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-   -   A simple question (https://www.neurotalk.org/parkinson-s-disease/18214-simple-question.html)

Cando 04-29-2007 10:48 PM

May 1954, Kansas

rosebud 04-30-2007 11:46 AM

born: Toronto Ontario, Feb 1951....I'm a Picese (sp?) Winter

reverett123 04-30-2007 12:46 PM

A pattern after all
 
With 37 responding thus far, there is indeed a pattern. Can we figure out what it means?

Jan 4
Feb 3
Mar 1
Apr 7
May 5
June 5
July 3
Aug 1
Sept 2
Oct 3
Nov 1
Dec 2

So of we 37 over half (20) were born April thru July - 4 months or a third of the year. If births are evenly distributed over the year (anyone know?) then we should see about 12 there. The group was conceived July thru Oct of the previous year. Conceived in the heat, gestated thru cold, and born into heat. So our mothers were heat stressed at each end of the pregnancy. Presumably the first three months were dusty outdoors. The second three they stayed indoors more and increased their housedust exposure. (I am admittedly fitting the evidence to the hypothesis here. Other interpretations are welcomed.)

Someone else take a shot at this?

lou_lou 04-30-2007 01:20 PM

maybe researching the year
 
the year is much more conclusive,
perhaps those that received vaccines - containing mercury?
or perhaps the areas of the world and their drinking water?
if PD ran in the genetic codes
perhaps they had a car wreck andhad a bad injury or blow to the brain?
maybe -it is random...
more men than women have this disease, that is factual.
who would like more theories... :rolleyes:

BEMM 04-30-2007 01:50 PM

No real pattern.
 
There is not really a pattern here, out of 37 we cover every month of the year only slightly unevenly. Too bad, a pattern would have been fun.
I'm very glad you didn't get into celestial signs. They are sweet, but they're for the birds.......
How about childhood spent in: city, town, village, on farm, by sea, near forest, in mountains, near industry, near river, by lake etc. etc.? Probably no obvious pattern there either.

birte

reverett123 04-30-2007 03:24 PM

how about light deficit from shorter days?
 
The gloomy days of winter undobtedly depressed some mothers and the resulting chemicals impacted the fetus?

rosebud 04-30-2007 08:17 PM

Rick
 
I think it's time we had a little talk. As much as you are such a handsome dude when I am on DM, and as much as you are a diligent researcher with a very productive mind, and as much as you add emensly to the color and endless flow of (often ) useful information....I think your losing it. Now I will leave the "it" to be determined by you and anyone else who reads this thread, maybe it's just me-but listen, I think you need to get off the computer and possibly go outside and sit in the sunshine for a few minutes and put your brain to some task not remotley close to wondering why we all have PD. Maybe I'm out of line, but somehow I think the next new thread you post you may be asking about the methods employed by our parents to toilet train us, or if we were excessivly traumatized when we learned that our parents were having sex when we were conceived! (I know I was...and still am, so... maybe...that one would be worth exploring.) :eek: :eek: :eek: .. On second thought -maybe I should go outside and get a little fresh air too.

paula_w 04-30-2007 08:30 PM

Well that was different, but honest. I always have something to say especially when it gets this interesting. Is Rick losing it? Or, as an alternative question, I would ask - is he living a purpose driven life...Rick, join in.

paula

reverett123 04-30-2007 09:55 PM

Me?
 
:D
Whether I am losing it or not I can't say. I do take the little signature line about it being up to us seriously.

And I do feel that I contribute. The question of birth patterns is very relevant, for example.

Should I quiet down?

dianne54 04-30-2007 10:10 PM

I was born at 8 am in Chehalis, Washington on July 25,1952, is the Everett,you speak of in Wa.;)

Daffy Duck 05-01-2007 07:18 AM

The result of the survey carried out here is consistent with the findings of published research, which found that amongst people with Parkinson's Disease there was a surplus of spring births :


Neuroepidemiology [2000] 19 (4) : 177-185 (Torrey EF, Miller J, Rawlings R, Yolken RH.) Seasonal birth patterns of neurological disorders.

Existing seasonal birth studies were reviewed for multiple sclerosis (MS), Alzheimer's disease, Parkinson's disease, amyotrophic lateral sclerosis (ALS), epilepsy, cerebral palsy, congenital malformations of the central nervous system and mental retardation. Epilepsy appears to have the most consistent pattern, with an excess of births in winter and a deficit in September. MS, ALS and possibly Parkinson's disease appear to have an excess of spring births. Studies of cerebral palsy are not conclusive, although there are suggestions that there may be an excess of summer births. The findings for Alzheimer's disease, congenital malformations of the central nervous system, and mental retardation are contradictory and insufficient to draw any conclusions.

BEMM 05-01-2007 08:17 AM

Everett!!!!
 
No, no, no, for goodness's sake don't quiet down, you're keeping us going. As long as we keep searching - as long as you keep us searching - there is hope of a future. Without that hope we'd be left to despair. Don't ever give up fighting. Your research is vital, and I think it is very likely that your creative approach is going to come up with cutting edge findings and results beyond conventional PD research.
I do, however, think that is is not at all a shame that we are compelled to speculate and labor ourselves. The active approach to finding out what's wrong with us and how to right it is helping us stay alive.
But Rosebud has a point - make sure you remember to take time off to have fun and smell the roses.
Thank you for keeping us on our toes,

birte

burckle 05-01-2007 09:20 AM

An idea
 
No. Everett, there is no need to quiet down. However, I think that this board is in need of some extensive reflection. Since coming on this board (and the old BT) I have been struck by a number of things. PD is supposed to divest one of their enthusiasm, their ambition and their interest. For these reasons, I am constantly amazed at people like Everett and Ron Hutton who, in spite of having had PD for many years, are still there in the trenches seeking the key that will free us all from this malady, However, I wonder if some of this energy is misdirected. Could we turn this thread into a discussion of ways in which we might be more useful to the PD community? I have some ideas (involving publications, review papers, even a book) in which many of us can participate. After all, readers of this thread have as much, or better, command of the literature then many professional PD researchers.

What do you think?

Lloyd

BEMM 05-01-2007 10:37 AM

A good idea!
 
By all means, Lloyd. Please expand on your ideas, they sound as if they would be exciting for all of us both as interesting projects to keep us engaged, and as ultimate contributions to our cause.
Everett's probing really may lead to answers, and there is still plenty of room AND energy here for new ideas.
I'm looking forward to finding out more,

birte

reverett123 05-01-2007 02:01 PM

Now you are talking!
 
Some ideas that I have been kicking around but lack the knowledge to implement (maybe DocJohn could help)-

1) A wiki. Similar to Wikipedia but dedicated to PD. It gets kind of vague here, but the general idea is that readers could post addendums or corrections as appropriate and the knowledge base would grow in a self-correcting organic manner.

2) A parallel blogspace for discussion of the wiki. Actually this could be done with dedicated threads in vBulletin.

3) Education of patients. We tend to be pretty intelligent folks but if we are going to be considering things like genetics and the inner workings of mitochondria we need some basic knowledge. Perhaps the wiki could incorporate this by means of a handful of links to unusually good websites. But more than a handful and it kind of fizzles away into ineffectiveness. And a tutorial on how to use Medline would be goood too.

4) Education of scientists and doctors. After number 3, who better to observe PD than us? By then we could speak their language.

5) The quickest route to a cure is to find the cause(s). Examination of the various possibilities and how they might interact might lead to something.

One thing that keeps me plugging is to remind myself that we are a unique PD "generation". We are the first to: know that the brain can be repaired; have access to the Net and thus communicate with others to compare notes; and have access to Medline and similar resources.

The sheer volume of the data that has been collected and the flood of new stuff every day makes it impossible for anyone - especially if they are already busy with patients or a project- to ever hope to keep up to date. A group with time on their hands have a better chance if they know what they are doing.

We aren't scientists (apologies to those who are) but there is a certain backhanded advantage in that. Scientists are specialists. That has power but it also is a weakness. If a neurologist and an endocrinologist and an immunologist never see what the other is doing and aren't able to understand it when they do, there's a good chance that things are going to be overlooked

We are generalists. We don't know a lot about one thing but we do know a little about a lot of things. The advantage is that we might spot patterns that a specialist would not. So the day might come when we looked at the wiki and said "It's obvious that...."

OK, I'm going fishing :D

rosebud 05-01-2007 03:04 PM

Okay....The tribe has spoken
 
Rick gets to stay on the island, but has to go fishing occasionally for mental health reasons. Paula will be our advocacy voice, Burkle will search out new avenues in which to invest our extensive variety of talent in such a way as to reach the uninformed, Birte will be the voice of balance and reason, Daffy will continue to point out research material supporting the things that the rest of us can't believe anyone has actually done research on and the rest of you can gather firewood, develop new insights into our mutual condition by joining the meditation group or peel carrots for our first annual carrot festival and feast (as I'm sure there is a study published somewhere promoting the use of carrots as a cure for PD) For the truly burnt out or those who are "off" you can choose between watching grass grow or paint dry or grow a moustache.
As for me....well I'm going to the garden to eat worms!:p seeyalater

reverett123 05-01-2007 03:24 PM

I get to be...
 
...Gilligan!

annefrobert 05-01-2007 05:10 PM

month-of-birth patterns
 
Seasonality of birth has been studied and reported in several illnesses, either linked with allergy and pollinisation , or in inflammatory/autoimmune diseases as Diabetis 1, childhood inflammatory bowel disease, crohn 's disease, and, links to month of birth have been found more particularly in multiple sclerosis, narcolepsy, schizophrenia,ALS and........possibly in PD.

Existing seasonal birth studies were reviewed for multiple sclerosis (MS), Alzheimer's disease, Parkinson's disease, amyotrophic lateral sclerosis (ALS), epilepsy, cerebral palsy, congenital malformations of the central nervous system and mental retardation. Epilepsy appears to have the most consistent pattern, with an excess of births in winter and a deficit in September. MS, ALS and possibly Parkinson's disease appear to have an excess of spring births. Studies of cerebral palsy are not conclusive, although there are suggestions that there may be an excess of summer births. The findings for Alzheimer's disease, congenital malformations of the central nervous system, and mental retardation are contradictory and insufficient to draw any conclusions.
Seasonal Birth Patterns of Neurological Disorders
E. Fuller Torreya, Judy Millera, Robert Rawlingsb, Robert H. Yolkenc
Vol. 19, No. 4, 2000



But, first, such month-of-birth patterns require very large epidemiologic enquiries to be assessed and confirmed.
Then, a birth seasonality in the development of an illness may suggest the presence of environmental factors acting in combination with genetic factors during the fetal or perinatal period, in terms of an autoimmune process ....
a wide field of research that is not that new to you, Rick, am I right?

Anyhow, please add my own birthday in late May to your personal serial test..:winky:

Anne.

annefrobert 05-01-2007 05:13 PM

month-of-birth pattern in Parkinson's Disease
 
Seasonality of birth has been studied and reported in several illnesses, either linked with allergy and pollinisation , or in inflammatory/autoimmune diseases as Diabetis 1, childhood inflammatory bowel disease, crohn 's disease, and, links to month of birth have been found more particularly in multiple sclerosis, narcolepsy, schizophrenia,ALS and........possibly in PD.

Existing seasonal birth studies were reviewed for multiple sclerosis (MS), Alzheimer's disease, Parkinson's disease, amyotrophic lateral sclerosis (ALS), epilepsy, cerebral palsy, congenital malformations of the central nervous system and mental retardation. Epilepsy appears to have the most consistent pattern, with an excess of births in winter and a deficit in September. MS, ALS and possibly Parkinson's disease appear to have an excess of spring births. Studies of cerebral palsy are not conclusive, although there are suggestions that there may be an excess of summer births. The findings for Alzheimer's disease, congenital malformations of the central nervous system, and mental retardation are contradictory and insufficient to draw any conclusions.
Seasonal Birth Patterns of Neurological Disorders
E. Fuller Torreya, Judy Millera, Robert Rawlingsb, Robert H. Yolkenc
Vol. 19, No. 4, 2000

But, first, such month-of-birth patterns require very large epidemiologic enquiries to be assessed and confirmed.
Then, a birth seasonality in the development of an illness may suggest the presence of environmental factors acting in combination with genetic factors during the fetal or perinatal period, in terms of an inflammatory/autoimmune process ....
a wide field of research that is not that new to you, Rick, am I right?

BTW, please add my own birthday in late May to your personal serial test..:winky:

Anne.

reverett123 05-01-2007 05:52 PM

hi anne...
 
...and welcome back.
:D Anne is teasing me a little since we have had similar discussions of "varying agreement" along these lines.

But the importance of what the fetus encounters is startling. You wouldn't think that your own mother's stress or depression or infection, etc would mark you for life, but that is exactly what happens. Heck, the stress effect is even passed to the next generation! It blurs the line between genetics and environment. And it has a big role in PD.

So, the amount of sunlight our mom's had might be relevant. If only we had another 500,000 responses :) :)

Ronhutton 05-02-2007 01:13 AM

Birth
 
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

burckle 05-03-2007 09:50 AM

Some ideas
 
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

annefrobert 05-04-2007 05:08 PM

PD and high BP drugs: one train may hide another train
 
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 :winky: ), 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.

annefrobert 05-04-2007 06:53 PM

some ideas
 
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

reverett123 05-04-2007 10:33 PM

Back from Nashville...
 
...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

reverett123 01-26-2011 02:11 PM

the software makes me have ten characters here

pegleg 01-26-2011 02:16 PM

Can I still play?
 
I'm VERY late joining this thread - but I was born Fall - November.

(and Happy Birthday yesterday, Paula!)
Peg


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