will edit sp ask for your patience with errors for now so i can get it out. reminding that i am in paradise lost stage of sinemet effeciency.

Thanks for the comments Girija! a few clarifications and then it's good conversations ahead I hope. I wasn't actually thinking of it as a deal, but i see how you could think that. And the ideas aren't new, i was just putting a summary to major "stuff" in the community.

i agree that things do take time. We've been at this for awhile already. But now we have even more information and can focus on a specific area that a patient might be used. Patient advisory councils are already in place, but we would like to have them used to the fullest and sincerely thing there are factors that we will contribute [unknown at this point] It's partly due to lack of trust, and we experienced GDNF directly - that episode effected is profoundly but unfortuneately led to lack of trust, and correctly so. To this day certain doctors won't be in the samme room as others, etc. They argued in journals, so we are coming at this from vastly different perspectives.... We had no idea when it started.

Throwing in a Mike story. Do you recall him being on Boston Legal? He played a CEO who had bribed a clinical trial director for the actual medicine in a clinical trial. He had terminal cancer.. this resulted in an early death for another guy, who learned of the bribe and sued Mike [CEO] .

Mike officially denied any connection between the show and the GDNF incident. But there was script in there that I will always question. Mike commented on GDNF at the last WPC so it remains a touchy subject as does patient involvement. But the doctors would have been much more aware of the extent of GDNF's benefit if they had contact with their patients. Some did and some didn't - they were more overseers. Anyway, the point is, patients don't want to play doctor, researcher, or industry CEO, they want to offer what they have..after 10 yrs online, there is now a very solid group of "babyboomers" who ca contribute , or should be given the opportunity, even if it is as a watchdog.


Everyone should contribute to the "what can the patient do" conversation. But the status quo is to turn it into a process, stall it for 5 yrs [wish i was kidding] and there went any possible treatments to decisions made by .....not all scientists, but lots of business people. Anyone know a major org led by a scientist? I'm not saying there isn't one....I can't recall.

I'm also not saying that business people can't learn it. But they are saying we can't [ in so many words].

Specifically, my request would be to allow patients to see research agendas and coordinate them nationwide. That's not my idea, if allowed i will gladly attribute this idea to who told me. We make excellent watchdogs. I also want patients in on the decision making about what is researched. We have very little to nothing new to choose from, and I have to get holes drilled in my head. If they had stopped and treated - which all the patients who had been taking GDNF pleaded for [no adverse side effects to speak of in 3 yrs, but there were concerns. But people were free of pd and we will never know how long that would have lasted.

This treatment was refilled regularly , not like gene therapy. Patients went cold turkey off a medicine that some called the cure. To add insult to injury, it was handled very callously.

The impact of being directly involved with that surpassed my experience of knowing mike. A few emails were being exchanged at the time, and he gave me a heads up that he would mention GDNF at the WPC. So I was learning so much, but didn't know who to trust, and still don't. It's not that people are inherently bad, well at least not all of them,- it's that it is acceptable to treat patients this way. Bottom line first. Then some are bad also.


So no one made anything to potentially replace sinemet and now it's been used by perhaps the longest period of time since it was first used. It's not going to be pretty.

Of course this wasn't deliberate - right?

So i think patients on advisory councils shoul be involved in the research agenda, perhaps even before trial design, although there are patients out there trying to get alternatives to sham surgery and placebo effect failures, who are quite ready to tackle design. They are working pretty much independently. There comments were met with silence at the recent cere 120 meeting that was webcast....forget the name should know that. We don't want to do their job, we want to the missing link that can potentially get the right sequence of critical needs from experience.

posting because i hit wrong buttons too often and will continue.







quote=girija;530232]Thank you for clarifying that everyone is welcome!
I just had a conversation with a friend who recently started reading this forum on my recommendation. She is someone I think very highly of and her comments made me think about how others might view our posts here. Thank you all for clearly stating that this forum is there to help everyone regardless of their level of participation.

Having said that, I donot want to change the focus of this thread, so I get back to Paradigms of PD. Paula, the paradigms are not too clear to me, other than patient participation at every level related to PD therapy and rewards (cure) in exchange for patient participation in scientific activities.. Correct me if I am wrong!
Here are my thoughts on paradigm 1:

Patient participation: It is wonderful, adds a human face to the disease for a researcher and makes the whole effort of research a bit more personal. However, we all know PD has many faces and there are no unified set of rules to its onset, symptoms, progression or responsiveness to therapy. With such a complicated disorder, each of us have our own view of PD: some may stand the test of time, some may not, but are worth being heard. If we want to be heard or given a seat at the research table and be taken seriously by the research community, here is a suggestion: Since Rick et al., are planning on making a book anyway, why not put all our posts related to medical observations, white rat experiments + results and hypotheses also in the form of a book? This handbook can be displayed at the world Congress or be available to whoever wants it. Someone can make a poster or tw0 of "PD according to PWP" sort of topic........If anyone is worried about the BigPharma gobbling it up, I think there are public domains to place patentable ideas for free use.

Some of you may think this is a naive approach which will not work. This approach is a slow one, kind of like evolution, its happening, will have a permanent impact, but not very visible to every one, it is not a revolution. I admire those who think big and bring about revolutions. But I suspect most people are like me and I think there is room for all varieties in this battle against PD.

Thanks for listening
girija[/quote]

Thank you, Doc John!

I have had respect for this board since time began with NT a few short years ago. I found it to be a place where the "deep thinkers" congregated, more so that some other PD boards. In my opinion, only one other finds similar "deep thinkers."

Jaye said, people "who totally hide in a corner (like, never get on line or read anything) are dragging us all back by their unawareness of the desperate needs for participation in clinical research and for activism."

I don't fully agree with this, Jaye. I do agree that it is in a patients best interest to learn and study as most of us on this board do each day, about our respective disease(s)...be an educated patient. Having said that, I lead a support group that is full of people (about 40) who are not activist, don't know what it means or how to become such a person, and sadly, have no desire to be an activist. Heck, when I spoke to them about PAN, they had no idea such an organization existed. The only news about their PD they read is what I put in my monthly newsletter. I see my responsibility as a group leader to be the voice of education about the world that they have no clue about. Most of them don't even have computers.

Message boards are not much different. Each time we post anything on NT, we are speaking to not just those who are on-going posters and reply'ers, but to the membership who read-only (the majority, as Doc John stated.) I believe it to be our responsibility to consider this each time we post and/or reply. Are we making the "majority" uncomfortable?

Yes, "we all know PD has many faces and there are no unified set of rules to its onset, symptoms, progression or responsiveness to therapy." But...

I told someone recently by PM that I was not posting on NT anymore, but here I am doing it anyway...ho hum...and another long one too!!

I wanted to share some numbers about patient voices at the table as it relates to MJFF. 5 MJFF directors have PD. In addition, 13 MJFF directors have a family member with PD. So, 18 of our 25 directors (72%) have a PD connection. Also, we have one PD patient on our staff and over half our staff members have a family member with PD.

Debi

ok will edit afterward i'm aware it's a mess.

So girija bringing it to the forum, but leaving out so much more, now we have a forum that accepts alternative meds..lol. The original forum pronounced any talk of it as quackery...and ran them out with accusations of taking advantage of patients and just trying to sell something.

Ad we have a 'ommunity person'who owns the patent for mucuna pruriens and its use with neurological diseases, unless that has changed. Our faith in the cure and blind faith of the drug treatment community has forever changed. We were given no alternative in some cases but to convince ourselves we believed in ESCR.

Were we duped by the companies, as my representative Dave [throw granny in jail] Weldon so angrily said in an attempt to ask him a question about SCNT? For that i was described as "egging him on", in spite of the fact that he never let me finish. No support when you ....gosh i wasn't doing anything but asking him a question as a constituent. Never got it out.

There had to be a scapegoat i guess. That was my first experience with the reality of who you can trust at the org and even patient level. And my representative, who blew up and caused a fast down hill slide, had to be appeased [?] one can only imagine. eyes wider, starting to see a bigger picture of patients being under control and told to behave a certain way.

But i can see the need to get along with your rep, even tho he was passionately hated as the enemy to science progress. Big dsconnect and then i was forever questioning trust at another level. This wasn't a case of spinning it was it? It was the HILL - what do you think?

So now there are discrepancies everywhere and as patients we were united. Still are.I consider people running orgs friends - progress was made. But so so slowly. And with lots of fighting. People do that when they have PD and all come together with strong personalities. But we made progress in various areas.....one day it might be crystal clear. Hope everyone is ready to diigest it and deal with it constructively.

ok i should say here that my posts are available for the book, but ii have so many activist posts that i just ask that you clear each one with me - for everyone's protection lol. i am limiting posts due to health, Rick or anyone reading could you please add my name to the list.

girija sorry to not get to your point sooner. i think posters are the way to go. it's wonderful that they have patient posters. pipeline was invited to do one at the....oh dear....can't recall the group.....starts with an A..coalition. geez time to stop.i'll recall it the second i hit submit.


I think I will remain an available consultant especially about background like above, but otherwise stay in the shadows re WPC.
. Time for the experiences of others to grow...girija you are in an excellent spot and will see change - i won't predict when...lol...but you are going to.

ok will edit - when i can.
thanks,
paula

i've been blessed h an abundance of experience with this wretched illness and have to grumpily, with feet dancing, teeth grinding, head bobbing, face twisting etc etc say that it has enriched my life, but for what reason are we excluded now?

Hi debi,

Welcome back, can we start over?

mean it,
paula

no need to start over...just trying to be a listener and learner as well as a sharer.

Debi

that is a relief.

zzz
paula

Me too Debi. And because I have a PD memory recall of 0 I did an advanced search on the tag "What's Wrong with the PD community?". Using my ancient word processing skills I located references to: activism,advocacy,books,videos,patient input, database development, MJF, Segey Bin. ---looks like we don't need new paradigms. We need to focus (an overused word) on what has not yet been done very well if we want to have a patient voice. For example, how many people are answering the survey questions posed by 23andME? How many of this forum's elite posters have joined Perry C in his efforts? How many are siging on to Rick's team of posters and/or editors? Too few I observe.

Before any of you elect to comment further may I respectfully (and tactfully)
suggest you reread the aforementioned thread in its entirety. Bob C

bandido1 - just because it is not posted here doesn't mean that people aren't working hard.

You made one right point - the array of problems we face makes it hard to focus. Maybe we can't as a group; different causes appeal to different people.

The conversations on this forum around advocacy have become circular. It's become easier to stay away.

Carey wrote: "just because it is not posted here doesn't mean that people aren't working hard."

There is amazing advocacy going on around the country that few people outside of their local areas hear about. Here are a just a few that I know about (and forgive me for forgetting some / many -- there are many many more):

Ken in Alabama
Carol in Alabama
Ken in Illinois
Angela & Carl in Virginia
Herb in California
Leonore in New York
Cayce in Texas
Karen in Washington
Patti in Pennsylvania
Israel in NY
David in CT
John in CT
James in Georgia
Sue in Illinois
Michael & Gretchen in Florida
Jackie in MN
Carey in Washington
John in California