Goggles for Apraxia? and ECT


Posted by Shirley-Arkansas-USA , Aug 29,2001,12:44   Archive
It was also stated at the conference by Robert Daroff that a Japanese Study had been done on patients with BEB and apraxia of lid opening and two of these patients improved dramatically while wearing tight skiing or swimming goggles. This would be in the category of "sensory Tricks". The sustained and intense cutaneous stimulation is what provides the sensory input for the "Trick" on the brain.

This, I've got to try.


Since my sons have both suggested that I give ECT (Electroconvulsive Therapy-Shock therapy) a try for my symptoms (:-0) , I was very interested in Dr. Daroff's mention of this actually being tried for Meige in 1999. The authors of the article reported that a woman had dramatic improvement of her symptoms after bilateral ECT BUT, unfortunately the improvement only lasted a few days. So, I will tell my sons that I won't be trying that.

Shirley in AR.




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Re: Goggles for Apraxia? and ECT

Re : Goggles for Apraxia? and ECT --- Shirley-Arkansas-USA
Posted by Virginia , Aug 29,2001,15:19 Top of Thread Archive
I think your sons were only interested if they could administer it themselves.



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Re: Goggles for Apraxia? and ECT

Re : Re: Goggles for Apraxia? and ECT --- Virginia
Posted by Shirley-Arkansas-USA , Aug 29,2001,16:32 Top of Thread Archive
Yes, that was the idea. And if they couldn't administer it, they for sure wanted to watch. They are so bad! I don't know where they got their tacky and sadistic sense of humor. :-)

Shirley in AR.




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Re: Goggles for Apraxia? and ECT

Re : Re: Goggles for Apraxia? and ECT --- Shirley-Arkansas-USA
Posted by kathy , Aug 30,2001,06:48 Top of Thread Archive
are you two being serious? or has my naive self just fallen again for a private joke?



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Re: Jokes vs Serious- ECT & Goggles

Re : Re: Goggles for Apraxia? and ECT --- kathy
Posted by Shirley-Arkansas-USA , Aug 30,2001,10:11 Top of Thread Archive
Kathy, I was being serious about Dr. Daroff's mention of these two articles that had been published. One on the goggles and one on the ECT. Virginia and I were joking about my sons. My family has a great sense of humor (some might not think so). They have in fact mentioned to me that I should have shock therapy and they wanted to watch or administer it. They were teasing, though. They have also told me that when I get old, that they will take me to Mexico and place me in a nomadic home with a dirt floor. They don't really mean it, we just sort of have a somewhat sick sense of humor at times. We do a lot of laughing, though.

Serious now:
ECT is electroconvulsant therapy or shock therapy that used to be used by doctors on patients with severe mental disorders-specifically depression. I know that they were doing a lot of this in the 70's.
Electrodes were hooked up to your head, you were sedated, and given an electrical shock that literally caused you to have a seizure. When the patients awoke, they were confused and had a memory loss. The theory was at that time that with the memory loss, the patient also forgot about the depression or why they actually were depressed and then over time their memory returned and they would be able to deal with what was depressing them or it would have gone away. Over the years, this form of treatment was almost abandoned as it was thought to be extreme and cruel.
It has now had a resurgence of use in a modified form. Much less of a "shock" is used, now, and I believe that they are finding that it is a viable treatment option for severe depression. This is where I need Susan Hasselle. I'm not real familiar with how often it is being done now or for what patients and with what results so Susan if you are out there-offer an update on this.

Anyway, it was tried for Meige and or BEB and it did help but only for a few days-so it is not a viable treatment option for BEB or Meige. Dr. Daroff wasn't recommending it-he was just mentioning things that had been tried.

The goggles article was also serious. It didn't work by holding the lids open. It worked by causing a "sensory trick" by applying pressure all around the eye area causing the eyes to open. The brain was tricked.

I'm sorry about the confusion. I'll try to add more smiley faces or something when I am joking.

Shirley in AR wondering if there is a limit to smiley faces per person per day. :-)

--modified by Shirley-Arkansas-USA at Thu, Aug 30, 2001, 10:12:36




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Re: Jokes vs Serious- ECT & Goggles

Re : Re: Jokes vs Serious- ECT & Goggles --- Shirley-Arkansas-USA
Posted by kathy , Aug 30,2001,10:23 Top of Thread Archive
:V:-|



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Re: Jokes vs Serious- ECT & Goggles

Re : Re: Jokes vs Serious- ECT & Goggles --- kathy
Posted by Sally - in - Idaho , Aug 30,2001,18:13 Top of Thread Archive
I can't "read" this one, Kathy. Are we supposed to decipher it frontward, backward, upside down or sideways?? ;~)

Sally in hot North Idaho who is not up on all the latest squiggles




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Re: Jokes vs Serious- ECT & Goggles

Re : Re: Jokes vs Serious- ECT & Goggles --- Shirley-Arkansas-USA
Posted by Joanne Matuzas , Aug 30,2001,14:06 Top of Thread Archive
Shirley, when I heard about the goggles, I had to giggle because friend of mine has been telling me to wear like those welding goggles since my beb started. He will chuckle when he I tell him about it. He also would tease about the electric shock therapy--we never know in
life, do we? Glad your son got room arrgts. :<) Joanne M. San Diego,CA



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Re: Jokes vs Serious- ECT & Goggles

Re : Re: Jokes vs Serious- ECT & Goggles --- Shirley-Arkansas-USA
Posted by Sally - in - Idaho , Aug 30,2001,18:15 Top of Thread Archive
My mother had those shock treatments way back when ... eight of them, I believe. NOT good, and useless. I'm not trying that. My brain is fried enough.

Sally in North Idaho who needs all her brain cells, demented or otherwise!




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Re: Goggles for Apraxia? and ECT/shirley

Re : Goggles for Apraxia? and ECT --- Shirley-Arkansas-USA
Posted by kathy , Aug 30,2001,06:46 Top of Thread Archive
you can see why the goggles and other might help as a manual method of keeping the eyes open, but how cumbersome! my doctor also asked me if i wanted to try some kind of electrical thing like you are describing several years ago, but i said no. can you elaborate more on what it is?



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Re: Goggles for Apraxia? and ECT

Re : Goggles for Apraxia? and ECT --- Shirley-Arkansas-USA
Posted by Mindy , Aug 30,2001,14:38 Top of Thread Archive
I did do some serious thinking of ECT a few years ago.
My conclusion was, No.
Basically because the risks outweighed the results,
if there was any results.

I wanted to ask if they spoke at the conference about
sensory tricks.
For instance putting my finger towards the bottom outer area of my eye, would help.
I was trying to think if we could use a sensory trick of touch, let's say it worked for a few hours, then switch to another sensory trick
to try to re-teach the brain to keep our eyes open.
This thinking would go with what I used to try with crotcheting,
etc.
Also, did they mention some type of surgery that would put pressure or do something to the muscle in the sensory trick area, that might trick the brain into keeping the eyes open.

If this sounds nutty, I'll try to explain my thinking.
They say when someone has to have a part of their brain removed for some reason or other, the other parts of your brain can be taught to
compensate for the loss.
So far they tell us our brain is mis-firing and sending out the wrong signal. What I try to acomplish is to slow down any "over activity"
in my brain signal in order for the "normal" part of my brain to take over and send out the right signal.

Mindy in NY




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Re: Sensory tricks

Re : Re: Goggles for Apraxia? and ECT --- Mindy
Posted by Shirley-Arkansas-USA , Aug 30,2001,15:09 Top of Thread Archive
Hi Mindy,
I don't remember them talking much about sensory tricks at this years conference. It was mentioned but not gone into in any detail. Mostly the tricks like singing when your driving and such. Just a comment here and there. No mention of any surgery for this, either.
Sorry.
I do like your ideas, though. They make sense to me and don't really sound all that nutty.

Shirley in AR.




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Re: Sensory tricks

Re : Re: Sensory tricks --- Shirley-Arkansas-USA
Posted by Mindy , Aug 30,2001,15:13 Top of Thread Archive
>I do like your ideas, though. They make sense to me and don't really >sound all that nutty.
>Shirley in AR.

We could go with "great minds think alike" or more likely
we're both nutty - LOL
Mindy in NY




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Re: Great Minds-nothing important

Re : Re: Sensory tricks --- Mindy
Posted by Shirley-Arkansas-USA , Aug 30,2001,16:05 Top of Thread Archive
I like "great minds think alike"
But really, is anyone going to believe that about me when I take pictures of Dr. A's boots and discuss Underwear on the bb. I'm sure people are waiting with baited breath about the boxer versus brief thing.

Let's just stick with we're both nutty or at least I am.

Surely Shirley in AR.




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Re: Great Minds-nothing important

Re : Re: Great Minds-nothing important --- Shirley-Arkansas-USA
Posted by Mindy , Aug 30,2001,16:43 Top of Thread Archive
>I'm sure people are waiting with baited breath about the boxer versus >brief thing.

I'm just wondering Why??????
Mindy who's as nutty as Shirley, just a little quieter ;)




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Re: Great Minds-nothing important

Re : Re: Great Minds-nothing important --- Mindy
Posted by Shirley-Arkansas-USA , Aug 30,2001,17:03 Top of Thread Archive
I'm wondering Why, myself and Roy is really wondering.
I'm sure that Kathy has a very good reason for wanting to know and I can't wait for her to share it with us. I just hate to give out personal information, though, if my Roy is the wrong Roy. Otherwise, I don't care. :-) I just hope that we don't have to wait a week.

Shirley in AR. who probably should be quieter, but what fun would that be?




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Re: Great Minds-nothing important

Re : Re: Great Minds-nothing important --- Shirley-Arkansas-USA
Posted by Sally - in - Idaho , Aug 30,2001,18:22 Top of Thread Archive
I am so mixed up in the midst of these "great minds": why would your Roy be the wrong Roy? Did you trade him off in Scottsdale? Has he gone into the men's underwear modeling profession in his early retirement? Ho hum. I take a day off and the whole board goes bonkers.

Sally in North Idaho who wonders if lurkers are chucking, or wondering what briefs vs. boxers have to do with BEB.




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Re: Great Minds-nothing important

Re : Re: Great Minds-nothing important --- Shirley-Arkansas-USA
Posted by Sally - in - Idaho , Aug 30,2001,18:19 Top of Thread Archive
I think I missed something: I didn't see any pictures of underwear, boxers or briefs. Was that Dr. A, too??? Shame, Shirley!!



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Re: Goggles for Apraxia? and ECT

Re : Re: Goggles for Apraxia? and ECT --- Mindy
Posted by Sally - in - Idaho , Aug 30,2001,18:25 Top of Thread Archive
Kathy, I think you have an interesting query about the brain retraining itself to do things differently. I am following your train of thought, but apparently this doesn't work for by passing the spasming muscles and having a different area control them so that they work normally. Maybe that only works if a part of the brain is actually destroyed or removed.

Sally, being serious




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Re: Goggles for Apraxia? and ECT

Re : Re: Goggles for Apraxia? and ECT --- Mindy
Posted by colleen , Aug 30,2001,19:47 Top of Thread Archive
Mindy a Sensory Trick that works for me is takeing some ice & put it on the bridge of my nose between the eyes. most of the time they pop open.Sounds silly but it works for me.
Colleen in IL



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