[reverett123]

Are we really accomplishing what we claim we want by trying to eliminate this effect. After all, it will eventually have to be out in the real world where ocebos of all sorts run wild. And remember that PWP exhibit this effect at twice the going rate, Maybe we should do something rational like maxxing out this mysterious force that is us by looking at things like shamanism and hypnosis.
Rick

PS When I was little I had warts on my hands. My Granny was, for want of a better word, a shaman, having been born into a remnant culture in 1904. She made a big fuss and a little bit of ritual. She was dealing with a five year old and was having fun, but her patient saw her as she was - a great power that could shake the universe (or at least my little corner). Two days later those warts were gone and never returned. If we had someone or something that did away with PD, would any of us quibble about how silly it was? Don't tamper with another man's belief without damn good reason. It is not clever but rather cruel.

Originally Posted by soccertese

john,
me thinks you worry too much. pd'ers sincerely describing alt treatments here i would assume must know they are going to get some discussion and if the benefit was mostly due to placebo, the poster would get feedback from other sources besides this board, in other words, the placebo affect can't last forever and i've never seen any confirmation of a long lasting placebo affect in pd which is not a mental disease.

basically, for a new poster that has not established themselves and i have no idea f they are just marketing something, i'm going to give an hones opinion.

[soccertese]

rick,
billions of people still subscribe to shamins, folk medicine, prayer, spiritual healers, etc. as we all did before western medicine came to be. if there is proof that any of this helps pd, who's hiding it? and i'm not including herbs from which l-dopa was first derived.
any documented cases oF any spinal cord nerve cell regeneration by the power of thought?
i know the brain can reorganize itself after damage, stroke, gunshot, etc. but pd? alzheimer? not one case in thousands of years?
imho, western medicine was developed because the before mentioned techniques just don't work.

AS far as your wart anecdote, i've had warts disappear on their own..

noone expressing an honest opinion is stopping anyone from doing anything they want. it's called freedom of speech.

[Bob Dawson]

Originally Posted by soccertese

rick,
billions of people still subscribe to shamins, folk medicine, prayer, spiritual healers, etc. as we all did before western medicine came to be. if there is proof that any of this helps pd, who's hiding it? .

I am living on pills, for which I thank God. Pure pharma. Pure western medicine, double-blind tested and such like. I also do a lot of music, dance, or some sort of quasi-spiritual thing, and going to the edge of some things. I find no contradiction.
The disease is not going away. It is going to kill me as soon as it can.
But in the meantime, I;ll take my placebos wherever I can find them. All sorts of things - from music to yoga to pedalling or breathing or writing a free book on the internet; bring on the levodopa and the seligilene- and I still LOVE my Mirapex, mix with deep Mississippi Blues or Play4change or the Inuit Wedding Song; add in some ad-lib street theater, and that's my way of reducing the pain and maintaining better functionality and being in better spirits to make it more worth living. And then it will kill me. There ain't no cure, no pill, no herb, no pharmaceutical that will get me out of this,
The pharma pills and the dancing and spiritual stuff and whatever else turns you on does not cure the disease and probably you don't live longer; but the whole kit and kaboddle is to be able to celebrate life and love even if our cruise ship capsizes.
PD pharma and PD shamans make a good combination to help me live with PD. And finding the Zone, where it is good to be alive, makes significant improvement, in functionality and spirit. It is powerful stuff, both the pharma brain drugs and the creative spasms and the new understandings of self and world, seen for the first time in the glare of PD.
but there ain,t no cure.

[paula_w]

pharma controls me 24 hours a day and i've got it down. i know exactly how much sinemet to take and when. i know when i've eaten a big breakfast or lunch i need extra sinemet. itake amantadine and have very little dsykinesia.

i've got a pretty good combination going. i can sleep nine hours with thee help of xanax and clonizipam. they are muscle relaxants that help you to sleep. i try not to use my pain killers but somedays the leg just hurts; the bone heals but the pain from all the muscles and lignaments, etc. forces me to take one. And the therapists want you to take them- inflammation isn't good.

We always said just use the placebo and give it to us anyway eventaully it will reveal itself and if it never does then mind over matter triumphs.

something's gotta give....to cotinue fits the definition of insanity.

[lindylanka]

There is evidence I think that people can affect MS through attitude, and that in relapsing-remitting forms of the condition a positive attitude can shorten episodes, and result in re-myelination. I have heard of this anecdotally only and can't cite any references. But MS is not PD.......

I have read that the placebo effect is stronger and more prevalent in the general population than it was thought, so maybe that is something that needs study itself. In terms of PD the effect may be less than is thought if this is true.

I am always wary of the thing about medication. I hate taking them, any of them, and even a headache pill surprises me when it works. It is also true that sometimes they simply do not work at all.... measuring these things is always going to be subjective. Sinemet I find is peculiar, as it does work, and pretty well, but there are things that work with equal measure. Being happily absorbed in doing something can send away PD symptoms, but once out of that zone, I return to my fluctuating PD self. I have seen a lot of people discuss this....

With PD hope is as important as placebo, and there is a long history of it working....... how do you separate them?

[Bob Dawson]

Originally Posted by johnt

Placebo effects have ethical consequences for this forum.

The larger the placebo effects are the more careful we need to be when posting information that conflicts with the belief that other people have in the efficacy of their actions.

John

John,
I think that PWP have to be individually strong enough to defend their placebos, because no matter what your placebo, there will be people who laugh at it or speak against it. And I think that lots of PWP have addictions or methods or tactics that are much more powerful than what we call placebo. I really do know people who could dance at a time when they could not walk, and that was neither pharma nor placebo.
So we do post information that conflicts with other people's beliefs in the efficacy of their actions.... we do that in every field in life... but a belief in a particular remedy or tactic against PD will withstand any doubters if you yourself clearly experience it as making life better for you.
But I do draw the line when someone says they know how to "cure Parkinson's". When the cure is found, this site will let you know, believe me.
There will be major fireworks. In the meantime, bring me as many placebos as you can find. I'll bring the Jack Daniels.

[johnt]

Soccertese writes: "noone expressing an honest opinion is stopping anyone from doing anything they want. it's called freedom of speech."

I support your right to free speech, but point out that being free to do something does not, in itself, mean one should do it. Also, not stopping someone from doing something is not the same as not affecting them: posts to the forum, while not stopping someone from using a placebo, may reduce the benefit they get from it.

Bob Dawson writes: "And I think that lots of PWP have addictions or methods or tactics that are much more powerful than what we call placebo."

I agree. For instance, things like dance IMO probably have true theraputic value. But that doesn't stop there being an additional placebo effect. Even medically supported drugs and procedures can have an additional placebo effect. For instance, the colour of a genuine pill can affect its efficacy [1]. And for Parkinson's: "The estimated magnitude of the placebo effect in DBS was equivalent to 39% of the magnitude of the effect of active-DBS." [2].

I don't see the placebo effect as a problem (except in the case of drug trials) but, rather, as a free, without side-effect resource. I don't see it as ever being a cure for PD, but I do see it as a way to reduce symptoms and, perhaps, if better understood, reduce the rate of progression. It's not a case of science or the placebo effect. It's a case of gaining a better scientific understanding of the placebo effect so as to get more benefit from it.

[1] http://www.wired.com/medtech/drugs/m...urrentPage=all

[2] http://www.ncbi.nlm.nih.gov/pubmed/15036165

John

[soccertese]

"placebo" affect isn't "magic", there is an underlying brain chemistry change and i would never be critical of anyone trying something that was affordable and didn't require extreme measures. i do examine with a critical eye new posters who are suggesting expensive and/or time consuming replacements to conventional meds. of course i feel better when i'm happy and/or exercise and worse when depressed, but that's true for any disease.

but when i see messages advocating the extreme pdrecovery method and read their yahoo board and how much suffering some people go thru with no benefit, when i get sales emails from theracycle about pd, when someone advocates expensive unproven treatments which promise far more than placebo benefit, i might respond. i may respond when someone posts opinion as fact.

so maybe i wasn't clear, i believe in placebo, i think it's really the wrong term, doctors write "placebo" rx's all the time cuz the patient wants a rx for their problem, psychotherapy, cranial manipulation, group therapy, i'm sure they help a lot of people, i just don't believe in accepting without comment extreme posts that i disagree with on a common sense basis.

[Bob Dawson]

Originally Posted by soccertese

i would never be critical of anyone trying something that was affordable and didn't require extreme measures. i do examine with a critical eye new posters who are suggesting expensive and/or time consuming replacements to conventional meds. .

Xtreme example. Clinic in Canada was selling injections at $1,500 each. Was just a booster shot of vitamins and whatever, with lots of "placebo" added on - lavish personal attention, testimonials from the "cured" .. i knew a man who sank his life savings in to 2 injections per week. Quacks; only good part of the story is that the quacks got busted.
Vitamins and tender loving care? Go for it!
|But|: vitamins and charade at $3,000 a week? Expose them and demand proof.

[johnt]

In the light of some recent posts in the "coconut oil?" thread, amongst others, I think it's worth bumping up this thread.

Many of the posts on this forum are about what I call "therebo", actions which may be theraputic or, alternatively, may have a placebo effect.

Unless there is good reason not to, we should be supportive of another person's therebo.

John