Parkinson's Disease Tulip


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Old 12-10-2010, 06:13 AM #11
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Heart from nocebo to placebo

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Originally Posted by reverett123 View Post

Remember that we respond to placebo at twice the normal rate. When we are given permission to improve, we do so.

Remember that when we "lose" our selves at a wood lathe or potter's wheel or the end of a joint, a miracle occurs.

There is untapped potential there, for sure.

I have always been one to think "out of the box" - its easy for me to question cultural beliefs (also known as "memes" - a sort of mind virus -a belief that gains momentum as "truth" when accepted by large groups of people). Many "truths" are relative and the underlying belief that pd is n impossible downnward spiraling disease is a meme imo..

What do you all need to be cured? Your tremors, rigidityy, balance, dexterity of course ...but would that really be eenough? the toll that the pd experience has exacted on me leaves me wanting for more than that. i desire to become deeply peaceful and courageous - with the abilitiies to RELAX into life - to find the current in tthe river ..my internal compass..to feel whole INSIDE my body.

as long as we view death as a failure tthan we'll be trapped in the nocebo effect (the negative effects of belief). so what if we view death (in its variety of forms) as achievement instead? a culmination of life experience -without winter there would be no spring! fear of failure is fear of death isn't it? ...and the irony of it all lies in the paradox...take for example the person who doesn't "need" approval of otherss is the most likely to enjoy popularrity.

John Coleman a naturopath in Australia tells his pd patients congratulations .
md
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Last edited by moondaughter; 12-10-2010 at 06:38 AM.
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Old 12-10-2010, 12:25 PM #12
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Default You've been initiated...

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Originally Posted by krugen68;724062I
wrote a long reply which I promptly lost
It's a rite of passage here at Neurotalk, congrats! Seriously, losing what you believe in your heart is your magum opus will send you over the ege and you will diligently begin to save your replies in progress. Until, you begin falling asleep in the midst of them....

-Laura
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Old 12-10-2010, 12:45 PM #13
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Default Placebo is the tip of the iceberg

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Originally Posted by reverett123 View Post
Remember that we respond to placebo at twice the normal rate. When we are given permission to improve, we do so.
Remember when you hear that diagnosis of PD that there is statistically at least a 30% chance you don't have it.

Then think of those 30% participating in clinical trials for PD....not possible?!? Google the acronym SWEDDS. It stands for Subjects Without Evidence of Dopamine Deficiency. How could a participant in a PD trial, a major one looking at levodopa's role in PD progression, known as ELLDOPA have so many participants show up with a fully loaded substantia nigra? Well that's because, oops, they had primary Dystonia (have been reading on this-grossly misdiagnosed as PD). So, well, their "lucky" day. Not fun to have, but at least your brain is not endlessly attacking itself. No, the rest of us now realize that we are really screwed. Yes, so they can't even be bothered to use PET scans in research. What kind of twisted message is that?

I am sorry but why is that the FDA drones on about safety and everyone else about reliability and statistical validity? Glad l-dopa isn't harmful to people with dystonia. Anyone who ever has the gall to question alternative treatments only need to remember this.

How can they even use Placebo as an accurate measure of anything, when you can't even scientifically identify who really has PD? Let alone tell whether one has a higher endogenous reserve of dopamine than the other. I've decided the whole research "machine" runs on very little that is scientific, so maybe that should be redressed before we can say there is a placebo problem. That is the least of their worries.
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Old 12-11-2010, 01:38 AM #14
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Default Excellent

Great work Laura. I marvel at your energy.
I add a little by the following:
We fall ill as whole people and illness is the body's way to make us adjust and adapt to onslaught. This is especially true for brain diseases. The brain is an astronomic network of billions cells and trillions of interconnections and always work in union. Every single part supports and is supported by every other part all working like a huge orchestra.
What a fresh outlook to consider PD and other brain diseases as a failure of ALL the brain to use its compensatory power.
There are immediate practical implications to this outlook. For example, examination of brains of deceased people who never showed symptoms of Alzimer in their lives, revealed extensive physical existence of the disease. These people had been able to compensate, and we should know why they succeeded while others failed.
We, the WPD community, are largely left on our own to seek and push these compensatory ways to survive while the medical establishment is very happy to pursue a one dimensional approach, 60 years out of date which brings marginal improvement to our lives for few years followed by almost certain deterioration due to side effects of the medication. It is time to change mind set.

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Originally Posted by Conductor71 View Post
I recently read an interesting approach to treating Parkinson, it did not involve any drugs, and it's a natural resource we have in long supply: compensatory mechanisms and our reserve endogenous dopamine. Imagine if researchers took a different perspective? Instead of filling the half full glass, they worked on taking the good still in the glass and working with it? I started thinking in terms of how great an improvement Imad has made...and then I thought of Ron....Max...Fiona...Nan. What they all share in common is that they seem to have tapped into their systems natural ability to heal and in the process enhanced their remaining compensatory ability to restore the balance we felt when health.

Two key articles out there are saying the same thing. Our brains are so plastic that we might be able to manipulate it at the molecular level to ease symptoms of the disease on our own for longer than we do now. The fact that we get such a long run on compensation is amazing in and of itself! It takes PD on average 15 years or longer in YO to degenerate to the point of cardinal signs, so that means the disease is fairly silent for quite some time save for the non-motor autonomic nervous system signs being named as potential biomarkers. However, researchers agree that our neurons take their largest blow within the first few years of insult or pathogenesis, so that 15 years later we present with a tremor. So, bang! right away we lose close to 80% or our neurons...yet we remain asymptomatic. This is compensatory mechanism. Our brain picks up the slack and our bodies follow suit. It is a natural symptom control, and motor symptoms emerge only after we start to lose our ability to compensate.

Further supporting the importance of compensation is the fact that those with YOPD lose many more neurons right off the cuff, in late onset less is loss. Yet, there is no correlation between amount of neuronal loss and symptom or disease severity. There is no real linear path in PD. Our symptom severity can seemingly fluctuate by the hour.

These researchers are suggesting two novel things here and suggesting a 180 in how we treat this disorder: 1) use and enhance our innate ability to compensate 2) not all of our neurons are dying; many may just be held hostage as dysfunctional. So let's focus on the good ones we have left and try to revive the others! Forget about the lost. Personally, I think this is why GDNF was so remarkable in reversing symptoms.

They are hypothesizing, and I believe that some of us are living it out now. It has been suggested by one author that at the very least to stimulate our remaining dopamine stores and to enhance function, we should look to as a foundation for all treatment a hypocaloric diet and exercise as a way to nourish compensatory ability and in regenerating any remaining healthy neurons.

A global view of Parkinson's disease pathogenesis: Implications for natural history and neuroprotection
Parkinsonism & Related Disorders

Just what are some of the compensations...

The MPTP (N-methyl-4-phenyl-1,2,3,6-tetrahydropyridine) monkey model of PD has contributed to gaining insight into compensatory mechanisms. The most relevant ones are the increase in D2-receptor binding at the striatal level, the increase in the expression and activity of encephalin, the overactivity of the subthalamic nucleus (STN) and internal globus pallidus (Gpi) and the increase in the activity of some premotor cortical regions [19].


A network dysfunction perspective on neurodegenerative diseases.

Nature. Oct 2006 Palop, et al.
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