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Posted by: Jeannie from Ohio ® 12/29/2012, 10:41:10 |
It's been a long time since I've been on the BEB bulletin board. The last time I was on I read some posts about Dr. Farias and even looked him up online. Financially, I can't afford to go out of the country to see him. I have had BEB and meige since 1991 and first treated in 1992 with botox-- every 3 months. I am able to drive and teach. However, the facial expressions caused by the spasms is so embarrassing, especially when I teach junior high. I haven't had the botox since June, because I didn't think it was really working anymore. My chiropractor who has training in neurology has been having me do an eye exercise using two mirrors. So far, it really hasn't helped much, because I'm having trouble focusing. I probably haven't been consistent in trying though. My chiropractor and his wife are both chiropractors. They have helped a lot of people with dystonias as well as ADHD. I am their only BEB patient. RE: Dr. Farias. It seems as though there should be someone in the U.S. who uses his method. Wouldn't it be good for him to share his knowledge with other physicians? My chiropractor was very interested in knowing more about this. |
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Posted by: lisao ® 12/29/2012, 11:00:48 |
Jeannie, I think I did read once somewhere (in a flurry of googling at some point)that someone in CA was trying neuroplasticity therapy for focal dystonias. But having seen Dr Farias, I would urge you to think about seeing him because he seemed to me to be a gifted diagnostician and a very inventive neuro-therapist. And a wonderful, inspiring person. He goes to Toronto to a conference in July, and if you write to him, you might be able to see him when he's there, if that is more affordable. (But I would write soon because he might fill up his time there, since each person requires 4 appts, 1-2 hours each. His website is focaldystonia.net and you can email him via the "contact us" tab.) |
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Posted by: Jeannie from Ohio ® 12/29/2012, 17:41:45 |
Thanks for the info. I didn't realize that Dr.Farias just started in June,2012 with his new treatment. I'll think about the possibility of going to Toronto. That would be a lot closer. I forgot to mention that my chiropractor went to a conference that had a segment about BEB. He thinks that I also have apraxia, because of the way my brows move when I struggle to open my eyes. He said that might be the reason Botox does not work as well. I didn't mention that I take Benadryl which definitely stops the spasms for a period of time. |
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Posted by: lisao ® 12/29/2012, 19:57:17 |
Yes, Dr Farias just started seeing patients with BEB last summer. But he's been using neuroplasticity therapy to treat other focal dystonias (esp in musicians) for a long time - I think he said 20 years. One other thing to consider. If neuroplasticity therapy CAN help with blepharospasm, it seems likely it will work faster and better if done early on. (The first woman to see Dr Farias in June--Michelle--had only had BEB 6 months; she responded to the treatment very fast and I believe she is now pretty much spasm-free.) For those of us who have had BEB longer, it's not an easy fix. It takes time, effort, and patience. Carol has worked really hard every day for months. I myself am just getting started and am not nearly as diligent as Carol. It's a challenge! It's like trying to improve your health via dietary changes, new exercise habits, and so on. But I am determined because I don't like the other options. If the blepharospasm is secondary, and the underlying cause is still present, I don't see how neuroplasticity therapy could help. But if not, it seems worth a try. If you are curious to hear more specifics, you could buy the download of Dr Farias's book INTERTWINED and read it. In the second half, he is fairly specific about the kinds of approaches he uses to deal with focal dystonias, if not the exact exercises (which have to be individualized since as we are always pointing out on the board, we're all different).
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Posted by: Carol near Toronto, Canada ® 12/29/2012, 13:33:08 |
Hi Jeannie, I suspect that Dr. Farias will eventually share his knowledge by publishing about BEB, but he may not yet be at the point where he has researched it enough to do so. He only saw his first blepharospasm patient in June 2012. I was his second, in July, and was very much aware that anything he told me would be experimental. I decided to risk it anyway, and am very happy I did. Since then, he has seen a number of other people with BEB, but probably still not what would be considered very many from a research perspective. Then there is the fact that our recovery potential will likely only be reached after a long time, probably years for many of us. I have had some improvement since I trained 5 months ago, but in the last 2 months I find that progress has slowed down considerably, so I realize that realistically, it is not likely to be a scenario of "all better in 6 months". Six months is only the shortest time Dr. Farias said it could take, but since I had had BEB for 9 years before training, I can expect it to take longer. As much as I want to be cured right away, I am learning to be more patient in the areas where I struggle, and more content with what has already improved. Anyway, it seems the brain is more likely to quiet itself if we don't pressure it to hurry. Carol Modified by Carol near Toronto, Canada at Sat, Dec 29, 2012, 13:35:58 |
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Posted by: Jeannie from Ohio ® 12/29/2012, 17:46:55 |
Thanks for the info. I'm going to give this information to my chiropractor. As I mentioned, I've had BEB since 1991. We definitely do need to have patience. I'm thankful that I am still able to drive and to teach school. |
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Posted by: kenavis ® 12/31/2012, 01:21:29 |
thanks i do eyes exercises i take my finger i rotate around my eyes are around my head point it at my eyes are watch a truck going down the road this help your eyes when setting down at a coffee shop look at the windows an see the your self reflecting of the windows are look thru a straw not a good ideal inside a store are eating place but at home help the light shine in to your eyes are close your eyes an touch your noses are ears are face with your one of your fingers ate play basket ball with your eyes close are take to water bottles an touch them back an forth behind your back with your eyes closed reprogram both side of your brain help u to be able to walk an talk an speak better
bio feed back take a water bottle an pitch it up in the air a with your eyes close help you to www.blepharosplasm.org www.dystonia.org take a small ball an rope a can in the yard help you to be able to overcome get some to film you i trying to write a book an make a movie out of my all my new ideals an make a movie out of it but i need help in doing so growing an garden an feed my birds in my yard kenavis |
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Posted by: lastradioman ® 12/31/2012, 11:08:06 |
Dr. Farias has put out two books: 'INTERTWINED' and 'REBELLION OF THE BODY'. I have not read them, and can't speak for them. They appear to be available only as e-books... (just what some of us need - jamming up our eyes reading a #$%%## computer or handheld screen). Nice if his books were available as PDF, or better still, on nice paper with a normal font. |
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Posted by: lisao ® 12/31/2012, 14:42:34 |
If you are interested in details of how the rehabilitation process works, start with INTERTWINED. The first half of the book is mostly stories of individuals with different focal dystonias. As I recall, each person is introduced, his/her dystonia is described, and then sometimes therapy is discussed, sometimes it isn't. The second half of the book is entirely about rehabilitation. It's not terribly long (so probably won't cause too much eye strain). I wonder if you could print that part out? (Or is that not possible with kindle books?) I read the book long before I went to see Dr Farias. I found it very interesting, and it definitely helped me to have read it when I met with him for training. Now, I am re-reading it to remind myself of all the possible approaches to different situations as I do the therapy. I'm very glad to have it for that.
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Posted by: Carol near Toronto, Canada ® 12/31/2012, 16:17:21 |
If you buy the books through the www.focaldystonia.net website, they download as PDF files, although they are a little cheaper if you get them for Kindle. I have them as PDF files, and when I read them, I first highlight all the text, giving them a coloured background, which I find makes it easier to read. I am halfway through "Intertwined" for the fourth time, I believe. Each time, I pick up something new. Happy New Year to all, Carol |
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Posted by: lastradioman ® 01/07/2013, 14:05:09 |
Carol,
Thanks for the ideas. I may order these! Lrm |
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