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!

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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

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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