would improve your playing,and make the dystonia less likely to effect your playing. I find that highly unlikely. I have focal emmbouchure dystonia, and when I try to make what used to be my older perfectly functioning embouchure, I can't do it anymore. Some muscles just don't do what I tell them to do. It happens anytime I try to make an embouchure, even away from the horn. I just wanted to forwarn you the possibility that it probably won't make a difference what wind instrument you play, and that using those muscles in any sort of highly developed motor skill will probably trigger reactions, sooner or later.
Now I don't think that means that your playing days are over. There is no one perfect way to play brass instruments. Sure, there are standard ways that are the ways we are usually taught. I now play with a highly un-orthodox embouchure. No one would ever teach me to play the way I do, but it works for me now, and allows me to play trombone at fairly good level. I have the same problems as you do, as pertaining to the jaw. I have learned to play with a new emboucure. Though it is hard and has it's defficiencies, I think it's possible to still play at a fairly decent level with this damn thing.
I'm still discovering things everyday, and I hope I can get even further down the musical road. I hope you can too. Good luck, and don't give up until you have exhausted all the options you can think of.... Aron Sklar
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Posted by: Clive ®
05/23/2003, 14:13:25
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Hi all...thanks for the replies. I take everything on board what you say. It is strange how as I write this e-mail my jaw is actually the "best" it has felt for several months. I believe this is the Benzhexol which I have now increased to 4mg per day. Although it may be due to the fact that I got done for speedning today which really miffed me off - so perhaps the fact I've not been concentrating on trying to speak clearly it seems to have imrpoved a litle! I reckon I have got about 40 percent movement back today- I can almost speak properly now! I'm not getting my hopes since it might be realaly bad tomorrow or later tonight!! Up to now, I've only had 10-15 percent improvement. My plan of action is to get my speech back and so that I'm not thinking about my jaw. If and when (!) I can feel "normal" and speak clearly I will give it several months before going back to a brass instrument. And then I will probably start on a bigger instrument. However, I will only give it a go if I feel 100 percent - this might never happen. As you said, I really need to use different motor patterms to be able to play again. Probably starting with 5 mins a day or so (my neurologist who is also a specialist in dystonia and particular, musicians with dystonia) even recommended this. In my case, it is just my jaw and note strictly my embouchure (i.e. tongue, lips, cheek muscles). This makes it more likely that I might be able to play again. I'll keep you posted. I've not found many "success" stories w.r.t. dystonia. However, I'm determined to get this crappy problem out of my head. Have you heard of any "success" stories? cheers
Clive
clive.dickinson7@ntlworld.com
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Posted by: jimboswife ®
09/08/2003, 14:16:11
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Please if anyone can help us with more information..anything that is an update medically, would be awesome. Thanks to all that have written!Peace and Love to you and your families. Good luck with your musical talents and God speed. Lisa
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