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!

they are speaking about the biblical term -"girding your loins"
keeps the leg from losing strength...
try levi's with stretchy sp? material.
only women with panic attacks, may not be good subjects!

sincerely,
lavender rat!

reverett, zucchini, rosebud et al re banding and creative thinking...
our grandson had severe neuro damage from bacterial meningitis and altho he didn't tremor, he had some symptoms in common w/ my husband don who has pd. one thing we learned was that when the little guy was tired or too excited, we could scoop him up and hold him tight and he would calm right down. this was true earlier on when he was in hospital and couldn't be moved w/o going into terrible screaming and shakes and had to be in a dark room. i made a papoose wrap for him because his own body movements were setting off the reaction and it was amazing what 'bundling' did. as soon as his wheelchair was outfitted with restraints so he couldn't move, he could sit out in the nurses area with all the telephones, the bodies rushing around, lots of loud talking, etc. for long periods of time. he got better in that area but still had to be bundled to calm down. later, his OT at school told me that if she could get the special ed kids into wet suits, she could do wonders with them. we designed a velcro fastening suit for him but his mom, who is mentally disturbed, wouldn't use it...she actually never did any kind of therapy w/him....she seemed to like him debilitated and resisted any help.
nevertheless, we later used the 'bundling' technique w/ another grandchild who was a 'difficult' child and screamed bloody murder when put down to sleep. i papoosed her and off she went.
our experiences on the neuro ward in hospital made me think that neuro patients had lost their rhythm or their feedback mechanism.

another issue: we have done just about everything for this pd...stem cells, zandopa (good), a ton of supplements, hyperbaric oxygen, you name it. i have an earlier post about all the stuff we have done and what worked and what didn't. the only new thing since then is the use of low dose naltrexone (LDN) which has worked very well for mood and allowed don to leave off zoloft. we have also added corvalen for energy. also, we have recently (as a result of my using it for arthritis) increased his dose of pycnogenol and that appears to have helped considerably. i didn't know it is an anti-inflammatory until recently. we have stopped the C iv's as he began to react badly from that after two years of help by it. i have asked and researched and no one knows why he had the adverse reaction but they never knew why he had the good reaction to C. i think that it acted to raise his insulin levels and at a certain point, that was no good.

we have not tried banding but will do so....i had to laugh as i have always said there is some sort of ace bandage gene in don's family. we have four children and two are adopted. our two natural ones loved the aces when they were kids....i once found one sitting on the toilet totally wrapped up like a mummy. my husband always reached for aces but i thought that was a hangover from his old football days. maybe not. i'll keep you posted.

w. regard to glucose, i think in that earlier post, i described equine polysaccharide myopathy which is astoundingly like pd (according to our friend who teaches vet science at UGA and shows horses).....lumbar area gets 'tied up', legs won't cross on the turn, horse goes down and has to be put down if he doesn't get immediate treatment. treatment is low carb, high fat (for calories since horse can't process glycogen properly and it builds up, causing the muscles to lock). also, selenium, E and i think C. very gradual exercise in small coral with walking only, no room to trot, gallop or canter. in places where horses are big money, like kentucky, they go right into the hyperbaric chamber (usually dragged in on a blanket) but an hour later, come prancing out. the horses in question are breeds which have big haunches and/or are bred for high excitability such as morgans, show horses, race horses. dogs and camels also have this problem. yes, camels....apparently, camel racing is the #1 sport in the middle east....the 'poor man's horserace'.
by the time we learned this from our vet friend, we had already figured out the carb and exercise thing. it is really hard to keep don from doing more exercise than he can tolerate since he was an athlete but he was certainly a hypervigilant one...always ready at the starting gate.
i often think that don has some sort of enzyme missing which processes glucose properly. we have thought to get tested for that but it is hugely expensive. byw, we also know that he has to have 3000 units of E daily or he deteriorates.
i do see the difference when he controls carbs.

just last week, there was an ad in the paper for argentine tango right here in our community so we will certainly look into it.
please comment on what i have written.

Thanks for the update. I think you are right about there being a role for glucose. Glucose problems seem very common in PWP. I think there is a lot more, but it all interlocks. One thing I have wondered about is a possibility of problems with glucose transport across the BBB. This would presumably cause swings from hypoglycemia when transport fails to hyperglycemia when the BBB fails. Standard tests probably wouldn't pick up on what was going on and the patterns might be so complex that clinical observation wouldn't either. Both conditions play heck with brain cells.

Some researchers suspect that Alzheimer's is in fact a form of diabetes. PD might have a similar component.

Sinemet purportedly causes a short term drop in glucose. Whywould it do that?