[Conductor71]

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.

[krugen68]

[QUOTE=Conductor71;723981]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?

I wrote a long reply which I promptly lost

Thanks for voicing so lucidly, my gut belief

[reverett123]

If we are forced to remain in life-circumstances that have generated the PD from the beginning, how can we expect improvement? If we take medication so that we can punch that time clock one more day, why should we be surprised that our condition worsens? To a large extent we feel trapped by our obligations and the lack of support. But a part of that is illusion. What if the DX had been a brain tumor? Why would change have been possible but not with PD?

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.

[moondaughter]

Originally Posted by reverett123

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

[Conductor71]

Originally Posted by reverett123

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.

[tulip girl]

My 3 maine drugs are NUTRITION, SLEEP AND EXERCISE along with a wild sense of humor and a positive attitude and an occasional margarita. They help my body stockpile dopamine. Having 20 years of PD, my husband and I rode a tendem recumbent bike across Iowa (RAGBRAI) this summer - 442 miles/over 14,000feet elevation/7 days. To do this,, we put in 1000miles of training. I credit my husband for "pushing" me to my limits. We continue to pedal together every morning but now we do it indoors on a stand. Check out "forced exercise" by Dr Jay Alberts.
TG

[krugen68]

Originally Posted by tulip girl

My 3 maine drugs are NUTRITION, SLEEP AND EXERCISE along with a wild sense of humor and a positive attitude and an occasional margarita. They help my body stockpile dopamine. Having 20 years of PD, my husband and I rode a tendem recumbent bike across Iowa (RAGBRAI) this summer - 442 miles/over 14,000feet elevation/7 days. To do this,, we put in 1000miles of training. I credit my husband for "pushing" me to my limits. We continue to pedal together every morning but now we do it indoors on a stand. Check out "forced exercise" by Dr Jay Alberts.
TG

I couldn't have pedalled 400 yards 20 years ago - envy envy

[tulip girl]

Originally Posted by krugen68

I couldn't have pedalled 400 yards 20 years ago - envy envy

Did I mention our SPLATS on the road and our roadside "divorce moments"? ROTFLOL

TG

[krugen68]

Originally Posted by tulip girl

Did I mention our SPLATS on the road and our roadside "divorce moments"? ROTFLOL

TG

......bet I know who got the blame for the steering

[Conductor71]

Yes, TG! Exactly. They give us three cardinal signs, well let nutrition, exercise, and sleep be our cardinal treatments.

How many doctors even mention exercise? I have read on many a hospital or treatment center for PD website that daily exercise is right up there on the list with your meds. In fact I went for five years with a questionable tremor (atypical ET). During the clinical wait for the disease to present itself stage, it seems unconscionable, in my mind, that any doctor would not have the good common sense to come up with the idea of getting selfish,taking better care through nutrition and exercise. They wouldn't be saying...do this in place of meds. It's saying this is the foundation for being as healthy as you can be in as it's incurable....blah blah blah. You think they might even tell you in passing that exercise is the single most potent neuroprotective that you have going, so keep or get moving.

Is it really that doctors lack "clinical evidence" that our brains do benefit from some form of regular exercise? I admire what Dr. Alberts is doing, but PWP get so desperate to replicate the forced pacing, that the message is lost. The underlying truth and message is hey that exercise does wonders for us. I think doctors need to directly address how this is really key for neuronal sprouting and any regrowth compensation. Or is it just the medical community stuck in a rut with over-emphasis on band aiding everything with drugs?