My 2 cents worth..I can see Gregs point..It would certianly be great to finally find out just what it is that causes pd..and in that light it would be great as well to find out how to atleast stop the progression, which is atleast a step in the right direction..Having said that, we havent got the answers to those questions as of yet, so we have to take whatever we can get to make it through this journey, because something is better than nothing I suppose..time is of essence, and the clock is ticking away while we wait..and we wait..and we wait...............................

...don't sell yourself short either. You have a unique viewpoint because of your unique background and you just might see something that I wouldn't. That is true for each of us. A research group of totally "unqualified" people who were determined to educate themselves and whose future depended on it would be unlike anything ever seen before because it wasn't possible before.

Those of you who did library research in your college days, how long would you have had to work to produce that mega mess I just posted on bacterial toxins? A year? Two? I did it in two weeks combined with a vacation at Ron Hutton's lovely home with my feet up. In other words, I wasn't working that hard. I remember when I was at university going into the stacks and searching endlessly for hours to turn up what now takes sixty seconds! This is a level of power that no group of patients ever had!

If a dedicated group could be organized and trained to mine data from their unique perspective, nobody knows what would happen. But, if done right, it should be possible to produce something worth putting in front of the "real" researchers and saying "We have identified 36 points spread across seven disciplines that have not been given attention. We have analyzed these 36 in terms of potential benefit to cost of investigation and ranked them accordingly." And if no one is interested then do it at a press conference called in front of one of the big foundations

But I digress. Blame the drugs.

Back to the point, I would like to hear from anyone who has a background or strong inclination that would lend itself to something like this. I do harbor secret plans along these lines. In fact, I went so far as to register "parkinsonsonline.com" and "dot.org" for that very reason. It's nothing but a gleam in my eye right now but many things have begun that way. If anyone is interested in seriously considering such an approach, PM me. Who knows where it will lead?

Ok i want to respond to Thelma more. Thelma in no way would i want you to leave this forum because you are a link to other forums. In no way is it meant to exclude other conditions and we know it would be good to join together.

It's physical energy and too few people that is the problem. We've been asking for more help periodically all along and posted numerous times about the GDNF debacle.

But we are sick - we go to conferences and help one person out of freezes as she crosses the street in New York City, and as hotel roommates put pills into another's mouth because the shoulders and arms were frozen.

You are proving my point friend. Parkinson's is vicious and you are asking too much from one group.

paula

Like MIchael and Rick and others, I have now spent years I guess studying the literature and corresponding with research groups. I am one of those fortunate to have scientific knowledge and degrees in chemistry, B.Sc wiith
1st class honours, M.Sc and a Ph.D.
The more I see, the more I become convinced that PD is simply that we have a defective blood brain barrier (BBB). You can explain every fact with this scenario. First, Dutch researchers have confirmed that Parkies have a leaky or defective BBB.
http://www3.interscience.wiley.com/c...73259/ABSTRACT
In a normal person, the BBB is tight and stops toxins getting into the brain. THe toxins circulate harmlessly in the bloodstream. In our case we get leakage into the brain, and damage to the neurons.
Question, Why do parkies vary so much in their symptoms?
Because the defective BBB is on a score of 10, where 10 is perfect, say 6 in one Parkie, and 4 in another.

Question, Why is PD gemerally more in older people 55 years and above.
Because the BBB gets leakier and less efficient with age.
http://hcd2.bupa.co.uk/fact_sheets/p...ns_disease.pdf

Question,Why do some people who have exposure to pesticides, or other toxins get PD, whilst the man alongside him does not?
Again, because the man who gets PD has a defective BBB.
Additionally, pesticides increase the porosity of the BBB
Sinha and Shukla Hum Exp Toxicol.2003; 22: 647-652

Question, A number of us have found curcumin helps to ease our symptoms, Why?
Because curcumin is known to close the pores on the BBB.
http://en.wikipedia.org/wiki/Blood-brain_barrier

Question, Why does stress make our symptons worse?
Because stress has been shown to widen the porosity of the BBB.
http://www.sciencenews.org/pages/pdf...4/15024-10.pdf

Question, What other chemicals cause our symptoms to worsen?
Nitric oxide, carbon monoxide and organic phosphates
Yes you have guessed it, they all cause an increase in the porosity of the BBB
http://www.ncbi.nlm.nih.gov/entrez/q...&dopt=Abstract

http://www.cbc.ca/consumers/market/f.../carbmono.html

http://www.foresight-preconception.o...oklet_agro.htm

Are there other beneficial compounds which help reduce PD symptons, which also tighten the BBB?
Yes for example methylprednisolone.
http://bjo.bmj.com/cgi/collection/Mu...halmol&page=29
“Oral methylprednisolone improved symptoms and disability resulting from attacks ... Parkinson's disease.”

In fact, a similar mechanism has been proposed for MS
“We know that when a person with MS has an exacerbation of symptoms, the blood-brain barrier near the lesions breaks down, leaving the surrounding brain vulnerable to excitotoxin entry from the blood.”
http://www.althealth.co.uk/help_and_...ple_sclerosis4

Everything I have found that widens pores of the bBB also makes our symptons worse. Everything that tightens the pores improves our symptons.
I have found no exceptions, although there must surely be some.

So we need a new direction of research, to find treatments which repair the leaks in the BBB. Sounds easier than suffering a DBS?
The reseach on pesticide damage, bacteria damage etc is still relevant. It simply means we are more badly hit than those lucky souls whose BBB stops all aggresors trying to get in.
Ron

RON, RON, RON, RON, Ron, Ron,

That makes so much sense. My mouth hangs open. Couple that with your nasal delivery system and the right poly-peptide and........you finish this statement.

In the meantime, I'm going to buy a tighter hat and some nose plugs (that's a joke)

I really think you've got something there, Ron. It is just too simple to see. Every one of my "reasons" for Pd are adddressed by this as well. That is not to say that any of our myriad of reasons are incorrect, but it does tell us that they are avoidable to a great extent.

Have you posed this to any researchers yet?

You don't happen to know Prof. Illingworth at the University of Leeds do you?

michael b.

The answers may well come from here. Michael is right, your theory makes perfect sense, Ron. And your answer is so simple that all of us can nod with understanding.
The remedies suggested, Methylprednisolone for one, are already available, but unfortunately not as harmlesss as we would wish. Methylprednisolone, is "a corticosteroid, similar to a natural hormone produced by your adrenal glands. It is often used to replace this chemical when your body does not make enough of it. It relieves inflammation (swelling, heat, redness, and pain) and is used to treat certain forms of arthritis; skin, blood, kidney, eye, thyroid, and intestinal disorders (e.g., colitis); severe allergies; and asthma. Methylprednisolone is also used to treat certain types of cancer."
Steroids come with their own problems, but if they really helped relieve PD symptoms, or arrested progression, it would be a small price to pay.
And Thelma, you are right, we are not the only ones in this predicament. Though PD, ALS, MD, Huntington's etc are separate illnesses, they are also all of them closely related, and we would do well to work together.

Hope and optimism are in order,

birte

I have a warm feeling about it.

Paula

....A group of innocent Parkies, a Friday night....the Twilight Zone...
(Ron, did the show make it to the UK? If not my joke is wasted so ignore it )

I have to vote for LPS and stress, both prenatal and adult, as the centerpiece with secondary factors in orbit around them.

For starters, both trigger inflammation which then opens not only the BBB but also the intestinal wall which increases the blood's load of not only toxins but lectins as well. The latter are food proteins that resemble our own brain matter just enough to provoke our immune system to make mistakes.

Then there is the matter of the fact that the first damage (or at least Lewy bodies) show up in the nose (olfactory bulb) and stomach wall. Since LPS is the main component of house dust, that could explain the nose and maybe the stomach too.

Then there is the seemingly high rate of childhood constipation among PWP. The prenatal exposures to both can account for that. LPS toxins do direct damage to the enteric nervous system and prenatal stress can screw up the establishment of the needed microflora. Once again toxins move into the bloodstream and the BBB is compromised.

And these are just the most clearcut examples of a dozen similar factors, all interacting and causing problems. But the thing that is the endpoint in the advanced stages that rob us of our lives is the activation of the brain's defense systems (the microglia) and their inability to shut down. All the semantic confusion and complexity is a blessing in a way because it makes us focus on the things we can do something about. In all the above, inflammation is the process at work. We can't even list the causes, but we can identify the process that is loading our bloodstream with damaging molecules, opening up the epithelia that line the gut and the capillaries in the brain and activating the immune response. And anti-inflammatory strategies from curcumin and green tea to aspirin and nasty things the doctor gives you are plentiful and well researched.

India has one of the lowest rates of PD in the world despite their poverty, etc. They also have a cuisine built around some very potent anti-inflammatory spices such as turmeric/curcumin.

What other factors could explain their good fortune? I have tried but can't come up with even one candidate.

In rereading my post above, I suddenly focussed on

<Then there is the matter of the fact that the first damage (or at least Lewy bodies) show up in the nose (olfactory bulb) and stomach wall. Since LPS is the main component of house dust, that could explain the nose and maybe the stomach too.>

in the context of our old discussions about the nose as a way to bypass the BBB. If the LPS content of house dust is a factor, then we have the possibity of a steady seapage along the axons from the olfactory bulb into the brain itself.

The obvious question of why, then, doesn't everyone get PD could be explained by the fact that people exposed to LPS prenatally have an alterred sensitivity to adult exposure (pretty well established).

And, again, curcumin comes to the rescue because it is one of the few things that counter the effects of LPS, thus explaining the Indian paradox.

Which is why we keep screwing it up for the next generation...the gene pool. Yes I can see the end of man....oops lighten up... or is it get serious - ?

Regarding Rick's post -
Could use in parenthesis how the vocabulary connects - the language is better than a journal but i could connect a lot more of it [maybe, lol] - if i knew what more words meant. You''ll know when to stop writing it when we understand it....simple But what you are trying to explain is quite complex and much explaining needs to come - with references.

We edit each other to death in Pipeline LOL> But most won't read what they can't understand. I'm up against a college librarian and author, a prinicpal of the year for her state, and to round it off nicely, a journalist, when writing with Pipeline....It's like being in English class - very similar.


thank you!
paula