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?

Scrumptious (Yum....you're making me hungry), I'm convinced of that with regard to my PD symptoms.

On my way home when I get on the bus, I keep my scarf wrapped around my face, and my face is much more relaxed and feels quite normal. The swaddling effect is soothing.

I have a scarf on my head, one around my neck and one around my lower hip area. Needless to say, I am not going outside. Those are the areas that really bother me. I get alot of muscle cramping in my neck, so that is the first area I tried. It wasn't dramatic like others have been reporting, but I can say, I have had no muscle cramping in neck when wearing scarf tied around neck. I tried the one around my head because ctena said it made so much difference and made her look 10 yrs younger. I only have scarves and no it did not make me look ten yrs younger unfortunately.
The whole concept does make sense to me and I will continue to wear the scarf tied around neck when it starts cramping again. And that is something I feel comfortable wearing at work.
There were many pages of responses to read but I find myself only reading shorter responses. Dont know if it is my pd, but just don't have the patience to read the longer answers. I know they have lots of good information in them but when they get too scientific, I loose interest. I wwill try and go back later and read more
However, I am so glad I read the initial thread. It is a very exciting concept and so easy. Thank you for sharing that information Everett.

This one puzzles me. A lot of us experience muscle pain of unknown origin. Mine shows up in my left arm. At various times it has been local to the wrist like carpal tunnel and at others it has been the whole arm including the shoulder. It will drift around that area and be entirely different from one week to the next. Or at least that is how it was until about two months ago.

Let me add that this was serious pain. Often I had to struggle to get a cup of coffee to my lips.

Just to see what it would do, and in hopes of getting some sleep, I took an old band I had made by cutting the top off an old sock and slipped it on the arm and onto the sore area. I slept pretty good and there was a comfort factor, so I did it again the next night.

To make a long story short the results were so good that I wear it pretty much 24/7 and now have no pain at all. Unless I stop wearing it for a few days.

I see no reason for it to be so, but it brings up an idea based on the baby binding and so on. Suppose for a moment that we all were traumatized as embryos in some manner such as our mother's stress hormones. And suppose that that is what causes our non-motor symptoms and just ignore the motor ones as coming from a second source.

Many of us share a weariness and wish society would accept the fact that we did our part and now would greatly appreciate some friggin' help. Just let us lay our burdens down. Now suppose for just a minute that that emotion and the fetal experience and the comfort of binding and the feeling of being held and so on is a part of our problem. Remember that we have a placebo effect that runs double the norm. Maybe we want that pill to work REAL bad for a similar reason.

So, what would happen if you took a nice feather comforter and got nekkid and just rolled up in it and let the world go away for awhile? Nobody around to need an explanation. Just you and your blankie. ?????

Libra, a regular silk fabric type scarf does not work for me when I use it on my head. It has to be a stretchy knit scarf, or an ace bandage. Those cause a sensation that results in my face relaxing.

Rick, stress increases symptoms, so anything that relaxes us will decrease some of our symptoms. I do think that we can't just 'tell' our muscles to relax as healthy people can. We need sensory feedback to allow us to relax those muscles. Our automatic system is full of glitches and we need to supply cues to jump start it, to get it to work again more normally.

This is a patent request that interests me due to the weighting aspect of the swaddling:

"Sleepwear for infants, comprising: a suit having an anterior portion, the anterior portion configured to fit over the front of an infant's body, the anterior portion having weighting distributed over at least a portion of the anterior portion to provide proprioceptive input to the infant when the infant is sleeping in the supine position."

http://www.google.com/patents?hl=en&...G+NEUROLOGICAL

Remember a long while back we talked about wearing something heavy on our heads to help with gait issues?

Maybe a lead suit would solve our problems.

A PT might, as well, although the MT would be more attuned to pleasurable (i.e. dopamine producing) sensation rather than ones that are "good" for us. Perhaps a garment with pouches at the proper places to allow the insertion of sand bags warm out of the microwave. Lower back, shoulder blades, etc.