What really matters in this life one truth no one can argue ,we live we die how a life is lived is what matters.
Expression and interpretation of individual beliefs frequently become narrow and dogmatic The result is rigid attitudes emphasizing narrow minded ways of approaching perceived truth. Im talking of course about politics religion and culture and all there sub groups. All cause obstruction to research ideas and progress becomes restricted or forbidden as people follow doctrines and ceremonies in the guise of belief to express their feelings.

A no doubt familiar to us all, well known rule of conduct, found commonly in most cultures" Do not do to others what you would not wish to suffer yourself." To my thinking this implies respect for other individuals and for other views in this world.
When a major disaster strikes and unfolds like events in chile have, people from all corners of the earth feel the urge to help, financially or practically, because there is an immediate empathy for those who suffer. Human nature raw instinctive rises above. Nationality politics religion so many prejudices collapse and we become part of something. A bond unseen but united is felt. This is an expression of how the common good surfaces in adversity and protects society. It is not just an ideal, it is a practical automatic response
People are the strength and weakness of this world. Progress of life on this planet our future is born of our actions. The best of man seems surface in response to adversity The future already has more possibilities for people to communicate, to strengthen their bonds and to cooperate than ever before
Ideas rule the world, they say. The power of people one and all,the creative collective.


“Faith is the reality of things hoped for [intuitively discerned], the evidence of things invisible.”

I came to this website to defend the reputation of Big Pharma. They are all highly dedicated to research, I said, they save our lives, and the tort lawyers are just greedy for money.

Said I.

And some people here grit their teeth and refrained from going beserk. Wise survivors simply avoided arguing with me.

And then a little old lady told me about something called "Amgen GDNF" and then the sticky at the top of the page was called "Who Loves Art", a gentle entrapment if there ever was one.

I will be silent about Amgen after the names of all 48 volunteers are engraved on the exterior wall of their head office. The Amgen experience is an icon, a turning point for lots of PWP.

I could not fathom how the conduct of Amgen was being tolerated. Hahahaha! Naive every time. Subscribe to alerts by Jim Edwards at Placebo Effect and you get a new one almost daily. Here's one from last week:

Oops! We forgot to mention that 3,500 people died using our product.. http://www.bnet.com/blog/drug-busine...duct-8230/6009
Now, that is not a PWP drug and it is suggested that these 3,500 people would have died anyway.... but the problem is, in the thousands of pages of medical research, when they submitted to the FDA, they did not mention that one important fact - that 3,500 people croaked during the study. And people in suits and ties supported by people in white lab coats made the decision. And the patients, the doctors, the general public, were not supposed to find out. Imagine the meeting in the boardroom:
"Sir, we have a problem. The new drug- seems 3,500 people died. Should we mention that on the Infomercial and the FDA proposal?"
"Mention it? You are fired for mentioning it now. It never happened. We didn't know. What would it matter anyway."
"Next order of business: the annual bonuses."

There's a scandal a week in Pharma. And Amgen and Merck's sinement shortage were aimed straight at PWP.

So my praises of Big Pharma did not long survive on this site. Because the people who opposed me here had not only opinions, but a staggering amount of perception, insider information, passion, determination and facts, facts, facts.

I had no choice but to surrender.
And I especially salute the veterans of this site. The ones who went through the Amgen nightmare are my special heroes. And also some more recent members who really know how to point at the moon when I can't see it. Something about being blind and people teach you to see again.
And that's just my hobby horse. People come here to learn about everything from Faba Beans to surgery to diet; if it hits a Parkie, it hits here.
Hats off to y'all.

Greg - first you blew me away with your comments - that's one of the nicest historical posts I have ever read here. And as you alluded to, Michael J. Fox does not realize that we are all in this together because he "became as one of us" when chatting and reading (and who knows - maybe posting?) in the Braintalk/Neurotalk forums.

My first trip to PAN was at your invitation, and I must confess that I went really out of curiosity - because I heard Mike Fox was going to be there. It was there again that he mentioned the forum (Braintalk at that time). He confessed to chatting and reading posts and went on to name some of us. I was hooked then. I thought, "If I can write something that interests people like Fox, think what an impact I might have if I continue in this advocacy mode." And so here we are - a decade later and still going strong.

And Bob, then you blew me away with your post in this thread. I must admit to defending the big pharma more than most here, because I do believe there are some good people working for these companies. I have volunteered many times for GSK, and they seem sincere and have treated me like royalty (I don't get treated that way very often).

I do know this, if we want to find a cure, we are all going to have to work collaboratively. It's hard to forget the past, because some of our friends were in on that Amgen deal, and it left a very bitter taste in our mouths. But I'm ready to forego that now that they have allowed GDNF to be used by another company. And you watch and see if we weren't right about it doing miraculous things for Parkinson's symptoms.

I figure I have another "good" 10 years (aging symptoms are getting mixed up with the PD symptoms). I did my part - I donated my brain while still living. It wasn't as noble a thing as one might think - it was not out of desperation either. I sincerely wanted to do my part.

I wasn't able too go to Glasgow due to back problems. But I sent a video of my story (poorly done, but hopefully the message is clear). The session was on the final day. Attendance was sparce and the time ran out, so I want to share it with you here. It's kind of an infommercial lol - but take a look:
http://www.youtube.com/watch?v=laYS13TzhEc

I didn't mention Pipeline Project nor the "book" some of us are working on, because they are another story totally. But trust me; you'll be hearing more soon.

Comments, please. My advice - "keep on keeping on."
Thanks everyone. As PLWP used to say, We are family."

Peg

Dear Peg,
I am greatly pleased that someone with your seniority is following the method of disperse, infiltrate and co-opt. You have successfully infiltrated a segment of Pharma. Just your presence among them will lead to some of them being co-opted, and joining us. The more that PWP infiltrate Pharma, the better. There are tens of thousands of brilliant scientists working in Pharma, and many other professionals; for example, the logistical distribution of pills organized by big Pharma is a marvel to behold. We want to brainwash as many of these people as possible.

At the same time, these thousands of good people in Pharma have increasing difficulty competing against companies that routinely break the law. It just cost less and get fast results to break the law, so honest dealers in Pharma are immediately at a disadvantage. The huge profits, excellent for attracting more investment, have also attracted some top-level dealmakers who care nothing for patients, or cures, and who almost boast about the extent to which they can get away with violating all the laws of man, God, and nature. Testing drugs on Third World school children is a good example. By which I mean a bad example.

Whoever can do so, find ways to infiltrate this structure, and co-opt its inhabitants and get them reading this site and cooperating with groups circling around it. But there also need to be rabble-rousers on the fringes ranting and raving when the criminal element win the competition by committing unethical acts that defy imagination. Disperse, infiltrate, co-opt; and only when necessary, give a swift kick; if they refuse to speak to the moderates among us, then they end up dealing with less reasonable people, and eventually they will have to change management, because the patients will actively promote decent behavior on the part of Pharma, and actively denounce those who are violating laws and ethics. And generally those are short-term dealmakers who have hijacked Pharma companies; generally, it is not the scientists we are afraid of; it's the ones who pervert science for short-term financial gain.

And you'll find that lots of people working within Pharma will agree. Co-opt them and drag them home. Congratulations on your skills at infiltrating. We can help their careers as well; sooner or later there will be huge changes and huge shakeout in Pharma, and every individual you co-opt will end up having a much better career than the few who violate ethics for profit and thrills.

Keep on keeping on. This is a train coming, and you can already hear it, because it is just around the bend.

You just made my day - no, my advocacy career! Thanks

Peg

As always, Greg, your pieces are exactly what we all wish we could have written. I agree that Bryn's speech was truly a remarkable and moving opening, saying aloud the thoughts that we have all heard in collective whispers for long enough now that each of us feels some ownership in the ideas he expressed.

The time is here and it was evident that those at the Congress were aware that we can tolerate no more delay. The time has come for all, physicians, researchers, pharma, allied support and PwP to put away territorial feelings and hopes of riches and JUST DO IT. FIND A CURE. We don't want another delay, another form of agonist or l-dopa or another method of fiddling with our brains. We are not interested, as Ann said, in charting our progress to an eventual miserable end. We want to stop wasting time and fix it.

When the AIDS epidemic began they were told invariably that they would die, but they refused to accept that. They joined forces and DEMANDED to be heard. While AIDS has not been cured the progress toward that end has been remarkable. There is so much to be learned from thier approach of not withdrawing but instead standing together and SHOUTING.

For many of us, it is not our nature to make waves. We, especially we older ones, were reared to respect authority and doctors were very much in that category. The sixties changed many but not all. Our tendency has been to sit quietly and wait to be handed the magic pill. I sat for ten years trying to look as normal as possible, wasting time and energy. What an error. I am only glad to still have some energy and enough fight left in me to stand with those making DEMANDS now. What a privilege.

Thank you Greg for your institutional memory and your fabulous facility with words, for retracing our shared history and sharing with those more recently numbered among our ranks what can happen when opportunity meets determination. It is our mutual good fortune to be living now, in the information age and the age of the internet. This time could not have come before now, but now it is here and if we fail to come together and take advantage of it we will have only ourselves to blame.
Pam

As always, Greg W., thanks for all you've done in the past & for your continued efforts now & in the future. Since being dx in 1998, progress in the fight/search has been made, but I'm still hoping for more control of PD symptoms & drug side-effects.
Thanks to all in this thread---I see many familiar names.
I really appreciate all the info., presented in a clear & helpful way.
Will be in touch, Greg.
Mari-Mari

greg,

your writings have always captured and held me fast from the beginning to end. i saved your Ghosts of a machine and refered to it several times in parkiejam and at support group meetings. thank you for you and aj's invaluable input in the mgh days up til now. i still may head that way some time for that fdopa spect scan... lol. take care my friend. hugs to aj.

laura

I guess I owe you an apology. I just commented on what Bob said, but you know I am the Peg of your heart (get back AJ! lol) I love your writing - always have. Although you are a former lawyer and can spin a yarn bigger and better than the best, your writing goes deeper - it consumes my very soul. (I'm not kidding!)

When are you gonna put some of your stuff together and write that book??? Oh, I will wait.

Peg O-Your Heart

Peg,

I don't think you could offend me if you tried. We go back way too far for that. Plus, I know you for the thoughtful and kind person that you are. What a long strange trip it's been, to quote those San Francisco icons, the Grateful Dead. Go Giants!!

Greg