Hi Paula,

No, it's not a cult, it's a plot, an internationl plot. And, what concerns helping PwPs I am the only PwP (Person _without_ Parkinson) here ;-)

No, I do not mean help that way. I like the name PD Power, for example, and like the way people help each other and themselves. Me, I just enjoy puzzles, it is egoistic. And again, about help, Anne has helped me more than I could ever help her.

Good luck
Karine

...you're a woman after my own heart! So brave! So silly looking!

I'm waiting with baited breath. (...bated breath?)

Gawd, I hope it works for you...Going to be a little embarrassing if it suddenly fails as the doc walks in

-Rick

I love you guys!

Anne what a timely and amazing report. I'm especially impressed that it worked so well during your deep Off state. Thanks SO much for your reports and your videos. How wonderful that neuros have documented your results now.

Paula, you're a riot. I bet an ace bandage around your head would work wonders. Let us know ASAP how it went.

Rick and Karine, thank you very much for your valuable imput. Because of all of you, I'm smiling again and it feels so good.

Hi all,

I couldn't get my neuro engaged in the wrappings because he wanted a complete GDNF update. However, I met a gentleman and his wife {he has PD and has had a DBS} whose name is Henry. He asked me if I had PD and we chatted and I told him why I was wearing the funky stuff and they wrote down the URL - so I hope they come in.

Actually, I used a curtain tie for my headband - it is beige like the bandages and could be fastened. lol

Too early to tell tho, I was not focused enough ...will continue!

Paula

Oh my god I told my grandson you saw what?

I saw on the street that lady from that old movie you like, you know the one where she wears the curtains.

Oh you did not. Yes I did but she only wears the curtain tie on her head now.

Oh that's okay I told him maybe she has gained weight and the curtains don't fit anymore.

Anyone want to donate for new curtains for Paula............ lol lol lol

Well I have no idea if I am doing this right, but the normal thing to happen trying to type this - pretty off and waiting for meds to kick in - would be to go into complete dystonia. I have to admit that even tho my body wants to be in dystonia, and this usually means my good side also, the wraps have kept my shoulders unlocked, my toe can be controlled from curling, my hand straightened out, and if i had more wraps i'd see if face and speech would loosen up. my good side is fine - typing with it. I don't see where it's helping me get "on", but it is helping to keep dystonia at bay.

I have wraps on both upper arms, around the chest, both ankles and my bad wrist. i don't have tremor.

Also, i slept with upper arms wrapped and didn't have dystonia this morning.

I think something is definitely beneficial but of course must try many more times.

Count me in!
Thelma that was me on the street...had I seen you I would have come running over so that everyone could see we knew each other!

paula

It's helped me keep dystonia at bay, too, Paula. When my toes started to curl under, I wrapped a scarf around my foot and toes, in a messy fashion, and it helped me enormously. In general, my foot dystonia is much less of a problem.

I have an ace bandage on my calf, and although I don't notice the feel of it it too much, it's helping me walk better. My posture is better when I walk, too.

Dear Paula,

I don't think there is any "doing it right" since thats something that has just been found (most probably it has been noticed from time to time but left aside and unexplained). The worst you could do is find something new.

Yesterday I wondered if it would work with you, because I wondered if your perfectionism would allow you to let yourself go - and finally, it worked!

I wouldn't say it has no psychological reason, because the brain is not divided into a psychologic half and a neurologic half

but at least that proves that even while anxious about how to do etc, it can have an effect.

Thanks you for trying!!
Karine

This one was forwarded to me due to problems posting:

<BEGIN>
I was intrigued to say the least when I read the posts on banding last night. I am visiting a friend in AZ and could hardly wait for morning to ask her for an ace bandage to cut up! Just a tiny background- pd- 11 years, downward spiral the last two or so months, I believe due to stress, my sister-in-law passing away, the sadness of it all, trying to be a support system to my brother, realizing this weekend that there are many life experiences I need to grieve that have surfaced due to my current situation. I have been stumbling, falling, etc, in addition to my regular pd symptoms. One fall on concrete on the back of my head, no blood but scary, numerous daily falls, near falls- liken to a 300 lb. tiptoeing ballerina!, slamming into walls, falling to my knees etc. Last night when I read the banding post I was thinking. “ Oh please, oh please someone say it helped with balance”, although I will take any help I can get. Ahh- morning came and I first tried a wrapping
above each wrist and ankle----nothing, I took them off and thought about what to do next. My first meds (one Sinemet 25/100, one Mucuna 75 mg.), had worked, my 2nd was not working and I was edging around the room holding onto countertops, etc. to keep from falling, I finally gave in and took my 3rd dose an hour early hoping for relief and went to the living room floor to lay down, try the child’s yoga pose, breath, wait and see. I did get relief from the third dose, however, I was still having to use the walls as my guide to walk as I have on and off over the last 2 months. I then tried one band halfway between each knee and hip on each thigh as well as one around my head- here is what I know;
1. It was four hours until I took my next meds, which hasn’t happened since the early sinemet days. When I did take them I wasn’t sure if I should or push it even more, sometimes I suffer some very ugly dyskinesia / drug withdrawals if the wait is too long.
2. I haven’t had to hold onto a wall or any surface since I applied the second bands. I did feel unstable when I took a quick shower and removed them, and they were the first things to go on-when dry.
3. I have not tripped or fallen today! I cannot even begin to explain what that means to me, I have been able to do little if anything with my 15-month old grandson for weeks. I have been unable to help my friend with her baby or daycare. I have been extremely depressed and hopeless. I have at times not been able to walk across the room with something as insignificant as a telephone, or cup of water because it throws my balance off.
4. I believe there is something very real happening. I have been a quiet reader for years and admire and respect the knowledge and information base Brain Talk has provided. The intelligence here never ceases to amaze me. I wasn’t aware of the politics involved until recently, but I won’t go there, I just appreciate your brains- 1 or 2. I am starting to feel dyskinesia and dystonia of my left hand and foot, so I will close and maybe take off the bands and hope for a recharge, if not that is ok too. I am so thankful for a fall-free day, of course some will say, “placebo” but I simply don’t care.
Now this is A-M-A-Z-I-N-G! When I get to the end of my medicated day, sometimes last meds work sometimes they don’t- today was a “don’t” day. Whatever time this occurs I normally take a Valium(10 mg) and a Soma (350) mg) to make it through what is almost a convulsive state of my left leg and foot as well as a painful cramping and arching of my left hand lasting anywhere from 15 minutes to 2 hrs. I took off the bands and stumbled into the kitchen, I took the v and s (okay I admit I always wash it down with a half-cup of Chardonnay) - (well it says, "alcohol may increase the effects of this drug" well-YEAH!) and put the band back on the left thigh and added the previous right thigh band to my left arm above my wrist and doubled it, I also put my head band on and announced my usual scenario,” I’m going to lay down”, instead my left hand is resting calmly on my left leg which is not even twitching except for an occasional toe movement which is now still. It is impossible that
the narcotics started this as it was less than 2 minutes post intake. I am typing w/ my right index finger. I am thinking purple wristbands and who knows what on my head. The main point is I am thankful and you can count me in! By the way while I was editing I began to type two-handed, unheard of for me at this time of the day.
<END>

WoW! Thanks for posting this, Rick. It's wonderful, isn't it?

Personal update: I forgot to put the ace bandage on my right calf today. So the first half of my commute was difficult. The dystonia started quickly, with my foot trying to make a fist as I walked, and I wasn't able to walk heel to toe. I needed my cane and felt unstable.

When I got to Kendall Sq. I dug out my long HUGGS scarf, and wrapped it around my calf. The walk from the station to lab was a breeze. I didn't need my cane, I walked heel to toe, and the dystonia lessened significantly.

~Zucchini