| Posted by yvon breton ® , Dec 22,2001,20:59 |
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Hi June,Happy to hear from you. I lived in Etobicoke for 11 years.
The experiments with hemifacial spasm and blepharospam were reported in the "Behavioural Psychotherapy" (1985) 13, 229-242. Don't be fooled by the name "behavioural psychotherapy". It was then considered a behavioral approach, but now neurological studies show there is much more to it - something to do with the somatosensory cortex. (See the interesting article reported by Tim in the case of focal dystonias at: http://www.the-scientist.com/yr1999/feb/research_990201.html).
Back in 1995 I corresponded with the author of the experiments (in Hong Kong) to see if it could be applied to Spasmodic Torticollis. I didn't have true success but just enough to convince me that sensory cortex "remapping" is certainly an avenue to be explored when nothing else works. I'm presently trying something similar through immobilization (an even longer story...).
I just found my notes of that time in which he writes: "I have had some success treating patients with hemifacial spasm (and blepharospasm) using a massed practice approach which requires VERY slow intentional reproduction of the spasm as accurately as possible." It is done 50 times, thrice daily.
The fact that there has been no reports about it since may throw some doubts on the value of this approach (ei. if it works, then how come we don't hear about it?) But I think it is worth exploring. There could be many reasons why this approach has not been followed through. Personally, I over the years I could not get a straight answer from anyone. I was thrown off at that time because it suggested that dystonia was psychological, but now we are finding out that this is not the case and that this approach is still valid.
Of course I would also like to repeat the standard warning about trying something like this. But if you can find the article in the 1995 journal mentioned above, I remember that it provides detailed explanations and you may want to give it a try. The dilemma is like this: this approach requires a lot of determination because all kinds of people will tell you that this is all wrong and that you should just "stick with the program"(!); on the other hand, it is true that it may cause aggravation and in that case I suggest you don't force it. The results are supposed to be immediate and the person is supposed to feel relaxation of the entire body as well. In other words, if it doesn't make you feel better, don't do it. If you are happy with your present treatment, don't do it.
I hope you can make good use of this, and if you do, please keep me informed. I would appreciate it very much. I've been sharing this experience with everyone since the Internet exists. People who have been around for a while will remember my first freenet website on dystonia in 1994-95. It was even reported on CTV in Ottawa, Toronto and Vancouver - with the journalists and camera crew coming to my home, etc. But still not many people have considered this approach with the seriousness it deserves. And of course I don't have the results to prove anything because neck muscles are very complex... but I'm trying.
Hope is not a bad thing...
Yvon
yvonbreton@videotron.ca
Re: BEB/Hemifacial Exercises/Yvon
Hi Yvon,Thanks so much for sharing this information with us all and for giving us the link to the article that Tim originally posted on the Dystonia bb (that went missing). After the holidays I'm going to look into it with great interest but do take heed of your general word of caution. Dystonias are definitely NOT psychological caused but the psyche is very much involved so, as you say, this approach is still valid. I'll definitely post back and hope others will as well with their thoughts on the subject. I appreciate you taking the time to tell us about this and wish you success with the immobilization technique for Spasmodic Torticollis. Best wishes. June in Toronto - P.S. Etobicoke is still alive and well:-)
Re: BEB/Hemifacial Exercises/Yvon
I'm bumping this up to page 1. I haven't been able to get an article on Behavioural Psychotherapy (1985) 13, 229-242 by Tim ?. I did get an article on "Research: Recent Findings Lead to New Understanding of Dystonia" at the link Yvon Breton provided. Is there anybody with some computer savy that might try to find this article (you need to register first) and report back?. Thanks. June in Toronto (beb/meige)
--modified by June in Toronto at Wed, Dec 26, 2001, 20:51:42
Re: BEB/Hemifacial Exercises
Yvon kindly answered my post again on the Dystonia board - if you care to check it out. I will attempt to get the full article (1985 in Behavioural Psychotherapy) from the U. of T. when it reopens in the new year. The author suggests "using a massed practice approach which requires VERY slow intentional reproduction of the spasm as accurately as possible - giving total relief for some (beb/hemi patients) adding whole body rlaxation" - "practiced for about 50 times, thrice daily...."
It might be interesting to read the whole article and see what we think.June in Toronto (beb/meige) who is also under the weather with a rotten cold - bah humbug!
Re: BEB/Hemifacial Exercises
yes , june , i would be interested in reading it. was this doctor's approach to treating beb mentioned at all at the conference or in the newsletter at all? how much success does he have with this method?
Re: BEB/Hemifacial Exercises
Kathy, I only know what Yvon Breton posted about it on the Dystonia bulletin board - you can check that out for yourself. I will try to get the full article once college commences again and see how much of it I can post - we don't have a scanner and I don't know how to do that anyway. Will see what I can do.June in Toronto (beb/meige)
Re: BEB/Hemifacial Exercises
i look forward to seeing it june. i have a hard enough time keeping up with this bb.
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