Musicians with Dystonia Bulletin Board

Re: Resources (possible BBS upgrades?)
Re: Re: Resources (possible BBS upgrades?) -- Brian Hays Post Reply Top of thread Forum
Posted by: GuitarTron ®
06/22/2010, 15:53:14
Edit
I am really willing to do lot of things in the site I am trying to put together, I don't want to actually call it "my site", right now the only thing it has is my video but I would like it to be a big resource full of HOPE for musician suffering this condition so I don't really want it to be my site but the site of all of us. As I said in the post regarding the project, I am open to absolutely any ideas and searching for people willing to collaborate, I am a collaborator too!! I don't want to be any prominent figure of the project just one more if you know what I mean!! let's do it, help me out!!

Regarding Dystonia Medical Research Foundation I wrote them, and they don't seem to be very willing to actually help in changing the way musician's focal dystonia is being currently seen.
Shouldn't they be actually the ones to move their asses to make research each time there is a successfull recovery case?

Here I'll post the texts of what I've wrote to them and the answer I've got back from Glen Estrin, President of "Musician's with Dystonia" part of the Dystonia Medical Research Foundation.

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MY EMAIL MESSAGE
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Hello, I am a right handed guitar player, I was diagnosed with musician's focal dystonia by 2 respected neurologist here in Argentina, one of them being one of the highest authorities in abnormal movements of this country.

After 9 years of suffering this condition in my left hand I fully recovered.

I really don't understand how come the medical community is not aware that musician's focal dystonia is completely curable, in year 2000 already, doctors Raoul Tubiana and Peter C. Amadio published a book entitled "Medical Problems of the Instrumentalist Musician" (ISBN10 1853176125) where they demonstrate that recovering from this musician's focal dystonia is completely possible.

I recovered by following the method of Prof. Joaquín Fabra who's a Spanish trombonist that got him self out of embouchure's dystonia 25 years ago and that helped a lot of people to recover from this condition since 20 years ago.

I wonder if your foundation is not aware of this, since there's absolutely no reference in your site regarding the possibilities of successful treatment that exist for musician's focal dystonia.

Best Regards,
Sebastián Gauna

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THEIR ANSWER
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Dear Mr. Gauna,

Thank you very much for contacting the Foundation. As you know, musician dystonia is a devastating disorder. Many specialists around the world are working on possible therapies. As you mention Professor Tubiana and Dr. Amadio, they are true experts and both are very frustrated and have told me personally about their attempts to help musicians overcome dystonia. Their book is very interesting, and their desire is to help dystonic patients, but neither one has been able to publish truly successful results.

This is what the world needs!!! Reports of successful therapies and how they were accomplished. I would sincerely encourage you, along with Prof. Fabra, to publish your successful story and any others you may know of. Most importantly, the methods used as these were not mentioned by you in your e-mail or on your YouTube videos. It is incredibly important to let us know how you recovered as this is the only way we can replicate the therapy to prove success. A publication is essential to recognition for the Foundation and all other dystonia sufferers.

I am very excited by your recovery, and wish you much, much success. You have obviously spent much time on your video and all your thought regarding your dystonia. Please use some more time to publish with Prof. Fabra a story of how you recovered along with the video proof you have already shown. Any other success cases he has would be very helpful, too. This would be the best way to help others.

The Foundation would be thrilled to share successful therapy stories, but we are not aware of any that have been published and proven at this time. That is why there is no reference to them on the website. I sincerely hope you can change this.

Thank you,
Glen

Glen Estrin
President, Musicians With Dystonia
Dystonia Medical Research Foundation



Modified by GuitarTron at Tue, Jun 22, 2010, 15:54:34

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