There were times, now disposed, when the taste of the hunt would arouse the roaring spirit, driving me head-long into the wind sniffing out the treasure that was sure to be my tenacity's prize. Like the sow's passsionate quest to unearth the alluring truffle, my thirst for knowledge was more powerf'ul than the need for sleep and was not thwarted by the hunger-driven stomach. Just another bite of knowledge or a tid bit of understanding before I retired and dreamed of the ultimate find.

My roar has dwindled to a whimper, and my passion's flame would do well to cover the head of a match. How will I again catch the taste of the hunt and be driven by its teasing? I will stoke the ashen embers until they spark to life and fan the flame until it again burns bright. Then I will eat the knowledge that others have gleaned until I salivate for one morsel more. Standing then, I will stretch my sinews back to life and join with others to claim my right to Taste the Hunt until that last puzzle piece is placed.

michael b.

Sometimes "flowery language" is exactly what's called for and this is one. All of us are on a descending path (at least for now). I ride in full cry in search of the grail for all of us, but for how long I don't know. When I fall silent someone must take my place just as I have stepped in where others have stood. We all have an obligation and a debt of honor to do what we can. There are speechless ghosts who were once warriors, watching from the shadows and who once struggled on our behalf. I fear I will someday join them and hope someone will be there to take my place. All you lurking "newbies" pay attention. Find a way to contribute and do it. Take part here. Write a letter to your local paper. Educate yourself and then dive into the databases and see if you can see something no one has seen. Support those who are doing. Do yourself. Heck, storm the White House gates. Whatever you can contribute, do so.

Now that I got that out of my system, let me end on a more hopeful note. Each of us has different capabilities. Among those are differences in intelligence and education, although as a group we are above the norm there. But those of us with those advantages, especially if we have a scientific/technical bent, have a special obligation and a special opportunity simply because of the era we find ourselves in. Never before has a group like us had the access to the information we have. From our keyboards we can reach into pools of knowledge unimaginable just five years ago.

That gives us a unique opportunity. Scientists are specialists. There is both power and weakness there. It gives one intellectual tunnel vision. The various disciplines seldom talk to one another in a formal way and the individuals are as busy as everyone else. As a result, cross disciplinary collaboration is rare.

We, however, are generalists. There is both power and weakness there, too. With a little effort to educate ourselves, we have the ability to take a big picture approach and use those databases and libraries in a new way. We don't have laboratories and we can only experiment on ourselves. But we CAN look across the disciplines in search of patterns that are only visible from that vantage point.

Give me a hundred such Parkies and I think a cure could be found.

End of rant. For now.

statistics are tricky. i'm cuurious about the methods used to determine average lifespan. mainly, infant and child death, if a quarter of the people born before say, 1930 died before the age of 5 then this wouuld explain alot of the change in life expectancy
another thought, concerning the human gene pool and our toxifying environment, i've often wndered about the effect of all the people living and reproducing today that would never have survived before the advent of modern hygene, antibotics, vaccines, etc. and what is the effect on the overall health of our population to have all these less than perfect genes floating about, "artificialy diluting" the more "fit" genes of the pre-science/medical revolution. just blathering, thanks

Whew, I've been waiting a long time for someone else to say that. You just made my day Rick.

Michael, everyone gets tired and unmotivated. That's why working as a team can be the answer. You know that old quote from that Texan that used to come around - You fall down, you get back up -it's nice to have a teammate to pick you up.

The FOX Foundation just announced funding of 10 or more research studies. That means work for PPP, getting them all recorded in the database. But, again, we know our goals.

In 6 years, I've obviously deteriorated and worry about people taking our place or losing the ground we have gained. No one, and I mean no one, understands this illness like a patient does. And no one, will watch out for you like a patient can.

Edited to add: Oyster, I agree about statistics, and when you look at the overall picture of drug development, most stakeholders use statistics. Scientists rely on them completely, and academia and others use polls and surveys to prove points - neither can be completely relied on.



Paula

Is this why we have (6?) major Parkinson organizations in this country and they don't talk or share information between themselves?

GregD

Michael said:
There were times, now disposed, when the taste of the hunt would arouse the roaring spirt

definition of "disposed"
to give a tendency or inclination to; to make fit or ready; prepare;; to arrange or decide matters.
That definition indicates you haven't quit, you have just been in limbo.

My roar has dwindled to a whimper, and my passion's flame would do well to cover the head of a match.

It only takes a spark to get a fire going!

Standing then, I will stretch my sinews back to life and join with others to claim my right to Taste the Hunt until that last puzzle piece is placed.

It's about time! Welcome back!

Peggy

You know, Greg, that is a real problem to me. How can we possibly do what is best with resources spread 6 ways? How did this ever happen? What can we do about it now?

It doesn't give the excuse to do nothing, however. I welcome any ideas.

Peg

I actually meant the negative meaning of the word, but I think I like better the one you provided. Thanks.


Rick, do you have any idea how many people we have here who have advanced degrees in a field of expertise. I guess I am talking Master's degree and above? That, I think, would be worthwhile knowing. I have only a bachelors degree in the field of education. For twenty-five years I was a residential paint contractor hiding behind a pintbrush. I did spend 11 years teaching, and some of those years were spent teaching life science.









michael b.

And finally Everett
Give me a hundred such Parkies and I think a cure could be found.



Whenever I see some names I invariably know that the writing will be superior to any that I can contribute, fact.

But some of the remarks leave me feeling like the quote of Michaels and I wonder if that is the general feeling amongst you all and I have just not read into.

Then I wonder if I have by now just come to accept the comments made by some as just vacuous. Words floating on wind.

So you honestly feel that the ones who do not have Parkinson's [such as myself] really don't give a damn. I hope not but the comments made are so as to make me wonder why I ever came here or stayed here.

I have I guess for want of a better word developed Lymphoma and there is no cure only a waiting period as yet not known for it to travel it's ultimate course. Should I leave here and go to a cancer site or stick to my desire to find a course of treatment or cure for Parkinson's.

If i do this it will not suit me well at all. I don't want to develop that one sided attitude that I can alter or discover for myself a cure designed for me.

Your problem is not one of participation it is one of isolation. You have all of these groups and all are soliciting monies and offering services of one type or another and all think they are the cats meow.

It is no wonder Parkinson's had to wait till MJF was ready to go public with his diagnosis. But unless you are willing to accept under more gracious language anyone who wants to help in this cause then you had better start praying that there is another well known and liked celebrity waiting to come out.

I for one don't think any of these groups you are all touting have a chance in H of doing anything besides the Fox Foundation except rant on about how good they are and what they want to acheive.

I have heard this long before most of you were born and it hasn't worked any wonders that know of as yet.

But one thing I do know is if you don't get John and Jane Q Public involved and caring enough to contribut the cash needed then it is all for nothing.

You are only going to do this when you begin to take into your inner sanctum those who have Amyotropic Lateral Sclerosis, Alzheimers and any neurological disease that can benefit from the latest information and research going on.

You always talk about the numbers of people who have died or have Hiv. Well those numbers are going down and while my granson died from Aids he believed as I have just stated.

Join together and get the numbers or keep fighting the odds and take your chances.

Your all smart people here and if you can talk to and argue your points with the politicians and researchers then organize your own side of this fence. Put MJF on the side he now occupies as well as anyone can and set yourself up on the other to get the troops on board.

Hell a veritable united nations of diseasees and conditions united in the search for the cure of neurological diseases and conditions of which Parkinson's is one only one.

With much respect for what you do and as well for what you could do

Thelma



UNITED WE WILL STAND ...BUT DIVIDED WE WILL SURELY FALL

I have physical therapy today and have to write this fast. Thelma, I consider everyone with a chronic illness a patient and recognize the need to have coalitions. But there is only so much a handful of people can do. The rep from the breast cancer coalition at the meeting was very informative and we see the need. But they also have large numbers and much money. They get better - we get worse. We don't have the energy to do it alland we don't have the energy to fundraise. We either need people to help take this on or organizational sponsorship.

paula