just to clarify, "we" means us, but 'didn't see us coming" meant in general about the whole thing. the "incident' for which we are all potentially being held responsible for at the WPG was between a gdnf trial participant's spouse and the doctor.


to have something that relieves us from misery, then take it away, when there were people who had been on it for 3 yrs was unbelievably inhumane. i might have acted up too. but i wouldn't recommend it. apparently he isn't going to forget it.

paula

If we can keep some momentum going....
To do that we need to focus on a plan as soon as feasible.

We have a lot of things working against us and we best recognize them right from the start. My list would include:
1) We're sick. That limits our travel, our strength, etc.
2) Our personalities are such that we all want to be in charge. We can't help it. It's how we are made.
3) We're talking about taking a stick and whacking some big dogs. If we are successful, they aren't going to be happy. It will be easy to paint us as a bunch of malcontents.

The bright side to the above:
1) The Internet offers ways around distane. Most of us can't be in Scotland at that conference. But we could each film a short video clip as to what is wrong with their agenda and post the collection to YouTube the day of the convention with maximum press releases. But we send out advance copies to all the scheduled speakers a week ahead of time telling them that we plan to be a problem. They won't know whether we are going to flop or not but won't want to take chances. Our price to make nice? Show the blamed video as part of their program

2) See how I jumped right in in number one above? There is an advantage to everyone being in charge. If we are all decentralized autonomous units the group continues to function as individuals have to cut back. It isn't riding on Paula's tired shoulders or anyone else's. It also can't be countered by pressure on any single person.

3) We don't take their money and we try not to play their game, at least not by their rules. The idea in number one is an example. Think of it as guerilla advocacy via keyboard.

Some specific projects-
a) A "tell it like it is" handbook for Noobs.
b) A website to promote ourselves from.
c) A listing of promising research abandoned or killed
d) Learn how to use the media. Shouldn't need to reinvent the wheel here.
e) Start recruiting "fellow travelers" by invitation.
f) Set up a blog to coordinate things

paula, that is what I thought you meant, that a global community of people with PD are being excluded from discussions on development of treatments that will absolutely affect their futures because one person very understandably dared to 'upset' things. when i read your words they seemed to encapsulate everything we are up against.


QUOTE=paula_w;523610]just to clarify, "we" means us, but 'didn't see us coming" meant in general about the whole. the "incident' for which we are all potentially being held responsible for at the WPG was between a gdnf trial participant's spouse and the doctor.


to have something that relieves us from misery, then take it away, when there were people who had been on it for 3 yrs was unbelievably inhumane. i might have acted up too. but i wouldn't recommend it. apparently he isn't going to forget it.

paula[/QUOTE]

I'm glad we have representatives at the level of World Congress, and I'm very proud of all the members of various leaders' groups who started out here on this board and its predecessors.

I would hate to think that disruptive activity would lead to a loss in what has been gained so far. The researchers I have talked to are becoming aware of an angry horde out there, angry with doctors, and seeming to expect "every researcher to be the protestor's personal physician." I emphasize that we need to learn how to advocate for ourselves in the examining room. And, as Paula says, referring to any action, to get our facts straight.

I hope also that anyone who is new to this site or this medium is aware that we are all speaking for ourselves here and expressing our own opinions, and some of us, at least, don't think of newcomers as hapless life forms.

I will now withdraw from this discussion in favor of carepartner care. It's time to cook another scrumptious dinner.

Jaye

This has been one of the best discussions we had here. Thank you all for sharing your thoughts and listening to my thoughts.

Yes, we need to focus on a plan as soon as possible before we all lose our enthusiasm. As Fiona stated, we all want a change, most of all a cure for PD, but have different ways to reach that goal. I think this diversity is our strength and collectively we can achieve our goal.
From my point of view, which I agree is biased.... the approach cannot be us (Patients) vs them/(clinicians, researchers and pharma). As a PWP, I cannot find a "cure" by myself, I do need the establishment for that whether I like it or not. As a researcher, if there are no patients, I donot have a job. I may have my reasons (such as feasibility, expertise, and funds) as to why I dont seem to .jump into "new" things or ignore what seems like a great idea to a PWP. I need to convey that message to a PWP and not ignore him/her. Researchers and clinicians must learn to respect and seek patients' input (no text book can describe the symptoms of PD better than a PWP). Patients need education on PD and various therapies and show the "big guys" that we do know what we are talking about. Just as Greg and Fiona said, ACT but not act up, be firm in your demands and make them understand that it is a 2 way street. I think this relationship is like symbiosis, we take advantage of each other for mutual benefit.

THat is my two cents worth. I havenot said anything new, but just wanted to say how I feel about these issues. Now I will sit back and listen to more experienced PWPs about the course of action to keep this spirit alive!

thanks again
girija

As a teacher, i have a difficult time functioning with people who are out for money. i have never operated under that umbrella, except as a cheerleader mom and i hated that.

i do understand the scope of what researchers are trying to do. amgen got entangled in some very questionable decisions and people were watching. we didn't know there was a participant group out there when we sent out our first public letter asking for help from the orgs. all the conditions were in place for action on something that meant life and death to us.

business overrides humaneness, emotions, logic even it seems. it's not personal, it's just business. well, that works both ways. if we do criticize people and they consider us angry, they shouldn't take it personally, it's just trying to save our lives. i don't have time to play poker facey with anyone, i don't want to bump chests with anyone, i just want a treatment that could help while waiting for a cure.

so to doctors against patients at the table, i can honestly say - it's not personal. it's just business/ of trying to stay alive and functioning. it's just not all about you.

to have to compare the two this way says a lot about how twisted our decision making has become.

paula

People are naturally very sensitive about their doctors - well, after all they hold our well-being in their hands. But there are ways one can say, "Hey, wassup with this issue..." and get the ball and discussion rolling. I adore my doctor - lovely, lovely person, but a lot of the time I feel like I'm kinda leading him along. Every time I see him, he says, "Oh, no, here come the folders," as I pull out copies of the studies or articles I want him to peruse and tell me what he thinks...

But it can work. As I mentioned in another thread, when he tried to put me on Azilect, I went home and read up on the study, decided it wasn't a good choice for me, explained why to him, and he said, "Ok, you have a point. Fine."

I don't know well enough the history of the PD grassroots organizations. But my sense is, they have been too quiet for what we need now. This is a particular moment in scientific and medical history, where many things that have been hidden are being exposed, and when the technology of the past decades is maturing to the next step, re-evaluating what it's done already, and the paradigms are shifting. So maybe now this is the time to have a really strong Patients Only organization - which as Rick says, we can do on-line -and yes, maybe join forces with other neurological conditions. Why not? I'm sure we share some issues. The thing I think we need are a group of motivated, savvy patients who aren't waiting for the nice man in the white coat to hand us what we need, but are very proactive about getting as much info as possible, asking questions about it, questioning procedures and protocols, asking for results - in short, being very informed and responsible patients who realize that their bodies belong to them, and that no one gets to dictate what's going to happen to them.

It's too bad that Dr. Olanow's sidekick there had a problem with an emotional Amgen caregiver - but that really is his problem, and he has to get over it. And I think we should be more demanding as to why the patients remain irrelevant - is it because the only real concerns are market driven?

I'm slowly gathering some concrete suggestions from this discussion, and everybody has contributed a lot of great stuff. I think Rick's point was not that Noobs are hapless bundles of flesh, but that there is an orthodoxy of medical point of view that is presented, and the real experience is very often not reflected within that. They're not hapless, but how can they know unless we tell them what our experience is? I wish I had had that information.

I liked Rick questioning the study contact on Vitamin D so thoroughly. They need to get used to that.

may the force be with you... i have no desire to lead any more movements.i'm still appreciating the affiliation with companies and and orgs that are just bginning to emerge and the more we help, the cheaper it may get. i don't think they are quite ready yet [23andME] but they are motivated. and making collaborations - i have some hope here. i think they could and should engage us but if you aren't into it you aren't. i do think you could get your message out on you tube. i wouldn't put up anything negative, but "i'm not sure" should be up, speak one and all!

gary and bob. you are at a place where you can make statements. i hope you can send them. i'd like to seethe channel become a patient advocacy site, clearly intent on exploring the genetic options. who knows what global accelerators we'll discover.... or become.

i have had a book idea presented along with the assistance i need. i think i'm going to actually consider this possibility. so there will be much going on.this is meant to be totally uplifting and no cause for concern for anyone who's ever been on the boards. that's not the reason...this is for inspiration and what it accomplishes.

may the force be with us all. may it be productive.
paula

Paula mentioned how humaneness and common decency go out the window at the business table. That doesn't have to be that way. Business's great strength is also its great weakness in that public perception is critical.

What I mean is that if given a choice between treating a group of uppity patients with a little respect and having them show up with a camera crew in tow at a bad time, any sane businessman will go with the former if costs are even remotely equal.

That isn't true of academics. They live in a sheltered environment. But the people paying the bills don't have to be told of the risk/reward hear. We approach them with respect but firmness. We aren't out to damage them. We just want our own way and hope to enlist their assistance in avoiding a very embarrassing situation at next month's or next year's conference, board meeting, etc.

We can identify donors to orgs and investors in research and alumni at the schools where research is taking place. We can identify the politicians who oversee NIH funding. We can write to these people and explain our position without making threats but asking that they knock a few heads together. We can write the other members of the committee that oversees conflicts of interest at Mt Sinai and ask if the matter of their fellow committee member Dr. Olanow and his conflicts detailed in the press has been dealt with and if not, why not. And we can carbon all that to Sen. Grassley and so on.

In short, we can leap frog over the guys on the bottom and make the guy with the money an offer. "Sir, you and I have a problem that I suspect you are unaware of...."

gary and bob. you are at a place where you can make statements. i hope you can send them. i'd like to seethe channel become a patient advocacy site, clearly intent on exploring the genetic options. who knows what global accelerators we'll discover.... or become.

Paula: See my title. It applies to this thread. It also tends to send my mood into roller coaster moods. It also suggests a title for those who advocate writing a book--The Peripatetic Pursuit of Parkinson's Patients", with a preface acknowledging Aristotle's influence. Ok. Look it up! I too, have little desire to head up any of the suggested approaches. as you know I am currently directing (I dropped "focus" and "bottom line" from my vocabulary) my advocacy/activsim to the national level working now with Perry Cohen and the development of Patient Health Records aka PHR. Also, my contacts with Washington's Health Care Reform activities continue to allow me to pursue patient input suggestions for the IT database.

I have not abandoned the 23and Me particpation and indeed was impressed with the one hour video of their meeting with Google personnel, scientists and researchers. Our NT group would get some additional insight into the work they are doing. How many of our posters do you think have been active enough to answer the surveys they have asked us to answer? In my view genetic options should stand with others mentioned in this and other forums searching for existing and developing symptoms, causes teratments and the cure.

Thanks for your continued involvement. This old man appreciates it! Bob C