Posted by: Linda Spain ®
05/21/2004, 16:43:48
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Adding to Lynne's comments, OMD also may affect the tongue, thereby further disturbing speech (and eating).
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Posted by: Lynne Martinez ®
05/21/2004, 17:27:13
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Correct, Linda. Dystonia of the tongue is called "lingual dystonia." It can often be part of OMD or separate, or part of the Meige Syndrome (whole face). I'm not sure what composite Jenny Craig has, but will watch ET tonight to see how she describes her personal case. The fact that the ET link (which I picked up on a tip from a friend) indicates Jenny will discuss her dystonia case is intriguing. I didn't see her on Larry King, but some of the folks who watched it said she only mentioned dystonia at the beginning. Hope Jenny focuses more on dystonia tonight, although the segment could be very brief, being "ET." Also, I'm always intrigued by the difference between "speech" and "voice" so, if she talks about her difficulties (as a dystonia patient) in speaking, it could be interesting. Thanks, Lynne
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Posted by: June Floyd ®
05/22/2004, 07:12:49
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I hope you don't mind, Lynne, but I found this interesting and posted in on the Blepharospasm bb for the folk `over there' as some of them have the swallowing/eating/breathing issues. Thanks.June in Toronto, Canada, BEB/Meige 9 years.
Modified by June Floyd at Sat, May 22, 2004, 07:13:51
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Posted by: Samietooo ®
05/22/2004, 07:27:50
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Hi June. Just wanted to say that was a good idea!
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Posted by: Lynne Martinez ®
05/22/2004, 13:37:13
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Hi June,Glad to share. That's why I posted the information here, even though Jenny Craig doesn't have Spasmodic Dysphonia. There are some SD patients who have some of those other things also, and the fact that some of the other "cranial" dystonias manifest speech difficulties seemed significant to those of us with vocal disorders. Also, your point is well made but you don't need my permission (and I'd think if someone else posted this info, it would be OK also) to move something to the Blepharospasm BB. I hope some people over there were able to see it also. Here's a good one (re sharing posts on BB's): Last year, when there was a formal announcement on this BB about Robert F. Kennedy Jr joining the NSDA Honorary Board, I did a Post Reply to that announcement and several months later (in doing some research on his upcoming appearance on Martha Stewart's show), I did a Google search on "Martha Stewart" and "Robert F. Kennedy, Jr." and -surprise- found my full SD-BB post from months before in the middle of a Bulletin Board about the Kennedy Family! So, things float around the web, for sure. Hopefully someone might post here about how this short appearance on ET compared to Jenny Craig's appearance on Larry King recently. I'm curious. I think someone said last time that dystonia was only briefly mentioned at the beginning of the LK piece. I thought the short segment on ET last night was very good. It was completely focused on the accident she says triggered her OMD (or whatever her diagnosed cranial dystonia is) and, on her dystonia case. In watching her speak, you can tell that she still has an impact. Her vocal quality is OK but you could tell that she was struggling with some speech issues (almost sounded like a stroke patient who is "almost recovered?") - some of the muscles in her face (cheek muscles to the sides of her mouth) are still dystonic. Also, I think we've learned by now that the media doesn't understand dystonia, and they enjoy the "quick fix" stories so it's difficult to explain it to them. Thus, they didn't say what type of dystonia Jenny had. They kept calling it "Focal Dystonia," even putting the words "Focal Dystonia" on the screen. Just having the word "dystonia" in the media seems helpful though. Since Jenny Craig is an icon, that short piece has to have accomplished some awareness. --Lynne (AD-SD; Northern California)
Modified by Lynne Martinez at Sat, May 22, 2004, 13:53:20
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Posted by: Samietooo ®
05/22/2004, 07:25:58
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Hi Lynne. Do you remember me? lolSorry I missed Jenny Craig. I had no idea she has dystonia :(
I can't believe how many forms of dystonia there is! Does anyone know HOW MANY??? Lynne? Dang!!
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Posted by: Renee ®
05/22/2004, 14:32:09
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I watched Jenny Craig on ET, and I thought that the piece on Larry King Live was much better. I agree with Lynne that the media likes the "quick answer" and they had sprayed the word "Focal Dystonia" on the screen. I thought that they made it too simplistic and that they rushed the segment too much. Still--it is good to get SOME media coverage, so between this and Leon Fleishcher maybe we can really get some awareness going. Neither one of these people has SD, but ANY dystonia awareness helps our own cause. Hopefully, Jenny Craig will be on other shows in the future, and that they will give her more time on the air...
Renee ADSD/ Austin, TEXAS
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