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

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

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

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

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

I get to be...
 

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.

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.

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 :) :)