Dystonia on TV/Did Anybody Watch?


Posted by June in Toronto (June Floyd,June in Toronto), Aug 18,2001,09:56   Archive
I didn't get to watch the 20/20 show last night - fell asleep earlier than 10pm when it started. Did anybody watch it and was there a segment on dystonia? I'd be interested in hearing about it. Thanks.

June in Toronto




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Re: I Answered My Own Question!

Re : Dystonia on TV/Did Anybody Watch? --- June in Toronto
Posted by June in Toronto (June Floyd,June in Toronto), Aug 18,2001,10:12 Top of Thread Archive
I answered my own question by going over to the Dystonia bb and reading their posts on the subject. Apparently it was a good show - about DBS surgery - you can check out the transcripts by going to cbcnews.com and clicking on 20/20.

June in Toronto

--modified by June in Toronto at Sat, Aug 18, 2001, 10:34:12

--modified by June in Toronto at Sun, Aug 19, 2001, 12:33:18




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Re: I Answered By Own Question!

Re : Re: I Answered By Own Question! --- June in Toronto
Posted by grace anne , Aug 18,2001,10:47 Top of Thread Archive
By the time I remembered, that segment of 20/20 had already started, but I didn't miss much of it. It was fantastic and so uplifting. I cried. I had to listen to most of it as it is very difficult to watch TV. I wondered if somehow they couldn't find the part of the brain for each of the dystonias and do that same surgery. Wouldn't it be wonderful! They mentioned he had writers cramps and ever since I first heard that that was one of the dystonias, I wondered how it ever fits in as a dystonia. After seeing this poor boy, I was flabergasted at the impact just this one dystonia has on someone.

graceanne in port orchard




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Re: Dystonia on TV/Did Anybody Watch?Yes I did.

Re : Dystonia on TV/Did Anybody Watch? --- June in Toronto
Posted by Delaine Inman , Aug 18,2001,10:18 Top of Thread Archive
Yes it was on 20/20 and it was very good. Dr. Tim Johnson did the narration and mentioned that ED had an unusual form of dystonia that affected the whole body and that probably 300,000(I think that was the number he used) had dystonias that affect one group of muscles or more. I wonder if this is the same surgery that Dee Linde had? I'll email her and ask. It helps her dystonia of body, but then she got BEB. Maybe they haven't tried to find the part of the brain to put the electrical stimulation to help BEB for those with the bilateral implants. I'd hate to think that was the answer for BEB instead of a cure, but most of us would gladly go through the procedure if it would work to keep our eyes open. It was amazing how well the surgerical implants was working for this young man. He suicidal and felt he couldn't live that way anymore. I can see why he felt that way, he was confined to bed and nothing was working for him. Thank God for the procedure that worked miracles for him. email me and I'll forward the website that someone sent me about the program. rustyfox@charter.net



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Re: Dystonia on TV/Did Anybody Watch?Yes I did.

Re : Re: Dystonia on TV/Did Anybody Watch?Yes I did. --- Delaine Inman
Posted by Christel-California , Aug 18,2001,12:40 Top of Thread Archive
I was able to watch 20/20 as well, as we get the show at 8 pm. Watching the agony of that poor boy, I was glad I only have BEB and Meige. I did have to marvel at the technology involved that enables the surgeons to detect the exact problem sites in that wondrous maze that is the human brain, as well as the human skills to correct the problem.
I am very happy for Ed that once again he is able to lead a normal life.
I think that's exactly the surgery Dee had. A few days ago she had to go to the VA hospital in S.F. for an anjustment, now I even know how they do that, from the outside, quite amazing.
The number mentioned was 300,000 and I keep wondering what percentage of that number are people with our affliction, I don't suppose anyone knows?

Christel




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Re: Dystonia on TV/Did Anybody Watch?Yes I did.

Re : Re: Dystonia on TV/Did Anybody Watch?Yes I did. --- Delaine Inman
Posted by Sally - in - Idaho , Aug 18,2001,14:15 Top of Thread Archive
That is the surgery that Dee had. The neurologist that I go to is the only doctor north of Californa who has been given approval to do it, and he was featured doing it for Parkinson's. He was very interested when I told him that Dee had had the implant for dystonia, and he did contact her about it.

The dystonia segment on TV was very good and it was so wonderful to see a happy ending for that young man after seeing the terrible contortions he had been going through. Uppermost in my mind, as I'm sure it is in most of you, is the prayer that my blepharospasm/Meige never progresses to that state.

Sally in North Idaho where the heat wave has finally broken.




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Re: Dystonia on TV/Did Anybody Watch?Yes I did.

Re : Re: Dystonia on TV/Did Anybody Watch?Yes I did. --- Delaine Inman
Posted by kathy , Aug 19,2001,08:11 Top of Thread Archive
yes june, i watched it and it was absolutely heart wrenching!! i'm glad it had a happy ending but didn't they mention that it was not known how long the dbs surgery would last? i can certainly identify with him on the pain thing, i don't know how i lasred so long without the celebrex. did he have a very severe form of dystonia or is that how most people with it are. i can't get over it.



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Re: Dystonia on TV/Did Anybody Watch?Yes I did.

Re : Re: Dystonia on TV/Did Anybody Watch?Yes I did. --- kathy
Posted by Christel-California , Aug 19,2001,10:25 Top of Thread Archive
Kathy, I believe they said he had a rare form of dystonia, probably more severe than other dystonia sufferers.
Christel



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Re: Dystonia on TV/Did Anybody Watch?

Re : Dystonia on TV/Did Anybody Watch? --- June in Toronto
Posted by Kelly Saffell , Aug 18,2001,15:07 Top of Thread Archive
I watched as well and was also glad that beb/meige is all that I have. I thought it was a remarkable story. Someone asked what percentage of the 300,000 with dystonia are beb - I saw a while back on the bb that an estimated 60,000-80,000 have beb.



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