| Slad Surgery and Myobloc? |  | ||
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Posted by: Marguerite Ryan ® 10/31/2002, 21:59:57 Author Profile Mail author |
Hi' I just recently got a PC so I am very new to using the internet.I have not really kept up with the latest treatments for SD . I do get Botox but my voice is ok but not as good as others that get the treatment. I also have a tremor. I really don't have a good self monitoring of my voice. Sometimes when I leave a message on phone mail at work I am surprised at how bad it sounds when I play it back.The only information I get about SD is from the dystonia book that is mailed out . The support group that met in Chicago about six people were meeting regularly was never very helpful to me.I had SD for such a long time that the speakers they had just upset me except for Dr.Bastian. The leaders of that group think botox is not the best treatment. I always got the impression that they think speech therapy is the best.Some of them (all male) were chosen to go to California a few years ago to work with that speech therapist there expenses paid for.That support group does not meet very often any more and they don't send out mailings. I apoligize for my question but what is Slad surgery and Myobloc? |
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| Re: Slad Surgery and Myobloc? (support group issues) | | ||
| Re: Slad Surgery and Myobloc? -- Marguerite Ryan | Top of Thread | Archive | |
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Posted by: Lynne Martinez ® 11/01/2002, 16:54:42 Author Profile Mail author |
Dear Marguerite, Wow. I responded to another post from you (the disability thread - dealing with your employer) and would like to communicate with you off this Bulletin Board in order to offer additional assistance re these important support group issues you mention. Thank you for sharing this story. I attended the SD Symposium in Chicago almost 5 years ago and first met Dr. Bastian there. I also met some of the patients you refer to...the people who were sent to work with Dr. Cooper. I know some of them in person and Dr. Bastian discussed the project at the Michigan Symposium in March, 2001. You never need to apologize for asking a question on this Bulletin Board. As I mentioned on that other thread, you are fortunate to have a wonderful physician in your corner. For alot of information on those two topics (SLAD and Myobloc), you can do a *search* at the top of the BB and find alot of information. These subjects have been discussed for four years on this BB so there is alot of excellent info. We have a wonderful BB-community with folks who can fill you in.
--Lynne (AD/SD; Northern California)
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