2 PAPERS DISCUSSED BY YVON BRETON ON DYSTONIA AND BEB BB


Posted by June in Toronto (June Floyd,June in Toronto), Jan 15,2002,10:46   Archive
I managed to obtain and read both the papers Yvon discussed (see `Canadian Doctor Referrals' and `BEB/Hemifacial Exercises' Dec.16/01 on the Dystonia board and `BEB/Hemifacial Exercises/Yvon' on this BEB board, dated Dec. 27th/01).

The two case reports are outdated (1981 and 1985) but appear relevant. They talk about 4 subjects - 2 beb and 2 hemifacial case studies - "they all were successfully treated by behavioural techniques, namely massed practice and relaxation training". I will attempt (quote from the papers) to tell you about the treatments (wish I could post the articles, but don't have a scanner and wouldn't know how to use it anyway!).

Treatment: "involved repeated voluntary imitation of the presenting spasm as accurately as the patient could manage, baed on trying to reproduce the motor sensations accompanying the spasms proper (i.e., screwing up, then relaxing the muscles. The exercises were intended to tense and relax the musculature in a controlled and slowed imitation of the presenting spasm. The patient was asked to reproduce the `voluntary spasm' as slowly as possible in order that an increase in muscular control could occur. Patients were instructed to repeat this `voluntary spasm' repetitively for at least 50 times at one sitting, with rest between `spasms' only if necessary. There were 3 sittings of 15 mins each per day, thus a minimum of 150 `voluntary spasms' were practiced daily".

"Secondly patients were asked to relax their facial muscles as much as possible, and then produce the slightest tension they could to provide `just noticeable difference'-the emphasis was placed on fine control... Again patients wre asked to practice this 50 times, thrice daily in the 15-min practice periods."

"All patients wer also given deep autogenic relaxation exercise instruction and taped copies of the protocol to practice at home on a daily basises. Additionally, patients were verbally reinforced for practicing the exercises and encouraged to verbally reinforce themselves after each practice session (primarily to encourage treatment compliance rather than influence the spasm directly".

A. patient with beb - beb ceased after 23 weeks - 15 months later was still free of beb.

B. patient with beb - after 2 weeks beb had improved - at 6 months no more beb.

C. patient with hemifacial spasm - after 8 weeks reported 50% reduction in the severity of spasms - then went on to complete remission.

D. patient with hemifacial spasm - "failed to achieve the dramatic level of improvement of patient (C) but was able to maintain her improvement...."

References:

"Hemifacial Spasm and Blepharospasm: Case Reports, Treatment Considerations and Implications for Eiology", R.Fielding, Behavioural Sciences Unit, Dept. of Community Medicine, University of Hong Kong, (Behavioural Psychotherapy, 1985, 13, 229-242).

"A Behavioural Treatment of Blepharospasm: Two Case Reports", Richard Fielding (Bolton Gen. Hosp, Bolton, U.K.) and Rachel Gunary (Univ. of Manchester, U.K.), (Behavioural Psychotherapy, 1981,10,184-188).

HOPE YOU FIND THIS INTERESTING. June in Toronto (beb/meige)




Recommend Current pageAuthor Profile
Replies to this message


Re: 2 PAPERS DISCUSSED BY YVON BRETON ON DYSTONIA AND BEB BB

Re : 2 PAPERS DISCUSSED BY YVON BRETON ON DYSTONIA AND BEB BB --- June in Toronto
Posted by Pat Soulia , Jan 15,2002,17:39 Top of Thread Archive
Read you message re: Yvon Brenton's papers - I would be interested in reading his papers but don't know how to log on to do this. Can you e-mail me at esoulia@enter.net or perhaps post how to do this on the BEB board. Thank you for your help.
Pat in Stroudsburg, PA



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: 2 PAPERS DISCUSSED BY YVON BRETON ON DYSTONIA AND BEB BB

Re : Re: 2 PAPERS DISCUSSED BY YVON BRETON ON DYSTONIA AND BEB BB --- Pat Soulia
Posted by June in Toronto (June Floyd,June in Toronto), Jan 15,2002,20:02 Top of Thread Archive
Pat, Yvon didn't write the papers - I referenced the papers at the bottom of my post so you could try and obtain them from a medical library near you. You can check the discussion that Yvon had with others (about the 2 papers), on the Dystonia bulletin board, title and date of which I gave also in my post. Let me know if this still isn't clear.

June in Toronto (beb/meige)




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: 2 PAPERS DISCUSSED BY YVON BRETON ON DYSTONIA AND BEB BB

Re : 2 PAPERS DISCUSSED BY YVON BRETON ON DYSTONIA AND BEB BB --- June in Toronto
Posted by Christel-California , Jan 15,2002,18:34 Top of Thread Archive
June, I find this very interesting and would also be interested in reading the papers.
I don't understand though, if this treatment is so effective, why isn't it more widely known and used as a treament option before Botox and surgery?

Christel in Ca. somewhat puzzled




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: 2 PAPERS DISCUSSED BY YVON BRETON ON DYSTONIA AND BEB BB

Re : Re: 2 PAPERS DISCUSSED BY YVON BRETON ON DYSTONIA AND BEB BB --- Christel-California
Posted by June in Toronto (June Floyd,June in Toronto), Jan 15,2002,20:05 Top of Thread Archive
Christel, please see the references (2) at the bottom of my original post - this tells you the names, authors, dates, and name of journal of the 2 papers with page nos. You could perhaps get them through a medical reference library near you.
I don't understand either why the treatment isn't more widely known. I will ask my neuro next time I see him.

June in Toronto(beb/meige)




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: 2 PAPERS DISCUSSED BY YVON BRETON ON DYSTONIA AND BEB BB

Re : 2 PAPERS DISCUSSED BY YVON BRETON ON DYSTONIA AND BEB BB --- June in Toronto
Posted by colleen , Jan 15,2002,18:46 Top of Thread Archive
Thanks June, I find it very interesting. I also wonder way no one has not told us about it
Colleen IN IL



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: 2 PAPERS DISCUSSED BY YVON BRETON ON DYSTONIA AND BEB BB

Re : Re: 2 PAPERS DISCUSSED BY YVON BRETON ON DYSTONIA AND BEB BB --- colleen
Posted by June in Toronto (June Floyd,June in Toronto), Jan 15,2002,20:07 Top of Thread Archive
Hi Colleen, let us all ask this question of our doctors - taking in the references I provided at the bottom of my original post (or better still a copy of the 2 papers if you can obtain them).

June in Toronto (beb/meige)




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: 2 PAPERS DISCUSSED BY YVON BRETON ON DYSTONIA AND BEB BB

Re : 2 PAPERS DISCUSSED BY YVON BRETON ON DYSTONIA AND BEB BB --- June in Toronto
Posted by kathy , Jan 16,2002,05:50 Top of Thread Archive
yes june, very interesting and thank you so much for posting this info ! i assume that this method was used exclusively? (before trying botox) and also do you know if the patients had "reflex"beb or the kind we have? this whole process would take a great deal of time and discipline to do. and also what i think they are saying here is that you can teach the brain to control your body's muscles, the face being harder to control.



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: 2 PAPERS DISCUSSED BY YVON BRETON ON DYSTONIA AND BEB BB

Re : Re: 2 PAPERS DISCUSSED BY YVON BRETON ON DYSTONIA AND BEB BB --- kathy
Posted by June in Toronto (June Floyd,June in Toronto), Jan 16,2002,07:18 Top of Thread Archive
Hi Kathy, glad you found the paper interesting - I did also. Not sure that I can answer your question about the kind of beb the patients had but I'll tell youw hat I know:

A. patient suffered from beb for 4-5 years - eye movements were described as a screwing up of the eyes for no reason and a difficulty in reopening them.

B. patient with severe beb - no apparent cause - started when patient had a glass prescription change - spasms presented an inability to keep eyes open or to open eyes voluntarily once they wre closed.

C. hemifacial patient for 7 years - initial twitch of the eye, gradually spread to include most of the left side of face. No ability to temporarily withold the spasm - chronic in nature.

D. hemifacial patient for 2 years. Initially appeared as swelling of the upper lid (right eye), progressed to a spasmodic contraction and twitching which involved curling of the right side of the mouth.

I'l lhave to let you deduce whether its reflex beb or not Kathy. Hope this helps.

June in Toronto (beb/meige)




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: 2 PAPERS DISCUSSED BY YVON BRETON ON DYSTONIA AND BEB BB

Re : Re: 2 PAPERS DISCUSSED BY YVON BRETON ON DYSTONIA AND BEB BB --- June in Toronto
Posted by kathy , Jan 18,2002,05:04 Top of Thread Archive
june , this is superinteresting. i'm all for alternatives to surgery, but do you know how long 23 weeks of exercises is? it sounds like intense physical therapy. it's good to know that it did work for these patients!



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: 2 PAPERS DISCUSSED

Re : Re: 2 PAPERS DISCUSSED BY YVON BRETON ON DYSTONIA AND BEB BB --- kathy
Posted by June in Toronto (June Floyd,June in Toronto), Jan 18,2002,07:03 Top of Thread Archive
Yes I understand, Kathy, that it is intensive physical therapy - but for those willing to put in the time and effort, who knows what the results might be? I am going to have my botox injections in a few weeks and intend asking my neuro about it. At this point I'm not sure how I would even think about starting something like this. Yvon wears a brace on his neck - we can't do that for our eyelids:-) Mindy seems to be doing something similar so perhaps she will fill us in sometime.

June in Toronto (beb/meige) I am starting a yoga class today - always wanted to do this, so here goes!

--modified by June in Toronto at Fri, Jan 18, 2002, 07:03:59




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: 2 PAPERS DISCUSSED/yoga

Re : Re: 2 PAPERS DISCUSSED --- June in Toronto
Posted by Kelly Saffell , Jan 18,2002,08:45 Top of Thread Archive
I have 2 yoga videos that I do and I really enjoy them. I used to take a class but with the childcare needs and the driving distance I can't do it anymore. I use Living Arts videos and each are 20 minutes. I only drive short distances and when my eyes "act up" on these quick trips I use my yoga breathing and they open back up. Hope you enjoy it!
Kelly



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Yoga

Re : Re: 2 PAPERS DISCUSSED/yoga --- Kelly Saffell
Posted by June in Toronto (June Floyd,June in Toronto), Jan 18,2002,12:11 Top of Thread Archive
I got through and even enjoyed my first class this morning, Kelly. The fact that I'd done 3 solid months of stretching prior to this made it ok for me (I have a continuing back problem) - but without that pre-stretching I would not have been so happy about it(even though I know you listen to your own body and do what you can)! I know the instructor took it very easy on we seniors for this first class also. I came out of feeling a jelly-feeling in my higs - actually it felt good because they don't seem as `locked up' as before. I look forward to weekly classes(without going out of my apartment building-so don't have to deal with wind closing myeyelids!) and a new motivator. I guess you use your Living Arts yoga videos at home (I've never heard of these-tell me more if you care to). Take care of yourself.

June in Toronto (beb/meige)




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: 2 PAPERS DISCUSSED

Re : Re: 2 PAPERS DISCUSSED --- June in Toronto
Posted by Mindy , Jan 18,2002,21:20 Top of Thread Archive
What I do is behavioural techniques using the mind/body/spirit connection.
My goal was to re-teach my brain to send out the right chemicals that
send signals to my muscles to remember how to react "normally".
I do not try to repeat voluntary imitation of spasms.
Rather I try always to keep my muscles relaxed.
I use positive thinking, meditation, relaxation and visualization.
I started about 7yrs. ago, it did not happen over night or in 23 weeks.
It was work and determination
I no longer consider it work, and no longer resent it. I have learned to let go and let God be in control of my life.
It has become my way of life, a very freeing lifestyle.
I was able to come off my Parsitan 4 1/2 months ago and very happy to say my eyes are still doing well.
Mindy in NY - I also did yoga at home with video tapes.





Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: 2 PAPERS DISCUSSED /mindy

Re : Re: 2 PAPERS DISCUSSED --- Mindy
Posted by kathy , Jan 19,2002,05:16 Top of Thread Archive
i'm glad you're doing well!
i find if i blow out with my breathing my eyes will come open but not stay open. maybe i'm not doing it long enough, but it is more then tiring after a while.



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: 2 PAPERS DISCUSSED /kathy

Re : Re: 2 PAPERS DISCUSSED /mindy --- kathy
Posted by Mindy , Jan 19,2002,15:17 Top of Thread Archive
Kathy,
The deep breathing is not going to keep your eyes open, it's going to relax your mind and body.
When you inhale, breathe in through your nose.
Slowly filling your chest, then stomach. Watch your belly fill up like a balloon.
As you exhale through your nose, release the air from your belly first, then your chest.
It takes time to build up. Try 5 minutes.
I also found biofeedback helpful in learning to control my breathing.
Mindy

--modified by Mindy at Sat, Jan 19, 2002, 21:14:08




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: 2 PAPERS DISCUSSED /june

Re : Re: 2 PAPERS DISCUSSED --- June in Toronto
Posted by kathy , Jan 19,2002,05:10 Top of Thread Archive
june, i'm sure you will enjoy your yoga class, just remember to stretch slowly and don't overdue it. they have some really strenuous positions. i must start mine again, but i keep pinching a nerve in my lower back.

when you click onto this link, were you aware that they ask you for your e-mail address? does the dystonia group always do this? it's from a site called " the scientist".




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: 2 PAPERS DISCUSSED /kathy

Re : Re: 2 PAPERS DISCUSSED /june --- kathy
Posted by Mindy , Jan 19,2002,15:02 Top of Thread Archive
Kathy,
When you give your email address, that registers you and allows you to read the articles.
When I went there I subscribed to their newsletter. I enjoy reading these type of things.
Mindy

--modified by Mindy at Sat, Jan 19, 2002, 21:15:11




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: 2 PAPERS DISCUSSED /kathy

Re : Re: 2 PAPERS DISCUSSED /kathy --- Mindy
Posted by kathy , Jan 24,2002,05:26 Top of Thread Archive
thanks mindy. that request has never popped up when clicking on a link before and i was wondering if this was "normal behavior" for my computer.



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: 2 PAPERS DISCUSSED BY YVON BRETON ON DYSTONIA AND BEB BB

Re : 2 PAPERS DISCUSSED BY YVON BRETON ON DYSTONIA AND BEB BB --- June in Toronto
Posted by Mindy , Jan 16,2002,13:35 Top of Thread Archive
Hi June,
I found this article very exciting. Thank you.
In the past, I did research on what I called "re-training" your brain.
Unfortunately, I lost all my URL's when my computer broke.
I would like very much to get in touch with Yvon, would you know how I can do that?
thanks,
Mindy



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: 2 PAPERS DISCUSSED BY YVON BRETON ON DYSTONIA AND BEB BB

Re : Re: 2 PAPERS DISCUSSED BY YVON BRETON ON DYSTONIA AND BEB BB --- Mindy
Posted by June in Toronto (June Floyd,June in Toronto), Jan 16,2002,17:04 Top of Thread Archive
Mindy, you can post to Yvon on the Dystonia Board (he also reads this bb sometimes) - then we could all see what he has to say (I still need more information). OR you can e-mail him (I don't think he'd mind me stating this as he posts it on the Dystonia bb) at yvonbreton@videotron.ca

Please let us know if he tells you anything we should know - he is doing the exercises for cervical dytonia, not beb, and of course he warns people "about trying something like this without a doctor's approval". He also says (see "Canadian doctor referrals" post, Dystonia bb, Dec. 16th/01) "I knjust know there is a way around this (surgery). I'm attempting something new along those lines which involves botox and sensory exercises that I made myself. The idea of the project is my doctor's but the exercises are mine. I've based them on my experience over the years and correspondence with various professionals treating dystonia in Hong Kong, France and Peking. They are complicated to explain and I'm not planning on saying more until I get more tangeable success. I've seen too many false starts".

Good luck Mindy.

June in Toronto (beb/meige)




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: 2 PAPERS DISCUSSED BY YVON BRETON ON DYSTONIA AND BEB BB

Re : Re: 2 PAPERS DISCUSSED BY YVON BRETON ON DYSTONIA AND BEB BB --- June in Toronto
Posted by Mindy , Jan 16,2002,17:51 Top of Thread Archive
Thanks June.
I feel I have gotten excellent results with my neck as well as my eyes.
I agree with him that trying to create a spasm is not the way to go.
Letting it come naturally, then relaxing the muscles is the right way
to re-teach your brain.
I will keep you updated.
hugs,
Mindy



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: 2 PAPERS DISCUSSED BY YVON BRETON ON DYSTONIA AND BEB BB

Re : Re: 2 PAPERS DISCUSSED BY YVON BRETON ON DYSTONIA AND BEB BB --- Mindy
Posted by Shirley-Arkansas-USA , Jan 17,2002,16:41 Top of Thread Archive
Mindy,
This sounds very similar to what you have been trying to get all of us to do for some time now. I know that you have been harping (said with love :-) )at me about this for awhile. I'm just not a willing participant. I guess that it is easier to look for a quick fix with a drug or surgery. It all seems like such hard work and I'm already tired. I need an attitude adjustment.

Surely Shirley




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: PAPERS DISCUSSING BRAIN RETRAINING

Re : 2 PAPERS DISCUSSED BY YVON BRETON ON DYSTONIA AND BEB BB --- June in Toronto
Posted by yvon breton , Jan 16,2002,19:47 Top of Thread Archive
Hi June,

This is very exciting stuff! I hope those who will try the exercises will be cautious but I wish you the very best success. The word of caution is only that it is so exciting, that we may get carried away and raise our hopes to high. Other than that, I say let's go for it!

As for why it is not widely known if it works, I think the answer is that things like that take years to confirm. There are only a few success stories to go with. But at the same time this approach is appearing more and more in medical journals. A lot more articles deal with the "deficiency of inhibition" as the cause of muscle activation in dystonia and about "somatosensory retraining". Here is another one from Dr. Mark Hallet who is on the DMRF's Scientific Advisory Board. There are dozens of others discussing it from various angles:
"Disorder of movement preparation in dystonia"
http://brain.oupjournals.org/cgi/content/full/123/9/1765

In one of the articles it says the method requires "full and serious commitment and dedication" - so I will wish you that.

As far as my situation is concerned, I'm in the second month of my experiment with "immobilization" of the neck muscles using botox and a high rigid collar. The basic idea is the same - retraining the brain by presenting it with a different situation (neck can't move). I still have 2 months to go before my doctor can draw any conclusion, but I'm hopeful. If it doesn't give the results, I plan to seek more exercises especially for ST. I'm also writing a letter to the DMRF research group to ask for assistance in this regard, or at least some feedback and confirmation.

Also, thanks for putting my e-mail address on your BB. I've received e-mail from someone on your board who has ST and has interesting experience to share with retraining.

Cheers
Yvon

It must be nice to be June in Toronto. It's January here.




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: PAPERS DISCUSSING BRAIN RETRAINING

Re : Re: PAPERS DISCUSSING BRAIN RETRAINING --- yvon breton
Posted by June in Toronto (June Floyd,June in Toronto), Jan 16,2002,21:36 Top of Thread Archive
Hi Yvon,

Thanks so much for posting to us on ths bb. As you can tell, people are very excited about this new (old) approach - it gives us something positive to think about and perhaps do, and if it hadn't have been for you we would not have known about it.

I wish you great success with your `experiment' - so glad to hear you are working on it with your doctor.

Bet wishes.

June (in January) in Toronto (beb/meige)




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: LINK #1 TO SENSORY TRAINING

Re : 2 PAPERS DISCUSSED BY YVON BRETON ON DYSTONIA AND BEB BB --- June in Toronto
Posted by June in Toronto (June Floyd,June in Toronto), Jan 16,2002,22:41 Top of Thread Archive
A link tothe sensory training article as provided and discussed on the Dystonia Board.

June in Toronto Related link: http://www.the-scientist.com/yr1999/feb/research_990201.html




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: LINK #2

Re : 2 PAPERS DISCUSSED BY YVON BRETON ON DYSTONIA AND BEB BB --- June in Toronto
Posted by June in Toronto (June Floyd,June in Toronto), Jan 16,2002,23:20 Top of Thread Archive
This link provided by and discussed on the Dystonia bulletin board. It talks about "immobilization" - something that Yvon is using in his `experiment'.
I CAN'T SEEM TO POST THIS LINK CORRECTly - you can check it out on page 8 of the Dystonia bulletin board, posted by drums911 (Tim) on Dec. 13th, at 18.26 (his 2nd try at the link) -sorry about that people!
June in Toronto

Related link: http://www.clinical-psychology.uni-konstanz.de/research/focal_hand_dystonia_in_muscians.html

--modified by June in Toronto at Wed, Jan 16, 2002, 23:22:06




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile