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12-10-2010, 06:13 AM | #11 | |||
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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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Smooth seas do not make skillful sailors.... Nature loves courage. “The day science begins to study non-physical phenomena, it will make more progress in one decade than in all the previous centuries of its existence.” ~ Nikola Tesla Last edited by moondaughter; 12-10-2010 at 06:38 AM. |
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"Thanks for this!" says: | imark3000 (12-11-2010) |
12-10-2010, 12:25 PM | #12 | |||
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-Laura |
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12-10-2010, 12:45 PM | #13 | |||
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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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12-11-2010, 01:38 AM | #14 | ||
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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. Quote:
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"Thanks for this!" says: | Conductor71 (12-11-2010) |
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