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

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.

...well, there's a PD oxymoron if I ever heard one.

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?

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
;-)

...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.

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>

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

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.

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" )

Regards
Karine

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.

paula