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-   -   Can wrapping/banding counter PD? (https://www.neurotalk.org/parkinson-s-disease/1442-wrapping-banding-counter-pd.html)

reverett123 09-23-2006 08:41 AM

Can wrapping/banding counter PD?
 
I am starting a new thread regarding this effect to shift attention away from the videos in the title and make room for discussion of 1) What is really going on; 2) How can we use it right now; and 3) What new avenues of reserch may be opened by this?

Anne Froberg returns home today and will hopefully be able to post a summary of her work thus far on these areas and hopefully more of us will be inspired to test this.

Let me be clear what we are talking about- it may not be a cure (yet) but right now with this simple technique you can have an emergency rescue kit in your pocket that may get you out of an embarrassing situation. You can do something that lengthens your functional time of medication. You can extend your capabilities - often to surprising lengths. All this for the cost of a strip of cloth. No side effects. No waiting for trials. How much clearer can I be?

I will repost the links to the videos for newcomers and later I will move over some of the testimonials from the other thread. But you have to try it yourself to really believe it. It is amazing.


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

reverett123 09-23-2006 10:32 AM

Anne Frobert from sister thread
 
Hello Z.Flower, Hi Kathy, Good afternoon Rick, Salut Karine,

Back home after two days of "personal experiments" I will soon tell you about.
I have read all posts here very quickly, will now read the ones on our french mailing-list and prepare you a "review" of them all.

Remember we are not adpets, believers, sellers or magicians, just PwP's or friends trying to understand some mechanisms of an effect which is new to us but already known by few others.
Sensitive-motor loops are obviously involved in this effect and we may wonder if PD, at least in some of its symptoms and mechanisms, is not linked with disturbances of sensitory part of these loops instead of motor initiation one.

Why? Because if bands or scarf or whatever has been used for sensory stimulation of skin in its deeper part may retablish movements in PD, then motor initiation is functionnally disturbed but not impaired by loss of neurons and their dopamine as traditionnally written.....

Said in other terms, the hypothesis is the following one:Would motor symptoms be a functional consequence and not an organic cause in PD ??
(Shout at me if my words are not easy enough for everybody to understand )

Or both???
Insufficiency of neurons (demonstrated) AND functional insufficiency of remaining ones,
NOT (or not only) because their number is reduced
but because they are sick of (..) and/or functionnally (but with possible reversion) disabled??

Write more soon,
Anne.

reverett123 09-23-2006 10:47 AM

Are we off and running?...
 
...well, there's a PD oxymoron if I ever heard one.:D

I copied Anne's initial post over here and hopefully she will follow. But i'll bounce back and forth at first if needed.

Because we are simultaneously dealing with some weighty issues as well as two or even three languages, I'm going to paraphrase what Anne and I have been talking about and ask her to correct me where I'm wrong.

Sensory-motor loops and thier involvement are a little understood aspect of PD and don't get a lot of attention. The motor aspect from brain to muscle gets some but the other half of the loop (muscle to brain) is just as essential and that seems to be a major factor in this.

By overcoing movement problems with bands or wraps, we are showing that the problem is one of function or access and not structure or damage. In other words, the "dead brain tissue" way of looking at PD is incorrect or at least incomplete. If we can activate a circuit with a strip of cloth there may be other more efficient ways to do it. Maybe permanently.

That's what is exciting. Not some PD parlor trick that offers temporary respite. An unexplained avenue that might be far more important.

If we can straighten up and walk, as several have attested to on this board, simply using a piece of cloth - THEN THE CAPACITY TO FUNCTION STILL EXISTS. We know one way to get to it. Are there others?

annefrobert 09-23-2006 02:53 PM

"E pur si muove" ....Galileo Galilei (around 1623-1630)
 
Rick,

You obviously say things much better than I do in your own language so never hesitate and give corrections to my writings if uncorrect because of language.
Great from you to have accepted to "play" with Karine and myself, and many others if involved as much as we are , and discover other way(s) to look at "the big puzzle with no pattern" PD seems to be
(but is not...just we don't know it yet!).

Let's go back to sensitive-motor loops and, more generally speaking, to anykind of loops or coupled actions (co-actions, retrofeedback and so on) in human or animal body.

In french, we call it the " egg and hen dilemna".
Who makes the egg? The hen. But who made the hen, the egg...

Here, it is the same: no motor command without sensory data, no sensory data without movement.

How is it possible to neglect half of this circle?

"E pur si muove" ("And yet it moves") Galileo Galilei (around 1623-1630)

Yes, "it" moves and when something goes wrong on one side (let say on the sensory one), well "it" does not turn the same, eventually, "it" may stop turning!

One may hypothetize that in PD, the absence or abnormalities in modulation of motor neuronal signals in supraspinal areas and in spinal neuronal network regulation may be the cause of high disturbances in motor signals, all this leading to a final signal of hypertonia (stiffness) and slowness/absence of movement (bradykinesia / akinesia).

But where is substantia nigra in all this?
Well, substantia nigra is a part of the whole supraspinal system, but only a part of it.....only the dopaminergic part of it, other parts depending on NE (norepinephrine, called noradrenaline (NA) in Europe) and on 5-HT (serotonine) and .......on Glutamatergic synapses too.

But dopamine is the only or major neurotransmitter involved in PD as far as we all know?
No, not as far as we we all know but as far as we have all been TOLD....

If no more has been told to you, then more knowledge is required for a better understanding.
Please, read further and more particularly what has been described by neuropathologists from Ohama in 1976 , then Takeda, Wakabayashi and Takahashi in the 1980's to Braak and his staging (first publication in 1996).

See on pubmed :

Ohama E, Ikuta F.
Parkinson's disease: distribution of Lewy bodies and monoamine neuron system.
Acta Neuropathol (Berl). 1976 Apr 26;34(4):311-9.

Wakabayashi K, Takahashi H, Takeda S, Ohama E, Ikuta F.
Lewy bodies in the enteric nervous system in Parkinson's disease.
Arch Histol Cytol. 1989;52 Suppl:191-4.

Braak H, Braak E, Yilmazer D, de Vos RA, Jansen EN, Bohl J.
Pattern of brain destruction in Parkinson's and Alzheimer's diseases.
J Neural Transm. 1996;103(4):455-90.


and all related articles.


Anne
;-)

reverett123 09-23-2006 03:41 PM

One thing I learned from Anne...
 
...is about the work of Braak. The hallmark of PD is a "protein clot" in the sick nerve cell called a Lewy body. These are so tied to PD that the only definitive diagnosis is an autopsy showing their presence in the Substantia Nigra.

But Braak found that they didn't start there - that in fact there was almost a migration of "something" which began in the stomach wall and followed nerves by a definite route up the vagus nerve into the brain and eventually ending up in the SN. And this migratory presence leaves a trail of Lewy bodies in its wake. Virus? Toxins? Bacteria? Rolling autoimmune response?

Well, that's about as far off topic as one can get, but it is fascinating when one considers what a role GI symptoms play and how the vagus controls so much of the body and how the brainstem is where these sensory loops begin to converge on specifc areas with exotic Latin names like lunar craters (the latter of which we know more of than the former). And whatever "it" is passes through those areas one by one, leaving its Lewy body calling card behind as it heads for the SN.

reverett123 09-23-2006 08:25 PM

a new report
 
Received this by email:

<BEGIN>

I'm in a position to report early, very positive results with "banding" (on purpose experimentation this time, as oposed to serendipitous find repored earlier on PDPower).
Yesterday, I used my jeans belt (wider than a regular dress pants'belt) to band around my shoulders in a manner that I could work the tightness of the banding by simply propping out my chest against the fixed lenght of the loop as I felt I needed. This way, I was able to go, without ever switching OFF, from the beginning of the experiment at about 4PM, till I went to bed, at 10:30PM, i.e., 6.5 hours, stretching my doses to the max, in between, which would have normally caused me extremelly excrutianting rigidity every two hours. My condition did still oscillate from best to worst with the level of medicationbut, but I repeat, my worst did not include "OFFs" as usual.
This morning, I'm off to what appears another good day. I plan to continue experimenting with banding to gather data on repeatability and consistency of results, and what to me would be of paramount interest, to diminish my total and extreme dependency on levodopa, signalling the possibility of disease reversal.

<END>

annefrobert 09-24-2006 08:25 AM

UPDRS asserts....and FCC confirms.....
 
Hello,

Back from two days in hospital for neurological and stress evaluation .

I could not stop myself to talk about the banding/wrapping effects Rick has given the name of FREE to, as far as I had to wrap my right arm and right leg to be able to walk into the "movement disorders unit".

Serious consideration by neurologists has been given to my reports and to the 4 videos


THE UPDRS ASSERTS:

Reality of the « FREE » (= wrapping/banding effects) has indeed been conclusively demonstrated and recognized in my personal case, as has their durability

[Nota bene : these last words are underlined so that
1/ no one may understand, think, say or write that this professoral recognition of my very personal case is a general case recognition
2/ no one may use it as a caution for further interpretations and writings,
3/ no one may be influenced in personal trials
4/ no one may wrongly interpretated and attempt to my world famous neurologist's reputation .]

In front of all foreign medical visitors and young doctors specialized in neurology (about 15 persons in my room) following the "boss' tour", professoral recognition has been given to the reality of the "banding effect" in my personal case .
More, objective measurements have been recorded with an evident and important amelioration of my OFFUPDRS evaluation when « with bandages ».

My UPDRS in ON state is of 6, which reflects a high quality of motor response to l-dopa.
Such a good ON state may initially give wrong impression about my PD case severity .
Most people would think I exaggerate when complaining about PD when they see me walk, work and go around in such an appearent good form.

But OFFstate are severe ones, bringing deep disability, as demonstrated below.
For these past two years, I have been able to avoid on/off heavy fluctuations thanks to an optimization program my working group has elaborated. But stressful conditions have progressively impaired length of my ON times and increased my OFF state frequency and duration.



My UPDRS in OFFstate.

Waowwwwww, neurologists gave all conditions on purpose for a really « severe off » test (3 hours delay for tablets intake) .
More, during the first hour and an half, I had the opportunity to discuss about neurophysiology with my neurologist and with members of his team.
This conversation required a maximum concentration from me, which was harder and harder to sustain as off became deeper.
I went back to my room and had to lay down, feeling in a really bad condition. Then I had to wait for an extra 90 minutes delay before a neurologist came to score my OFF UPDRS. I thought they had forgotten poor old me…really hard time…

1.UPDRS in severe OFF state= 40

I felt like « in a thick fog », with a certain and glaucous bradypsychia, an extreme difficulty to concentrate, with slowness of my understanding, thinking and with a real disability for synthesis and cognitive projections . I just wanted to send everyone to hell and « get my dose of levo-dopa ».
Hush !! I did hate this state and my evident dependance to the « gold standard molecule »…’have to get rid of it as quick as possible….

2.UPDRS in "severe off with bandages"= 12

A very kind young doctor put the bandages on me, following my instructions, as I was in too deep akinesia to wrap them on my own .
The effect was "The waking of the Sleeping Beauty"..............
UPDRS was estimated to be about 12 (the test has not been completely re-done from A to Z on all parameters because UPDRS takes about 20 to 25 minutes to be correctly estimated) but

- Very important motor effect (motor disability evaluation went from 4 to 1 on the right, 4 to 0 on the left left, both legs from 4 to 0), instead of impossible gait, I could walk on toes or toes up)
- Evident and witnessed improvement of my speech fluency, same with my voice (louder and much more modulated) and of my face's movements
- Evident improvement in calculating, in reactions to contradiction
- Better and quicker understanding and reaction to an absurd text, less "mist"
- Cogwheeling nearly total disapparition (the test has been done in a "deep off" and the bands are even more efficient if placed before the "off" or when OFFstarts)
- No fall when pulled backwards (balance test)


Neurologists that took care of me noticed the effects were particularly important and remarkable in my personal case. They demonstrated their knowledge of these phenomenons and reported their personal observations, physiotherapists ones and stories & tricks learnt from their patients, all of them being related to positive retroaction of deep sensitivity (proprioception) on muscular tonus and, from there, on motricity.

However, the long duration of positive effects (as far as mine were concerned, at least) under banding conditions has not been commented.

Neurologists I met did not give me the feeling they give real importance or interest about all this.
They talked about it as a simple "trick that a sick person may use to improve personal ON state but not to get rid of illness", which is absolutely true.
But they underlined that " L-Dopa doesn't either cure PD"...which is very true too.
Still, they did not say if L-Dopa was a trick too….


THE FCC CONFIRMS:

To be signaled a very unvoluntary but "splendid" personal demonstration, yesterday morning, which astonished two nurses and a young neurologist..
I have had a bad night and poorly slept. woken up at 5 a.m.
I have swallowed my first dosis of L-dopa entacapone and gone outside to walk a little bit and smoke a cigarette.
As usual, this first cigarette "cut my legs" but since I had a lot more to walk than when I'm home, I have reached complete freezing at the entrance of the unit's corridor.
" Would you like some help? Would you like us to get your bandages?" the nurses asked.

"No », I replied, « if you have any, may I try support hose (stockings)? »

No problem, they had some and gave me a pair of them. I had big troubles to put them on, because my hands were very stiff, too.
But, when support hose were on, the effects on legs were so important ones that, within a second, they could move normally, and even my arms (not banded) immediately relaxed and moved again. Good form came back immediately, impression of exhaustion fade away.

At this very moment, right leg could be lifted up in a very successful manner.
I can’t tell you why it made me think of one of my grandmother, probably because she was an excellent dancer , slightly extraverted and fullfilled with « joy of living », but, suddenly, the same "joy of living" overwhelmed me and, in memory of hers, I started a French Can-Can......of anthology for someone hospitalized in an "movement disorders unit".

A young neurologist arrived in my back and experienced some trouble in swallowing his morning coffee..... FCC :) is not that much frequent among hospitalized PD patients.

As a good physician, he examinated me again, with and then without support hose and gave again confirmation of the huge clinical improvement with the stockings.
He probably reported the whole scenery to his "boss" because, in the middle of the morning, my neurologist and an other professor of neurology came in my room and teased me with a sweet smile : "We've heard that the bandage has worked extremely well this morning! Go ahead ! You are allowed to go home but, prior to any change in your treatments, try to change your schedule and organization of everyday life, OK with this?"

Anne

reverett123 09-24-2006 04:56 PM

It must have been a comic scene
 
Again, I ask Anne to correct me where I err, but I want to be sure everyone understands what happened over the last few days.

Anne, between working like a fiend trying to find the Cure and having her own nasty case of PD, ran into trouble a week ago and ended up in the hospital in France to get her meds regulated. Because of her background (surgeon) and family (doctors everywhere) she had a good and respected team to call on. Some of the best in the country in fact. Her family's medical tradition is reflected in the careful language that she started her report with.

While there she had the opportunity to demonstrate the banding and she really blew some minds but others couldn't quite understand the import of what they were seeing. Being allowed to sink into a very deep "off" state, she persuaded an intern to help her apply the wraps and immediately was markedly better. I'm sure word got around.

The next morning she had to have her morning cigarette and found herself trapped in "off" far from her room. A nurse offered help and Anne asked for a pair of support hose. Finally getting them on she was elated to find that she had control again, including that of her arms! In her joy and showing the nurse the effect, she dance a Can-Can for her!

She didn't notice, but a young neurologist had come up from behind while all this was going on. It blew his mind and word got around. Her doctors/friends just don't know what to make of it, but they were able to document the effect as being real in controlled conditions. It is a great start for something that was unknown a month ago.

kariner 09-25-2006 07:38 AM

Post up!
 
Hi folks,

I am making this post go up again before it falls into oblivion. I would like to urge more people to take interrest in this, take part either in thinking or in trying it out - it's harmless (Ok, now, if someone falls dancing French-Can-Can with bands on he/she could probably sue me and that would be a trial of history, I suppose)

What I mean is it is no drug - no pretendedly miraculous and exepensive over-the-counter precursor of this or that for example, or drug sold on the Net which reliability and composition is all but verified.

It costs nothing, those who tried did it with what they had at home, at work, etc. And thinking, just for the fun of it.

PwPs are known to need intellectual stimulation. How about physical stimulation? (Or both for those who like to "get a headache" :rolleyes: )

Regards
Karine

paula_w 09-25-2006 01:14 PM

Woodstock
 
Ok i have a neuro appt at 3:15, with serious issues to discuss as it sounds like Anne from France and i have similar problems at this point in time. After taking medications for all these years i had my first meltdown.

Heart healthy, so next will look at medications.

So why not go the whole way and give my neuro a double challenge? I'm wrapped in 6 ace bandages and am looking for a headband. It's late in the day, hopefully I can wake him up...lol.

Where's that headband leftover from my hippy wanna be days, and oh perhaps some beads.......I don't want to look llke i've only had a partial meltdown....I'm a perfectonist.

I'll tell him there's a cult on the internet devoted to actually helping pwp right now - very dangerous people. Will let you know how it goes.

:cool: paula

kariner 09-25-2006 02:00 PM

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

reverett123 09-25-2006 02:19 PM

Ah, paula...
 
...you're a woman after my own heart! So brave! So silly looking! :D

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

ZucchiniFlower 09-25-2006 03:20 PM

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. :)

paula_w 09-25-2006 04:47 PM

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

Thelma 09-25-2006 05:41 PM

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

paula_w 09-26-2006 10:58 AM

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

ZucchiniFlower 09-26-2006 02:14 PM

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.

kariner 09-26-2006 03:34 PM

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 :D

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

Thanks you for trying!!
Karine

reverett123 09-27-2006 02:46 PM

here's another i got by email
 
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>

ZucchiniFlower 09-27-2006 05:37 PM

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

paula_w 09-27-2006 06:41 PM

Day 2 with no dystonia. I keep the wraps on alot, giving myself a break from them here and there. I'm retired and can do this when I don't have to go anywhere. I wasn't quite 'on' when my steak was ready to eat tonight so I wrapped my head. Had no trouble swallowing so who knows?

My daughter walked in from work and said, "Oh I see those things have multiple uses." lol

paula

Dylpup 09-29-2006 10:55 PM

No luck
 
Had my husband who is in early stage of PD try the banding on his hand--no difference in speed of turning hand back and forth. Also on his head--no change in speech volume. Didn't tell him why I was doing this until the end. Am I missing something? Any thoughts?

reverett123 09-29-2006 11:42 PM

maybe
 
try wrapping loosely entire arm. use a simpler test like typing. try with light glove.

try wrapping scarf around throat. extend over entire head,

sunflower4u 09-30-2006 12:00 PM

Some Success!
 
Have been following the posts on banding with much interest and started my own experiments last night with the following results.

'Head Band' - unbelievable results! My late evening shuffle disappeared! My posture improved! Could go from sitting to standing without the balance issue! Could step back and turn corners with ease! Face more animated!
Removed the band and improvements disappeared. Put it back on and all came back. Just 'felt' better overall.

Unfortunately have not found the 'banding spot' for tremor when "off'. Tremor is my biggest problem. Also have not found the solution for the grippy toes as the meds wear off. But will keep trying. Think I need more ace bandages! Maybe the mummy wrap will be the answer!


Sunflower

reverett123 01-26-2011 01:54 PM

Wandering through the archives...
 
Thought that it might be a good idea to bump up some of the more interesting old stuff I will limit it to threads that I started simply because there is too much not to filter it somehow. I hope that there is some value here.


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