Posted by: Margot C. ® MC, MC
06/06/2003, 06:11:33
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Hi,
Just letting you know, I'm another musician from Australia on this bulletin board. I was the principal bassoon with the Adelaide Symphony Orchestra for the last ten years, but left this year because of dystonia in my neck and jaw.
Hope you get some success with treatments,
Best of luck
Margot
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Posted by: Di Tod ®
06/08/2003, 04:59:06
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Dear Margot,
Thanks so much for your reply. I'm so sorry you can't play any more. The best thing for me at the moment is to know I'm not alone.
Actually,from reading the BB, I tried to contact you through a friend, Peter Whish-Wilson, who gave me your phone number. I hope you don't mind. I wanted to ask you what medical people you know of in Adelaide, but also wondered about your neck,as the last few weeks before my lip went, every time I played the bass clarinet (which was a lot) I got a very stiff neck, and as a result, pretty bad headaches. I've been wondering if there was a connection between my lip and my neck.
I see another neurologist and a speech pathologist next week, and have written to a couple more, and may find out more then. It all seems to take forever.
It feels rather bizarre as I had no idea this could happen - I guess no-one does.
Thanks again for your reply,
best regards,
Di
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Posted by: Margot C. ® MC
06/08/2003, 22:19:31
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Hi Di,
It's good to get your reply.
I'll email you with my phone number, as I'd be happy to talk.
I have been researching this condition for about three years now, so I can offer you whatever I've learnt.In Adelaide the people I've found help with are my neurologist, Dr Chris Kneebone, my neurophysiotherapist Libby Bamford, my Bowen therapist, Robert Andersson and my naturopath, Ursula Notaris. Your feeling that this is a bizarre thing to happen, I can relate to that so much. I never knew anything about the condition before. To suddenly lose control of your muscles is the most freaky experience.
It has helped to read about how the brain works and what's going wrong, but even then it is all very hard to integrate with what I experience. I have also looked into treating practitioners interstate and overseas.
In Melbourne I have been in touch with John Coleman, who is a naturopath who recovered completely from Parkinson's Disease. He has been interesting and helpful, and put me onto Bowen therapy which helped me a lot.
I haven't come up with anything much else in Australia, except for the Hopewood Clinic in NSW (a natural health clinic) who said they had had some success with my condition before. I like trying natural health methods as well as the conventional ones. I've found help from both. Overseas there is a physiotherapist called Jean-Pierre Bleton who has specialised in treating dystonia. He actually gave a workshop in Sydney last year but I found out about it too late. I have his book and a video.
In Germany a technique called Dyspokinesis is used for treating musicians' injuries, including dystonia (embouchure and other types).
That's probably enough for now. I've tried to follow up only those methods with strong anecdotal evidence and which make logical sense to me.
I haven't had the money to try any of the practitioners interstate or overseas yet, but I keep them in mind for the future.
I'd be interested to hear if you have success with a practitioner in Melbourne.
Thought I'd write all this in this post in case it helps others too, but I will try to send you my phone number as well.
Best wishes
Margot
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Posted by: Di Tod ®
06/10/2003, 06:34:02
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Hi Margot,
It's great to get such a datailed reply - thanks a lot!
What you wrote was really interesting - I'd love to follow up all your medical people.
Appart from my neurologist, Dr. E. B. Tomlinson, who worked for some years in Boston and treated musicians from the Boston Symph. - although a while ago, I gather - I have seen a speech pathologist today, who really couldn't help me, but is referring me to a voice pathologist who has worked with singers. I also have an appointment to see another neurologist next week, a Dr. Jack Wodak. I have also written a fairly detailed report of what has happened to me and sent it to my father, who is a retire radiologist in Brisbane, in the hope that he may be able to track someone down up there for me.
Also, from the DMRF website of medical practitioners who specialize in dystonias, I found two Australian neurologists, one in Perth (a bit far to go!) and one in Newcastle. I rang his practice a couple of days ago and was told he was booked out until Nov. (not with embouchure dystonias, I presume!). I'd also faxed my report through to him, and today they rang back to say he could see me in a couple of weeks. Also today, I received an e-mail from Dr. Steven Frucht of the DMRF, and a package of information from them as well, which is all fantastic! So finally I am beginning to feel as if I am getting somewhere.
I am really interested in your alternative, natural treatments and would love to explore that too, as well as have a chat to you.
Also, my mother has Parkinson's and I would love to find out more about John Coleman.
My E-mail address is:bunter@alphalink.com.au
look forward to talking to you,
many thanks, and all the best,
Di
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