During the chaos of the demise of BT1, I briefly posted info on a discovery I had made quite by accident. This was the phenomenon that resulted from wrapping a PD afflicted limb with a restricting band of one sort or another. I dropped the subject and began working with a French researcher, Anne Frobert, MD (as well as PWP).

Anne, in particular, and I have put a lot of time in exploring this and have some theories, but for now I would rather ask you to view the films and experiment a little yourself and share your reactions.

Briefly, about a dozen or so have tried this and almost all have been surprised and some outright shocked. Something happens that current views of Parkinson's do not explain. Some examples:

1) I can normally stand to fish at my favorite lake for about thirty minutes before needing a chair. If I put two elastic bands (Ace type) around my thighs like garters when I start, that time increases to three to four hours! It doesn't work as well if I wait until feeling weak, so the effect is preventative more than restorative.

2) If I stand and balance on my strong leg, the time before my other foot touches the floor averaged three to five seconds. Placing the same bands in the same position immediately incresed this to eight to fifteen seconds (the spread over ten touchdowns). Removing the bands immediately put me back to baseline.

3) Anne and I both noted a strong effect on dyskinesias. In my case, while experiencing DK of neck and face, I put on a headband and the neck portion quickly ceased. You can see Anne experience a similar result in the videos.

4) But the really interesting part is more subtle but you can see it in the films as well. While observing Anne's videos testing different wrappings of different limbs, I noticed something not obvious to her at the time. Her Parkinson's mask came and went as well! Her face lost its wooden nature at the same time as her arm began to function as well. She noticed too that her English came easier.

We have been forced to conclude that rather than being limited to a particular group of muscles the true effect is happening in the brain itself, probably in the areas that integrate the signals and feedback loops involved. Anne is preparing a thorough report of her findings and we will post that as it becomes available.

In the meantime, I invite you to see the films and start to rethink your view of PD.

http://www.youtube.com/watch?v=87PZ-L7emnw
http://www.youtube.com/watch?v=nING3HTwr0o
http://www.youtube.com/watch?v=JuvvskQoBCU
http://www.youtube.com/watch?v=Z-rHnlRubnY

-Rick

Rick, even though I have monitored BT2 since its inception and was a very infrequent poster on BT1 you had to go and get a thread that I can't let go.

While I am still waiting for the other shoe to drop, I am still not in need of medications and unless there was something closer to perfect then I choose to avoid any side effects.

My primary symptom is tremor of the right hand/forearm and stiffness in the fingers and while subtle all the symptoms are there.

With that introduction -- I have tried just a simple rubber band in various places on the forearm and feel generally more comfortable, fewer tremor instances and a decrease in amplitude when it does occur. I feel there is some effect on the stiffness and finger tapping ability but very little. It seems to be important to change the position of the bands every few hours. I will try a tensor bandage type of band.

Questions?
Why no noticeable effect from a watchband?
Why no noticeable effect from socks?
What is the similarity to acupuncture pressure points?
What has happened with the fellow that had permanent acupuncture?


thanks ,,, ken

it is so maddening to be sitting on something this mind blowing and not be able to get someone to just try it. Thank you, Ken. I hereby make you a member of the White Rats

to answer your questions as best i can:
1- at least one WR has reported worsening of symptoms when he takes his watch off.
2-4 we don't know yet

this is something brand new. we have looked hard. we need more Rats!!

I would propose you, Ken, to try a larger wrapping than only one part of forearm.
It seems important to cover quite a large part of skin (maybe something to do with the gate control in sensory loops? I already don't know).
Thanks for reporting results then.

Watch band may be not large enough, though we had this msg from one person.
Socks will work if they are strong enough to stimulate sensory receptors.
No need of compression of limbs.

No evident link with acupuncture points made for the moment but I personally noticed on my forearm that covering the acupuncture point just under elbow and the one just upon wrist enhanced positive effects upon my akinesia.
Can't answer to the last question as I don' t know the person.

Hi,

I finally reread and focused on this. It is amazingly simple. Do you have something you can email with directions?

Thanks
Paula

...we aren't making ourselves clear - there are no directions yet. This really is new territory and we need people to try it and report back.

I'm glad that Anne showed up here as she is "lead rat" on this. Unfortunately she now has to be gone for a few days so I will try to sum up a little.

The effect- which I hereby label the FREE (Frobert-Everett Effect) because I tripped over it, Anne has done the work, it doesn't cost anything, and I like acronyms - anyway the FREE is instantaneous so you know right away. HOWEVER, we had one report where it kicked in after a two hour wait.

It has been effective against a wide range of symptoms.

Tension of the band does not seem to be critical, nor does width. We need feedback here,

It has a strong preventative action at least in my case. Keeps muscle tone where I would expect to lose it.

Unfortunately, I just noticed the time and must head for my day job. I will continue this when I return. In the meantime, boldly go where no man has gone before....

PS- I urge you to welcome Anne. She is a great asset to our little community but was concerned that her command of English would be a problem. Lordy, she's better at it than most of my relatives!

Ok this is the third try..after spasing the first two back into cyberspace.

I will admit that I figured you didn't have the directions and you have been clear. I'm leading into suggesting you do a one page fact sheet...lol.....with directions that can be posted and emailed....rather than wait for people to show up.....i wouldn't wait...that's why we never get treatments out - we wait and wait and I know you already know this.....preaching to the choir.
Can anybody help him? This is a very simple thing to put together and if it helps with dyskinesia its worth it.

paula

because i almost lost this one too due to dyskinesia, I urge you to try this experiment....This time I sent it before saving Anne's welcome.....could have been worse - made it up in 3.5 attempts.

Welcome Anne from France! Its enjoyable watching your discoveries, keep them coming I know you are away first.

Rick, Anne, et al - fascinating! A picture's worth a thousand words, ANne, thank you!

I am sitting here 45 minutes after I 'should' have dosed and am feeling relatively ok after a baaad morning. It's chilly here and I still have on my jacket and am wondering if the lack of dyskinesia - which I call drug withdrawal, pure and simple - is due to the light stimulation of my arms in sleeves. Normally I would be squirmy.

OK. I'm going to hunt for bands so I can be part of this grand endeavor. And I'll put on the blue glasses, too. Ibby

I have returned!

First, Anne maintains a mailing list of PWP and has several replies which have been forwarded to me. I am going to post them but remember that some have been translated into English from French and into French from assorted third tongues. But it is pretty kool!

<BEGIN>
Reactions to Anne's mail where she tells the list about banding and blue glasses.


* Crazy!
* Yes, but it works!
* One man talks about his wife, thinking that the things he noticed were particular to her. At the same time her skin was and became more and more sensitive to small unconfortable things (like a fold in the sheet) as PD progressed, and simply holding her wrist a couple of minutes when she's trembling/stiff (Kcomment : I thought one shivered or became stiff, that it was two distonct forms of PD?) allowed her to sleep several hours. Placing a tiny pillow under her knees when she's lying reduces then suppresses her legs stiffness. Her skin responses are sometimes very strong and are unexplained yet. Also noticed a quick (one minute), relaxing action of controlled slowing down of her breathing on the reduction of amplitude and then stop of her tremor. He also wants to understant the effect of rythmic movement sollicitations (hands, arms, legs) with which he used to relieve her in a couple of minutes, putting her in a sitting position on the edge of the bed, that made her have several hours of good, efficient sleep. She also made a brief try of blue glasses which she put up following the instructions of a website, but it didn't work.
* A woman has used banding for a long time and now it is maybe the only way she can be relieved in her painful moments. When her hand and arm are banded to her convenience, not too tight, not too loose, it allows her to make gestures that would be difficult without that help. It is the same with walking. She artculates her feet much better when they are tightened in the off period. She has bought broad rubber bands to have in place of the bandages she sometimes prefers ti others. (People in the neighborhood are now used to see her with a banded limb, not always the same, when she goes for a walk, but it has raised a lot of interrogations before!) Her husband also looks for items that can have the same effects as the gestures he makes to relieve her, they found a vibrating mattress and he is looking for a table that gives electric impulsions and vibrates.
* A woman says she had already noticed that when she took an item with her hands or when she sat down when she was lying or standing, her tremor stopped, simple epidermic contact : either someone puts something on the concerned part of the body, or that part of the body touches something. She tried the band around her arm and it worked.
* One woman is used to touch anything, a tennis ball, a seat, to have that effect
* One man tried banding on his wife but it didn't work, wonders if she might not have enough off periods because the illness is "recent" - six years.
* One woman noticed last year that when she felt pain in her right wrist, using a rubber band, not too tight, allowed her to use her right hand again and stopped the tremor. Now she uses support stockings to ease the shivering of her right leg. It makes it disappear instantly and she can fall asleep. She also has an electric device which she rubs on her skull, face, sensitive zones like cheekbones, temples and feels better straight away. Her brother-in-law's young neurologist adviced him to wear support stockings and not to take them off.
* A physiotherapist who works in a thermal cure center writes that when he starts to lead a session of relaxation therapy, most of shiverings and dyskinesias stop (is it the sound of his voice, the closing eyes, the letting go, he wonders). But, in the opposite he has also noticed some people who had no tremor nor dyskinesia start to have them at the start of the hour. He thought it was emotion, the fear of loosing grip...he tells how a person started shivering when she had to talk about herself and thinks that if PwP could learn to manage stress and emotions they would have less symptoms. Two persons (with whom a trust climate had already been established) had their symptoms stop when they started breathing exercises.
* One man had the opposite experiment. He took off his watch and his fingers had not the same dexterity. He said he now understood why, some mornings, he wrote less easily than others : he must not have been wearing his watch. On the other hand, he is not too glad to realize that a symptom might have been hidden by his watch and that he is, in fact, more handicaped than he thought.
* One man, PD diagnosed for 7 years, working, 600 mg l-dopa + 2 mg celance, reports has started to ride a big Kawasaki bike three years ago and made 5000 km. It surprised a lot of people especially since he starts shivering when he takes off his helmet and gloves. He tried once an experiment, took no medication, but took off his throuser's belt and put it around his head...and made 200 km with no problem. (And when he took off the belt, the tremor came back. He put on his helmet to continue typing

<END>

I think it is clear that something is at work here, but what?

I am going to let Anne address that upon her return next week.

-Rick

I will make an attempt to sum up what we know and suspect in a form that can pass for instructions to at least begin experimenting. Please give feedback as you try this and I will revise as needed.

1) The basic idea is that PD symptoms, for reasons unknown, can be, in whole or in part, prevented, lessened, or delayed by the application of a sensory stimulus. The form of that stimulus so far has been the wrapping of cloth bands around various parts of the body. It is quite possible that other forms of stimuli have a similar effect but haven't been found yet.

2) The simplest example of this is the placing of a rubber band around a wrist to observe the action on a tremorous hand. More elaborate uses have involved headbands, various wrappings of arms or legs, and suspender-like arrangements. It is not always necessary that there be tension on the band. Just a lightweight strip of cloth loosely draped has proven effective. For example, in the videos you see upper body dyskinesias stopped by a simple shawl across the shoulders.

3) We do not yet know how much the effect varies between individuals so what works for one may or may not for another.

4) Banding a part of the body may relieve symptoms in a seemingly unrelated part. Anne believes that maximum benefit comes from banding the area of the worst symptoms.

5) The effect almost has to derive from the brain as opposed to the limb or there would not be this non-local response.

6) Bands can be simple rubber bands, cloth, rope, etc. In one case draping a very large sheet of paper over the area produced an effect. Gloves have been found to ease typing problems is another example.

7) A good test is to stand on one leg and time yourself both banded and not.

Well, I wish I could tell you more but we are writing this one together, folks!