Sorry I'm late to join this one, but I'm not a Spring baby, born 26th October in the UK.
However, when I see which way this thread is going, I had to make time.
We have a real blend of talents here, and united, we make a formidable force. There is every possibility that we could unearth the lead to a cure, or at least a treatment without so many side effects.
There are so many leads. For example, I have raised previously the cases of PDers who take high blood pressure drugs, not requiring any PD meds. I was at a PD dinner in London last week, and there were 2 people out of 8 on our table, who had been diagnosed with PD, years ago, yet neither had ever needed any PD meds. Both were taking high BP drugs. How many more are there who have never been diagnosed but would have developed PD with the hypertension drugs? THere is a paper from Purdue UNiversity in J. Neuroscience, published on April 17th 2006, that showed hypertension drugs reversed cell death. Other examples are the part played by the BBB, and so on.
We have this unique blend of doctors, scientists, generalists with a wide spectrum of general knowledge, and united by our illness. Lets see what we can achieve.
Ron

Activity on this board reminds me a great deal of activity on the Stock Market. A stock is put "in play", there is a great deal of buying and selling activity, it rises and then falls back to near its original level. On this board, an idea is put "in play", it attracts interest, eventually runs "out of gas" and disappears into the archives never to be resurected.

Could we change the culture of this board?

In a previous post I had indicated that if we are to achieve any kind of recognition from the (medical) PD community we need a track record. By this I mean we need to have members of our community publish papers in peer reviewed journals. This is not an entirely off beat idea. Some of you have spent an enormous amount of time collecting PD literature. Why not assemble this in a large review paper? Indeed, it could be published in a series of papers, since the literature on PD is so vast and varied.

Similarly, it would be helpful if some of us had a track record on securing research funding. Again, not an offbeat idea. I have a colleague who set up a research lab in his basement which was funded for a number of years by the National Science Foundation. Another colleague is in the Geology Department of his University but is funded by NIH on the strength of an idea he had. If you have a viable research idea and lack the laboratory or other logistical resources to carry it out you can ally yourself with someone who does have the University resources. This has been one of the beauties of the Internet. In some cases, I have never met my co-authors. Our collaborations has been entirely through the internet. I have no idea of their lab resources and they have none of mine.

Finally, I have been thinking of ways to give our malady greater visibility...and I've come up with the idea of a book. What I have in mind is a book of vignettes written by people with Parkinson's, their care givers, even their doctors. I got this idea by reading posts from people like Rosebud, Steffi, Paula and ol'cs. In reading their posts, I have often thought that they deserve, and this malady deserves, a wider audience. It is filled with hope, anger, setbacks, humour, all that we should share with a non-pD audience. Some of the vignettes already exist in the archive but others could be gleaned from the PD community.

What do you think? Remember, I look upon this as something more then stock pick that is being put "in play".

All the best,

Lloyd

Hello Ron,

........"One train may hide another train..."

When a molecule is prescribed, our attention may be only focused upon the very mechanisms that will lead to positive effects and relief of the pain or sorrow we have been complaining of and it has been indicated for. But however, this active molecule has many other biological effects, usually known and evaluated long before to get the FDA or our european equivalent organisms approvals. And when some of these effects may occur and impair our lives besides the main positive one, as we all know, it may happen too, at times, that their mechanisms fit in a positive way for other health problems we have at same time.
A physician is trained to know all about these good or negative results and chooses the best tablets that will combine effects if they are required.....and gives explanations to his patient about how and why he has made his choice of such a molecule ....

"High BP drugs" ...so much to say...it is hard to know which therapeutic class to start with....
Angiotensin II type 1 receptor blockers ? Angiotensin-converting enzyme (ACE) inhibitors? Calcium channel blockers? Diuretics? Beta-blockers ? Sympathetic nerve inhibitors? Vasodilatators?

As Beta-blockers and Angiotensin II type 1 receptor blockers are very frequently prescribed (and as I have mcuh more ideas about their potential action in PD process than about the other drugs ), here comes my answer, at least a partial one, to your question.


Beta-blockers

The people you are talking about have not been given any anti-parkinsonian drugs.
This evokes a very mild type of illness with A very slow evolution and, at least statistically, more a form with shivering and without disability.

If I am right, then Beta-blockers may have lessened the tremor enough not to be visible to others....

This is my first -very simple -idea.
Below is a much more complex one, take it as a theorical exercise upon the data you've given.


Angiotensin type-1 receptor (AT1R) blockers (ARBs)

In Parkinson's disease, the massive neuronal cell death occurs as a consequence of an inflammatory response, where activated microglia and their cytotoxic agents play a crucial pathological role.
The immune pattern of PD is the one of a Th1 reaction

Angiotensin type-1 receptor (AT1R) blockers (ARBs)

1/ potentially attenuate lipopolysaccharide-induced neuroinflammation and reduces neuronal death by a mechanism dependent of peroxisome proliferator-activated receptor gamma (PPAR)activation.

2/ may regulate the nitrosative stress-induced apoptotic cell death in contributing to regulated expression of inducible nitric oxide synthase (iNOS) and regulated production of nitric oxide (NO)

3/ may modulate the immune system shift from Th1 inflammatory/autoimmune reactions to Th2 through VDR (vit D nuclear Receptor), PPAR and CCR2b C-C (chemokine receptor type 2)

4/ may cause inhibition of oxidative stress activation as Angiotensin II activates (via type 1 receptors) NAD(P)H-dependent oxidases, which are a major source of superoxide.


In hope for complementary data or contradictory posts to come.

Anne.

Soros offers open access to science papers

Declan Butler, Nature

George Soros, the Hungarian-born financier and philanthropist, is backing a new effort to provide free and unrestricted access to scientific and other academic literature.

Soros's Open Society Institute (OSI) will launch the new initiative in Budapest on 14 February, pledging US$3 million in grants over three years to support free electronic article repositories and 'alternative' journals committed to open access.

Peter Suber, a philosopher at Earlham College in Richmond, Indiana, and one of the architects of the 'Budapest Open Access Initiative', says that this sum will go a long way. He notes that electronic repositories are not expensive to set up, and that the open-source software required to run such repositories is already freely available on the Internet.

But Suber and others involved in the initiative concede that further funding will ultimately be required, and that their broader aim is to create a "domino effect" by convincing other funders and research institutions to become involved.

The initiative is publicly supported by around 300 individuals, including the provosts of the California Institute of Technology and the University of Kansas. The 20 organizations listed as supporters include the Public Library of Science, the University of Illinois at Urbana-Champaign and the University of Missouri-Columbia.

The initiative shares some of its objectives with the Public Library of Science, which last year sought to organize a researchers' boycott of journals that refused to cooperate with its campaign for free access to scientific literature. But instead of seeking to influence publishers, the Budapest initiative will attempt to win support for open-access publishing from within the academic community.

Research institutions and funding agencies that sign up commit themselves to making policy changes, such as creating local open-access electronic repositories, and making it compulsory for grant recipients to deposit their papers there. Individual signatories agree to deposit their research in freely available electronic repositories, and to support alternative journals as authors, editors and referees.

"Only time will tell if the impact of the OSI will be large or small," says Suber. "We only need enough money to change the business model of enough scholarly resources to give momentum to this better way. The money already in the system is more than enough to pay for open access," he adds.


http://www.nature.com/nature/debates...les/soros.html

...and catching up:

1: I think Burckle is right. We have the ability to do something here but are in danger of it slipping away. So, what might we do? One possibility might be a permanent "Parkinson's File" modeled after the "Gluten File" in the Celiac Disease forum. A fine piece of work. Perhaps we could ask its originator to give us a short "talk" on how she assembled it and so on? That doesn't sound too intimidating and it could serve as a shakedown for group practice.

2: Anne, try again on the ACE inhibitor explanation. It's flying too high over our heads.

For those who don't know, Anne is both French and an MD with PD. As a result, she has to go through several translation gyrations and sometimes forgets who her audience is. I know this because I have been helping her compile and translate a body of work that is almost mind-boggling with the goal of publication. I am convinced that she knows more about PD than anyone on the planet.

3: In addition to the BP drugs, there are the anecdotes of symptomatic relief from antibiotics - particularly the tetracyclines. Anyone gone through a course of such lately?

4: The Soros effort is welcomed. For those who don't know, there is an element who would like to shut down Medline and force us to pay even for abstracts. Keep in mind that almost all research has some government money (that's OUR money) involved even if it is simply that the scientist got his education from a public grant. Why should I pay twice just to line the pockets of one of the companies that feed like vultures while we suffer?

-Rick

the software makes me have ten characters here

I'm VERY late joining this thread - but I was born Fall - November.

(and Happy Birthday yesterday, Paula!)
Peg