MD - I agree with your overall premise.

I think PD is not monolithic; that it is a combination of different things going wrong in our bodies - and minds - not necessarily all dopamine related, and not the same in everyone. Right now, we are treating this variable disease with a sledge hammer - l-dopa - with no nuance at all. I believe what we learn from the PPMI study will hopefully shed light on the nuances of the disease; how what we believe is a PD diagnosis in the early stages actually changes our biology over time. Until then, the research is scattershot and blind. We're wasting a lot of time and money trying to cure something we don't understand.

And I don't believe in a single "cure" for PD; it seems fantastical to me that there is one switch (cell, gene, protein) in my body that can be flipped and I'd be fine. But that is counter to a lot of what many really smart scientists believe.

I'm really afraid of the side effects of the drugs I take, especially as I begin to live well into a dozen years with the disease. My doctor calls me "undermedicated," - but I can find no reason to push more chemicals into my body if all they are doing is "masking" symptoms, not halting progression and possibly causing me more problems than they are fixing. How I manage my disease is currently a crapshoot with no real answers. Have I managed to avoid dyskinesias for 12 years because of a judicial use of l-dopa or do I suffer from something different from "Parkinson's" entirely? I'd like to know what I am treating before I treat it - especially with harsh drug compounds or brain surgery.

Until I know more, all I can do is try to make myself feel as good as possible - with as few drugs as possible.

I guess I'm just curious about what the hell is going on in my body. I, like you, would rather think in terms of global consciousness, my qi flowing smoothly, my chakras firing on all cylinders, and the benefits of healthy living (with a few good bottles of wine and maybe a margarita - or two or three). That is all a good prescription for a better life.

That's why I've never done a clinical trial for anything that claims to be disease-modifying, is invasive, or is chemically based. And I won't until we know more about just exactly what it is that we are trying to modify (hence my love for PPMI).

Michael J Fox wrote a book about, and did an ABC television special about, "happiness." He reported feeling better, his symptoms better, while in the Himalayan kingdom of Bhutan at 8000 ft elevation, a place and culture that puts a premium on happiness. Why not put some research money there? Is it the value of travel, or elevation, or happiness that wrought such a change? Why isn't this kind of research just as valuable as the next new pill?

I think we have to be open to all questions to find the answers we are seeking. But from either the Western or Eastern perspective, you can bet we will find them only when we look inside.

YESSSS again!!!

Reading your other thread http://neurotalk.psychcentral.com/thread159340.html I feel like a spectacle...a face without a name. Applying a business model to healing based on competition is somehow dehumanizing- i digress....

The newtonian model in science is limited to a linear perspective deeply rooted in a premise of competition based on Darwins theory of natural selection. This created a cultural fundamental bias instilling a belief that war is "natural" therefore competition is a basic and necessary way of life. we have been coopted by the "religion" of this kind of thinking only to find out that much of it too is dogma!

Science now is mmaking nnew findings that change these assumptions - science is discovering that we have human origins that predate what we previously thought to be true and that cooperation not competition alone is necessary for survival.
This concept is presented by Gregg Braden in his book Deep Truth...

we think in linear terms of hiearchy..does the immune system reign supreme? or is it the pineal gland that ultimately governs ...or even perhaps the gastrointestinal system that determines how well we live and die. But. consider a stained glass window....changing the shape of one piece cann potentially alter the whole window- and that is only a 3 dimensional object. Applying this understanding to a multidimensiional dynamic physiology and suddenly outcomes become unpredictable - iit is so very arrogant to believe that we have so much control IMHO. This attitude is in fact.....dangerous! war on parkinsons???now theres an oxymoron.

How can you cure a disease that reflects thhe pathos of the outdated flight and fight response itself with a competitive oriented approach? - we are like the canaries in the c oal mine warning our race thatt we need to evolve from this old brain or die! haven't we figured out yet that war is outdated?

maybe a good economist could lend insight in how to heal our condition...

how about thatt marguerita girlfriend! we'd have a great time!
md

MD - I went to an acupuncturist several times a few years ago, but had to stop because I couldn't afford it. She was also schooled in other forms of "non-traditional" medicine, and we had long discussions about how that tradition is non-linear and wholly inclusive. It took awhile before I could even begin to change the way I think about healing - my brain is so mired in Western thought patterns. I still don't entirely get it.

But it somehow seems right to me, especially since my PD dx 12 years ago. The way I experience PD in my body did not correspond with anything that was written about the disease, even though I had text book symptoms. I have been on a quest to figure out those contradictions, and explain it to anyone who will listen, ever since. I've found that MJFF listens best.

I figure that if it took me a long time to even try to begin thinking in a different way about healing (and I wanted to), it would take the entire Western medical establishment much longer - because they really don't want to change. They will continue to think their way for a very long time. And we have to work with it while trying to change it.

There is only so much a large foundation like MJFF can do to explode old ways and still raise money. They've had to be innovative within a framework - and just making those changes to the status quo - things like making study data public, sharing information, and researchers talking to each other across disciplines - are seen as rule-breaking, ground-shaking changes. They've also made end-runs around the glacial NIH grant making process. The results are positive for us, and I think have challenged a medical system based on competitive newtonian science.

I think the whole PD behemoth has pretty much come to realize there will be no magic bullet for many years - maybe never; that it is much more complicated than they thought; and that more attention needs to be paid to the general health and well being of those living with PD right now.

I drove through eastern Oregon last month - I should have stopped by for that margarita!

the average person does not go about his day thinking he is going to cure a disease. the average person has a narrow view of life - meaning that he is thinking about his day, not a cure for a major illness. He may or may not enjoy his job. his worries extend to bills , family, extra curricular activities if his children. All the hype in the world isn't going to cure this illness. no one really cares, we all have to die and and baby boomers are all getting sick. as long as there is no accountability or an appropriate "push" put on this illness, there will be no cure. the cells are dying. get over the debate and work on what we know.

http://www.ft.com/intl/cms/s/0/b1376...44feab49a.html

Paula - I guess I would say that the amount of what we don't know trumps what we know. We need research and movement on both fronts. We move forward with stem cells, but, if they do fail, IF, then we also are continuing research on the bigger picture.

A long , long time ago I asked my father why we were spending billions of $$ to go into space when children starve here on our home planet. He answered, because achieving new accomplishments, doing the impossible propels us forward - and I realized that the intangible that holds infinite possibilities is worth striving for.

so yes, i get it. the MJFF is in a unique and challenging position to not be swayed by bias, to shoulder the huge responsibility of accomplishing their mission..and don't get me wrong, i believe their intent to be noble.

like Paula points out however, we already have technology....good technology...some of which (i.e. the integrative therapies mentioned previously)may not be as "profitable" to the business man because of its basic application that can't be controlled as it is fueled by source that can't be monopolized. Sort of like nuclear power vs solar...

nothing more powerful than an idea whose time has come!!
md

[QUOTE=moondaughter;816448]A long , long time ago I asked my father why we were spending billions of $$ to go into space when children starve here on our home planet. He answered, because achieving new accomplishments, doing the impossible propels us forward - and I realized that the intangible that holds infinite possibilities is worth striving for.




or not.....romantic notions are susceptible to agendas by those who have power that is not always used for the best and highest good...

md

[QUOTE=moondaughter;816631]Life is complicated. I see a lot more gray than black and white - and it's not because I live in the Pacific Northwest!

Quoting Carey: What do you think about gene transfers and trophic factors?
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I think gene therapy and trophic factors are two of the most promising treatments to come along in a long, long time. The delivery method of both, however, is the question - which way is best? And both could be in one trial design (i.e., the genetic alteration could initiate production of the growth factors).

Another question that I would like answered is why can we not have ptotocol allowing faster approval for new treatments already approved and USED successfully in other countries (e.g. Europe) ? Take the Neupro patch - last word I had was Swarz-HCB* was throwing the towel in for FDA approval. While the patch was used here before being pulled), a lot of PWP had a successful experience. And another therapy is duodopa - that's the treatment similar to an insulin pump. It has been used successfully in Europe for years, but still not approved here.

Why not allow people with advanced PD symptoms and major quality of life issues sign to waive legal rights and use proven therapies at patients' own risk??

*http://www.ucb.presscentre.com/News/...gotine-f8.aspx

(sorry if this has already been asked). I cannot sit at the computer for very long periods due to pain)

"They've had to be innovative within a framework - and just making those changes to the status quo - things like making study data public, sharing information, and researchers talking to each other across disciplines - are seen as rule-breaking, ground-shaking changes."


Carey - This indeed is a welcome fundamental change and informs us of what we must do for ourselves as well. For example, my dentist came to my upper cervical chiropractors office to do a series of interactive adjustments...the dentist to my orthotic appliance and the chiro to my neck....that night i slept really well and woke up breathing better amongst other improvements to balance and stamina. the two docs were a synergistic combination. Next month my massage therapist will come to the dentist office to combine osteopathic muscle therapy and orthotic appliance adjustments.

Only through combining therapies and diagnostic venues will we find answers which is reflective of a cooperative model. No man or disease is an island...
MD