find all accelerators
 

This is a google command. Judging from the context, i guess an accelerator is anything that speeds up the search process or the transfer of information that you want to go out. tag words and html used to the tools i used as "accelerators." if i am wrong , please correct.

This post is revisiting the orgs. It was probably about a year ago that Todd started the infamous thread about the orgs and we tried to organize to develop a database. patients need help when they are advanced, but let's look at where we are a year later.

there has definitely been progress made with MJFF. i would like to think that debi, and others, are really getting to know the illness, thru us. The fuss started over this pdonlineresearch being announced as coming and that patients could read it but not participate. That poor first guy who came in. But the forum has always been a tough place in it's own way.

Then we were surveyed, and i' m not sure if it was used, no results announced that i know of. so here we are ..with it online. i tried to register, thinking i needed to. now i see we are permanent guests, which i resisted at first, but revisited. It is enough for now, i think watching and asking questions is good. And appreciate the efforts.

But i am very disappointed at the prevailing attitude by researchers that patients cannot be at the MJFF therapeutics conference. A group of us, who have been here for 10 years and are very knowledgeable and advancing, should be there. The reasons, in my opinion override the researchers assertions that patients interrupt with questions and slow the conference down. If that is true, the wrong patients are in attendance.

we let our posts out in here dripping with paranoia and emotion because this is a forum set up for those emotions and providing support for them. But we still clean up real good and know how to be professional. And we have a need to know the very latest, hot off the press, or get a DBS.

The orgs have yet to recognize a patient group, no, PLM is not a patient group - it's a business and things are getting very interesting as they set up a "new kind of research." But they are not a patient group, patient advocates don't get to speak for themselves quite often, most of the time, as portrayed in a meaningrful analogy by jackie christianson. The pipeline projecct has been recognized by two orgs and heavily supported by PDF, but it has never been given the credit for how much advocacy it has done, because we all have advanced pd and are not easy to work with.

Yet, i ask you, what other patient advocacy group has met weekly for phone conferences for 7 years and still has active founding members. Most of us don't blow our own horns. We support others with our work. i shared everything with this forum.

We are qualified and should be viewed as visual models, with everything going physically with pd and mentally with meds. We are who you are meeting about talking about- trying to help? we know what trials are going on, what is preclinical, we know the pipeline. we know the insincerity level in a person's forecast. by the way did mike fox know dr. oz was going to say that about skin cells? that was awkward and he predicted under ten years. not a given at all .
i'm posting before i lose it and will continue.

paula

what is a patient advocacy group?
 

starting off quickly saying that i am not asking that all the pipeliners [ and no one else] be permitted to attend the therapeutics conference.

i am saying that we are a group of advanced patients who have each come into our own, and have remained loyal in spite of much criticism and no vote of confidence in the community. we have multiple issues, have never been big stem cell advocates, and changed the way clinical trials respond in research.

Amgen just felll into the net we were weaving to watch out for just that.
But credit given...heck no, not all patients are advocates or activists and just d on't pay
that much attention. that's an individual choice. and the orgs? they jjust don't when it feels really important.

i like many in the orgs and have called them friends. this isn't personal at all. but i need to point out that they are slow, they slow things up too. ironically, what we are told we do,

i am not trying to put debi on the spot. i wouldn't post this if i felt she could not handle it and she can. i've been trying for two nights, lost some here, then moved to email. i'm hopelessly careless and clutzy now. i need to know if there is reason to not get a DBS. I want to talk about this with those who know what's going on both here and overseas.

A group of us met in mgh chat ten years ago. that group included tena, peg, [she mostly missed mike as she wasn't in good shape then i don't think] but he knows her know. mike talks about all the good things that happen to him, but he rarelly mentions the people he met online like it or not , my inspiration from that period still drives me, altho it is not mike generated. In my eulogy, i think it needs to say,
"Nana had the most peculiar habit of talking to michaeljfox online and emailing him. She finally recovered after he went two years without answering. this is parkinsonian behavior, but i was making progress and i kept him updated whether he liked it or not lol.

i know othrs there might have gotten a chuckle rfrom the emails finally, there really isn't anything more to say. i'm glad he is positive, have a hard time relating, as i do with most things these days it seems.

truth is we all have done as much as we could. since i am saying this publicly, i will not engage in a struggle over this upcoming conference, i like having debi here and who would have guessed she would be here. i trust debi.

welll we talked about a video, a few faithfuls helped, it could have been a multi group cause but it wasn't. with their patient collaboration, i am not sure it remains accurate. this wasn't mentioned to me. again, patients are very connected, we aren't just going to give up our community as we know it. this needs some sensitivity.

ok i have said enough. i ask all of the orgs to let patients at the table. you would be surprised at how well we handle ourselves. pd and med deblitation need to be sitting at the conferences, as they certainly can be accelerators.


thank you, maybe in another year we.......anyone care to finish that sentence?

tired , will fix typos later.

Paula,
Are you talking about the Therapeutics conference in New York in Sept/Oct?
I am thinking of attending and I posted a message here assuming someone from this forum would surely be attending. If its the same one as you mentioned, I didnt see anywhere in the application where it says its only for scientists. I am surprised to hear that it is a closed and an exclusive conference. Please let me know which conference you are taking about, I will do my share of complaining to them. It may not change their minds, at least makes them notice the population they are working for and ignoring them at the same time.

thanks
Girija

application or registration
 

hi girija,

you will qualify as a researcher and lucky for us that you do. this is the third one and the MJFF policy is, as far as i know, in effect. Patients should not be in conferences with high level scientific language going on. IT's hard to explain that those of us who do literally daily, even tho we don't understand the chemistry, daily read scientific articles, can follow it enough to get the gist of it. I'd sooner drop dead than interrupt with an annoying question. it's a priviledge; and should be respected.


but did you say you filled out an application? i don't apply for any conferences that i have attended. that sort of speaks for itself. They also need the slots for the scientists, but we are scientists too and have to take the risks. i see some of us, not all, as qualified.



thanks girija,
paula

Hi, Paula,
 

Have you read the oath that doctors must state before they receive their doctorate M.D. degree. It reads very much like a Mason or Knights of the Columbus oath. It is not just the Hippocratic Oath, but the promise to work "with their brothers" and to never betray them.

Although I chose not to advocate, I admire your efforts. I feel as though the patient advocates have bent over backward providing revenue for the Parkinson's foundations, only to receive a plaque and little credit for their efforts. Many drag their entire family into the process, and get credit on paper but little credit for their input. Many have lost their partners, who were trying to make a living and still have the American Dreams, and were tired of carrying the anchor their PD spouse had become around their neck .

I have a suggestion for a new Parkinson's emblem. The PD tulip surrounded by the words, "Don't tiptoe through the tulips!"

Miss. Vicky

Well, in my view, NOTHING is going to be advanced for Parkinson's patients until we get loud, demanding, and in the way. Nothing. I mean, we're worried about decorum or being threatening with our questions, when the researchers don't even want to look at us, let alone listen to our experiences and concerns???? Whose interest is any of this work being done for anyway? The lack of respect and even basic humanity is just appalling.

Doctors from the period where AIDS patients really united have related how they were just barely able to organize all the information their patients were giving them, so much was coming from the patient side. AIDS patients demanded a lot, they were politically totally abrasive, and had no worries about being polite. They didn't get a cure, but they did get the possibility of not dying immediately and possibly having a life still. But it took civil disobedience and basically a major power struggle with the status quo to get that.

I know the model for our disease is different - we have less in common, our disease is slow, we tend to hide and be ashamed, and we're not young people dying rapidly....But this whole thing is inescapably political, inescapably about money, and we've been jerked around a whole lot.

When I hear about endless conferences with "ideas being brought to the table", and possibly considering a tiny bit of patient input, or tolerating some patient observation - at this point, I am ready to lose it. We don't have that kind of time and the whole process, the whole model is seriously, seriously broken.

Yes, I know there are many well-meaning doctors, researchers, even pharmaceutical guys and god bless 'em. But no matter how good their intentions are, or what fine people they are personally, they need to start facing the fact that the whole system of clinical trials, of collecting data and evidence, and even of diagnosing and recommending treatment, has been greatly, greatly compromised over the past decade or two. No matter how good individuals are, they are serving a system that is not working for us to say the least, and to be more honest, is basically corrupt.

We should be storming the gates of Amgen and demanding that they at least release the licensing rights to GDNF, and restore compassionate use to the people that participated. At the very least. Instead, we kind of collectively say, "oh, well..." and move on???? We're worried about stepping on researchers' toes? Why? How does that possibly serve us, unless we want a few more dopamine agonists with ridiculolus prices in the world, and call it a day.

It has not been good enuf, the lack of progress, the lack of transparency, the lack of urgency, and the underlying greed behind the whole thing. There's no way to be polite about it.

It's hard to organize. I don't know how. But at this point, I have had it with negotiating within the existing system. I, for one, would be interested in joining any initiative that demands some answers, that proposes entirely new models, and steps fearlessly over all those in the way. I don't have time for or interest in anything else.

From Impure Science by Steven Epstein, which I found at:
http://www.escholarship.org/editions...;brand=ucpress


..."As treatments activists followed, or contributed to, the debates surrounding AZT, they also devoted increasing attention to new drugs, such as ddI and ddC, that appeared likely to be the next additions to the therapeutic armamentarium of HIV antivirals. Since these drugs were chemically related to AZT, few thought that any of them would be an ideal therapy; but nothing else was anywhere near approval, and ddI and ddC at least showed promise. Perhaps they could provide alternatives for those who couldn't tolerate AZT's toxicity or for those who, over time, had stopped benefiting from AZT. Or perhaps some combination of these nucleoside analogues would prove more effective than AZT alone. Throughout 1989 and 1990, as AIDS treatment activists pursued the approval of these drugs as well as others that treated opportunistic infections, they became ever more enmeshed in the minutiae of clinical trial design—a set of topics that, increasingly, they would debate face-to-face with researchers and officials from the NIH and the FDA. This direct engagement with the terms of clinical research would both establish the scientific credibility of the activists (or certain of their representatives) and ultimately alter the pathways by which specific treatments came to seem credible in different quarters.

As with the parallel track initiative, a turning point came with the Montreal conference in the summer of 1989. ACT UP/New York had distributed an AIDS Treatment Research Agenda blasting the ACTG program and detailing the activists' demands: more compounds in clinical trials, an end to placebo-controlled trials that required "body counts" to prove efficacy, greater access to clinical trials by all social groups affected by the epidemic, and more flexible protocols with broader entry requirements. Susan Ellenberg, the chief biostatistician assigned to the ACTG trials at NIAID, recalled seeking out the ACT UP/New York document in Montreal in response to her own curiosity: "I walked down to the courtyard and there was this group of guys, and they were wearing muscle shirts, with earrings and funny hair. I was almost afraid. I was really hesitant even to approach them. …" But after picking up the document, Ellenberg quickly found herself "scribbling madly in the margins." Though most of her marginal notes reflected dismay at activists' failure to understand, "there were many places where I found it was very sensible—where I found myself saying, 'You mean, we're not doing this?' or 'We're not doing it this way?'"[51]

Ellenberg brought the ACT UP report back to Bethesda and shared it with her colleagues in a working group of statisticians who had been meeting to discuss challenges posed by the AIDS epidemic. "I've never been to such a meeting in my life," said Ellenberg. According to David Byar, the chief of the biometry branch of the Division of Cancer Prevention and Control at NCI: "I think anybody looking at that meeting through a window who could not hear what we were saying would not have believed that it was a group of statisticians discussing how trials ought to be done. There was enormous excitement and wide divergence of opinion."[52] Soon afterward, with Fauci's consent, Ellenberg expanded her Statistical Working Group by inviting representatives from ACT UP and other community-based organizations to participate"....

thanks vicki, and you've had the nicest things to say lately. i emailed my friends after listening to the news and said,"forget everything i said, the world is so scary that i think we should become.....optimists." of all things.

it's the only way there is if you want to survive. giving it a try now please refer to me as paula -ana, which is close enought to pollyanna.

sorry if i confused you vicky, buy there is some real testing going on.
we can't talk about the bad stuff anyway. one week all postive statements....no too long? we could have a contest forum wide..who can collect the most positive statements in 24 hours and no negative commrnents allowed during that 24 hr period? manipulation? how would i know...lol escaping reality might be the preferred exit. the sky needs to take a deep cleansing breath. Cable tv tone it down, mainstream channels tell the truth at least once a day,you know, what you learned in Sunday School.

i could probably break a few habits by talking positively for 24 hrs. i'm extending the challenge into your homes....

paula-ana

Well said Fiona!!!!!

Activism to me means active and what remains for the cure of Parkinsons and Als as well as many other diseases is precisely that ............becoming active.

Billions are effected the world over and yet we still discuss whether we should be angry enough to have a say in our very lives or remain............talking.

Cooperating is not going to work and neither is sitting and waiting for MJFF and his organization to find a cure.

We have to take the initiative and cure ourselves. No silly slogan is going to make people care only the fact..............and fact it is that one day they or their loved one will definitelly be a victim of one of these diseases.

Bringing it home to roost so to speak is all we can do and while we have the web what better way to make it be an instrument for good rather than what it is now.

If Tena can find AArdvark and he comes here surelly we can find our own home on the web to make the change we all need.

I love the thought You want a cure than go for it.com

just seeing yours fionia, i seem to cry much easier these days but for many reasons [remembering my vow just two minutes ago] but i cry the tears of a smilie face who brings sun shine to Florida.....Fiona, which grows the flora and fauna in Florida Fiona. happy times happy tears as i begin 24 hrs of potential optimism. what the heck\but not before rating your posts above with my mystery symbol - you can't see it, but it means as good as it gets.

i just wish we could save afew steps and just whoa - hard to remember the optimism but it could be fun. Funny words, fun with words. I wishyou all love and i'm going to go get that bobby darren dvd,

totally pulling your leg and am smiling - for 24 hr? what do u think? or juat ignore it i'll get over it
paula -ana..lol

Thelma thank you
 

i was full of self disgust over complaining again, sure that i need to just exit, and to a large degreee i do need to. the dbs eval ball is in motion..gulp.... but for today, i'm going to smile, be positive and and see if thelma will answer a question , just a simple "how ya been?"


we miss you,
paula

Fiona is right of course
 

If you want to get really depressed go to an archive such as PIENO (?) with posts back to the mid-90s with people just like us saying similar things and being told the same pablum. Those folks are dead and if nothing changes some poor soul is going to be reading these posts in fifteen years with the same despair.

The vast majority of the time decisions are made in the organism's self interest. This is true of bacteria, PWP, scientists, and orgs. It often is unconscious and often well intentioned, but down at the core the survival of self comes first. The interests of PWP demand speed. The interests of researchers demand methodical (read "slow") repetitive work. Orgs have their own interests and those of investors are plain.

Four different and competing interests. If PWP get the cure they need, the other three are history. This triad is in charge. They control the money and the debate. We PWP play nice until we are too bad off to do much.

What to do? The only thing I can think of is to warn the Noobs and radicalize them now while they can show up out in the halls with cream pies. :confused:

I refuse to believe it's too late for us. We basically know that there is most likely a cure already in the GDNF treatment - maybe the catheter had to be slightly redesigned or whatever, but let's face it, the evidence is pretty much there.

So why don't we stop walking around Central Park, get everyone that can possibly come, be in our wheelchairs, our walkers, whatever, bring our caregivers, our most loud-mouthed friends, any doctors REALLY interested in helping us, get any PD organization that hasn't been cowed into submissive silence to lend their muscle behind it, and go over to the Amgen offices and refuse to leave until they talk to us. And let's use the walkathon money to take out a huge ad in the NY Times and some other remaining papers, and on their blogs, demanding that Amgen release the rights on GDNF if they don't want to go forward. And try to boycott them as much as possible until they do. Make it worldwide.

I'm talking off the top of my head here. And I know these are fighting words, and a lot of people will be supercilious about them, or scared, or whatever. But I have had it with reading sad stories about the Amgen trial or all the sufferings that we all are familiar with on a daily basis, and sighing, saying "That is just SO sad..."

And people who want to hide behind proper procedures on trials and so forth - well, they can streamline things to market when they feel inclined - Mirapex, Vioxx, etc. etc. AIDS patients found a way to force the appropriate hands when they needed a solution and the work to be done NOW, not later.

We need to develop and speak from a culture of courage. With this disease in particular, silence and invisibility are deadly. While I think it would be best to focus on the Amgen thing because I do believe a cure is sitting right there in front of us - or beside us -while we're at it, let's have a very strong vocal campaign to reach out to all hospitals and emergency rooms and get a clear and appropriate protocol for handling PD patients, doing the necessary education of the nursing staff about the medication, and not try to win them over. Tell them the way it has to be. It's not that complicated. IF every one of our doctors called their local hospital and asked specifically the right people (and they will know who they would be or could find out) to get this information out NEXT WEEK, something could happen.

So I know now some operative from Pfizer or Teva or Roche or Lilly is going to want to stealthily knock me out with a baseball bat, but you know what, I don't care. I'd rather that than go on with this crawling mentality, begging the world to do us a favor. Most of us here could educate most neurologists to a higher level than they push themselves.

It's time for self-respect, clarity, and self-definition. We have a good idea of some of the things we need most. We need to stop being dazed and confused, and have the integrity and dignity to demand them. Apologizing for having PD is OVER.

(Fiona--I was composing this while you were posting)
I too know lots of well meaning docs, researchers, scientists, mothers, fathers, etc. they STILL are not bucking the system--as long as they continue ignoring the corruption and greed in front of their faces, the status quo remains. My library shelves are filled with books titled: "Monkeys In the MIddle", Howard Brody's "Hooked: ethics, the medical profession and the pharmaceutical industry", Marcia ANgelle's "The Truth About the Drug Companies: How They Deceive Us and What to Do About It ", Merrill Goozner's "The $800 Million Pill: The Truth behind the Cost of New Drugs " J. Douglas Bremner MD, "Before you take that pill. Why the drug industry may be bad for your health" Russell Blaylock MD, "excitotoxins The taste that kills"
Fran Hawthorne's "Inside the FDA: The Business and Politics Behind the Drugs We Take and the Food We Eat "Jerome Kassirer MD's "On the Take: How Medicine's Complicity with Big Business Can Endanger Your Health".
I have had to stop reading these at night--the facts presented keep me sleepless into the early morning.
You are able to obtain copies of these books and many more chronicling the collusion btn big pharma and medicine/research at your local library--NO One checks them out.....
Fiona, I will meet you on the steps of wherever (given enough lead time to obtrain a reasonably priced airline ticket). well meaning people who do nothing to change/stand up to the corruption within their profession are not going to help us.....madelyn

In addition--what happened to Andrew Grove???? I was in hope he would champion PD's causes

Count me in too.
Amgen's head office is in southern california.......Not too far from where I am..

I was just diagnosed at the time Amgen thing was going on and was in my own world of hallucinations, thanks to requip.
I sort of know what happened, but donot know the details. Any websites that would give me an accurate picture of what happened. Amgen site??/.......may not be the best!

I just sent a email to MJFF regarding NYC conference and who can/cannot attend it. I know this is not an issue of great importance when you are looking at a bigger picture of cure for PD, but I like to know. I cannot understand why researchers dont want patients to be at the meeting listening and asking questions. Paula, i was wrong, it is registration not an application.
Debi, (if you are reading this post) I didnt want to ask you questions about the policy of MJFF in an open forum. But if you want to comment on it........thank you.


Thanks
Girija

Gdnf
 

i was fact finding for this reply and found the best citation right here. We can be hopeful about this, not clear when they will start. If it does start soon, i have thought about it, but it will be a small phase I and who knows how to qualify.

anyway, Andy Grove is busy, not sure where or doing what but picture him working on delivery systems.. This is an educated guess.

back to this , NIH involvement. looks impressive. i think it says a lot about GDNF's potential.

http://neurotalk.psychcentral.com/thread81930.html

paula

amgen's GDNF follow up studies
 

here is the website that describes Amgen's continuation of GDNF studies
Just a follow up of the patients, not a new study.
I didnt see any information about the new study.
http://clinicaltrials.gov/ct2/show/r...ease%22&rank=2

Girija

Take a look at this NIH site. It shows over 150 clinical trials for PD that are ongoing or ready to start.


http://clinicaltrials.gov/ct2/result...isease%22&pg=5

I wonder how many would succeed?

girija

Thank you girija and this is where the real money is. Have you ever been to a meeting? Anyone? But people are advocating for us there. A good idea would be [iMHO] for someone to keep an eye on it. the economy? has called for PAN forums to be held every two years instead of annually. This does free up the staff to accomplish more. Katie Hood has a position in NINDS is it? NIH funding is available for business, but i can't talk details on that, not my area. lots of room for verbalizing here at NIH.

paula

Paula,

I havenot looked into PD clinical trials till now. I am actually pleased and shocked to see so many clinical studies are going on and if this is the case, there should have been and hopefully will be a lot of progress.

My only experience in disease related research is in HIV field and I thought the pace of research was slow and the set backs were too many. But looking back at the progress that field made in 25 years since the first case of AIDS was reported, it is remarkable. FIona is absolutely correct in using AIDS activism as an example. AIDS research and drugs came into market so quickly and so much money and effort has gone into finding a vaccine....... this tells me that science can go faster provided there is pressure to do so. I am not saying everything in AIDS field worked and there were no set backs, but to me it seems like an example of how fast science can go from bench to bedside. Whatever scientific, business and social pressures/formulas that worked for AIDS should work for PD too.

Girija

Yes I agree with Fiona too. The HIV movement has numbers and many supporters who were affiliated but not afflicted. They are a good model and breast cancer is too. Numbers have always been a problem for us. Many young onsets are not diagnosed or not telling yet.

paula

Paula, I know that you've been an activist for probably longer than I can imagine, and my mouthing off probably sounds kinda - well, naive comes to my mind. I just want to say that I really appreciate everything you've done, and do, and in my neophyte passion I know you probably know much more than I. Won't stop me from being a loudmouth, but I want you to know I have full respect for you.

That goes for many others of you guys on this board, too. We keep trying, the way we can, when we can.

Fiona,

you have no idea how much encouragemet i can squeeze out of the support expressed in this thread.. i don't consider you naive, but i want to give you the most current information possible before you go chain yourself to a fence. lol

We took out a full page ad in their[Amgen's] hometown a few yrs back....please continue to speak out! The people in this gene therapy[Federoff et al] trial appear to be trustworthy and have excellent experience and backgrounds, some going all the way to pre-amgen gdnf ownership. He just started a company, i was hoping he would be at BIO. I think this is information you should know.

i've heard so many back and forth rumors about Amgen and GDNF, who knows what is going on for sure. But i could make the mistake of getting a DBS, with this GDNF trial right around ]the corner. That's an area where secrecy [ideas are stolen] and not including patients in research meetings is doing the patients a disservice. Why are clinical trials not posted in all doctors offices?

The pD community needs more voices badly..there are many ways to learn the facts. OR nothing will change. And we are all just trying to do what is right.

can anyone answer this? who is doing something to make our lives more comfortable right now? that was the patient rationale throughout the amgen deal - stop and treat - we are suffering and shouldn't be forced to wait for a cure. give us what you have. no, not enough profit, not the right decision for business.

the orgs didn't get us that treatment. so who is responsbile for keeping us safe and for improving our lives?

keep talking fiona, naive doesn't fit anywhere into my impressions of you.


paula

A rant to start the day
 

I'm right now attending a retreat in the Laurel Mountains of western Pennsylvania at a beautiful conference center. About 50 or so PWPs and partners have been here since Friday for a program whose subject is "Living Well With PD," and whose focus this year is "nonmotor symptom of PD." We've heard how the self-help books don't help when they relegate nonmotor symptoms to 3% of content, especially since it has been known that nonmotor symptoms have a greater effect on QOL overall than the motor symptoms. Sleep problems, how to find help for the symptoms that don't interest neurologists, and how PD affects the family have been covered and discussed. I have chatted with PWPs who had never been informed that they should never quit their drugs suddenly--and how to say "no" to a neuro who wants them to do just that--and overheard someone say they could see that some of us need a psychiatrist "but I'm not that crazy yet." (I don't know if she was commenting on the general quality of psychiatrists or of PWPs, LOL.) I raised my hand at one Q&A period and suggested that a NEUROpsychiatrist is the one you want (trained to deal with brain damage). These were just some highlights, hoping you dear readers will get the idea of PWPs and partners grappling with the hard facts they may never have had information about before, or may never have had the courage to face before, but can in this very safe environment.

Here's why I'm posting in this thread: It's up to us, folks. We have very few in the medical community who understand in the way that a speaker at this program understands (Paul Short, PhD, neuropsychologist). We have to take the message to other patients, no matter what else we do, and teach them what we have learned from the sharing on this board all these years. It takes patience to explain that StaLevo has sinemet IN it and is not a new drug, and yes I take Comtan, that's in the StaLevo, too. It's difficult to mention constipation to perfect strangers, too, but there are people who think they're alone with their problem, which doctors other than a neuro are afraid to address because they don't know the PD drugs and the neuros can't see why they should treat something that belongs to the specialty of gastroenterology. We need to help these people, and not with another upbeat glossy newsletter, but with sound information (check out the PDF or MJFF websites) and personal experience that we can all relate to.

Paula and all, where do you think we should go with this? Should we be making speaking engagements if we're able? Writing a book? I was in the GDNF advocates group you mentioned, and I know it wasn't enough.

I'm sure of one thing: we don't need anyone's approval or cooperation or funding to advocate for ourselves and raise a tide of demand like HIV activists. Someone please invent a cure for PD apathy and lack of motivation. Or maybe create an understanding in well people so they'll take up our cause.

I continue to ponder--my greatest gift and my worst flaw.

Jaye

Paula, and all, and especially Jaye, who said this:

Paula and all, where do you think we should go with this? Should we be making speaking engagements if we're able? Writing a book?

I wrote a huge long reply, but it got lost! So this is the short version.......Why not a book, say 20 chapters, addressing all the issues, from the patient perspective, from the people here who have their individual personal and unique take on PD, and who have been writing here eloquently and with great passion for years, and who most certainly have a voice, but only a limited way to be heard. Those with voices but an inability to physically write cold be videoed and transcripts used, it would be something that could be undertaken with the help and support of the orgs (Debi, please read) IT could express all the things that so need to be out there. I can't find the right words today, buit could be done, there is not too much for any one person, and there is a way for it to reach where it needs to go. it would be moving on from the parking lot, out into the world! IF I am not getting this right please shoot me or it down, but I think this is doable - I can hear the voice already!

Lindy :grouphug:

right on
 

Quote:

Originally Posted by Jaye (Post 523099) Here's why I'm posting in this thread: It's up to us, folks. We have very few in the medical community who understand in the way that a speaker at this program understands (Paul Short, PhD, neuropsychologist). We have to take the message to other patients, no matter what else we do, and teach them what we have learned from the sharing on this board all these years. Paula and all, where do you think we should go with this? Should we be making speaking engagements if we're able? Writing a book? I was in the GDNF advocates group you mentioned, and I know it wasn't enough. Jaye

Jaye - I think you are right on! The patient voice needs to be heard. I know that it is beginning to happen, and I encourage all pwp to think about how they can let their voice be heard. For instance, I know that Leonore in NY has spoken to doctors about living with PD - and she has gotten rave reviews.

I think one of the reasons pdplan4life gets such good responses from attendees (after our pdplan4life talks at conferences), is because Sheryl & I are at the podium as People living with Parkinson's disease. I think as pwp we are so used to seeing other people talk about living with Parkinson's - it's strange and unusual to actually hear from people who are living with the disease.

And pwp CAN do it on their own - Sheryl & I do. It isn't easy, but pdplan4life is not on the payroll of pharma or any of the orgs. We do what we do on a shoe-string -- from our personal budgets. And when we speak at conferences, we neither ask for nor accept honoraria, and we ask only that our travel & lodging expenses be covered. I'm proud to say that we have gotten speaking invitations from PD orgs affiliated with both NPF & APDA, as well as from independent regional PD orgs.

We as pwp have many voices - and I encourage others to let their voices be heard in any way they can - speaking, or writing, or whatever other means works for you.

Jean

Suggestion
 

Lindy's idea is a good one. It helps to overcome the problems of getting around and the stress of confrontation.

There are at least two forms of writing that might be in keeping with her suggestion. One would be a first-person opinion or history type approach with a single author. The other could be a joint product of the combined efforts of all PWPs in the form of a Wiki. Perhaps this group could hammer out a table of contents sort of outline to define the structure. Once that was done and a bit of starter text in place, it could be opened to the world at large. The addition of the first-person writings as protected works woven through the wiki could produce a pretty cool finished form. It should have enough uman interest to attract a little publicity if handled well.

This would not be a wiki like wikipedia relating purportedly factual information, but rather more a collective opinion. We have an agenda that we want to get out there and the table of contents outline would be critical. There should be a way that it can morph as needed but only under the control of a steering committee - that's us. Could be interesting.

There is a wiki
 

There is a wiki

http://www.allthingsparkinsons.org/

totally legitimate, founded by several members of this board

It's there; it's ready - embrace it, make it yours!

hello global accelerators..lol,

peg has been trying to talk me into a book, but it's soooo much work. i would need lots of help. We have an action packed history. HOw do others feel about adding a chapter?

jaye, public speaking and talking to doctors are great [and necessary] things to do. i liked your rant.

i'm going to toss this into the hat. like lindy, i have typed it out a few times and lost them to dyskinesia. i should start a new thread.

lizzie from 23andMe got the idea to expand my you tube channel where the videos are to include patient stories. You can film yourself and send it, then i would put it on the you tube playlist. She asked for comments on this new type of research; i was thinking of a specific list and it is short - of things that could be included if you send a short video.

whatever personal info you want to share but would need to include date of dx and years you've had it. don't try to hide your symptoms.

tell your story, and try to relate your feeling s about genetics analysis and online research [mJFF has a new thing going there too] in the story.

or fit it in here - for those of you who are so inclined, make an advocacy statement. Clear, focused, with conviction.

you tube has a ten minute limit on videos. that's probably too long unless you really keep it moving. if you are making an adocacy statement, you may need resources to back you up.

we can have a channel of personal experiences and advocacy statements on you tube.

thanks for conisdering and for this good thread. hope it continues on.
paula

Nice site, but....
 

I'm afraid that we would be lost in the larger picture. The site tries, as the name says, to cover all things. I'm thinking of a site more along the lines of what the others don't cover - medical chicanery, conflict of interest, market manipulation, Amgen, ignorant neuros, etc. Hey, I just thought of a slogan, title, t shirt... "No More Make Nice!" NMMN for short. :D

The point of a wiki is to make it accessible to all. Even if you created a "limited" wiki, by definition, it could be taken over by the world.

The platform is there now, it exists, it is known in the board rooms of the powerful (FOX, PDF), they are paying attention.

Take advantage of it. What's the problem?

Yes we can!!
 

This press release appeared simultaneously with a full-page ad in the hometown paper of both Amgen and its CEO Kevin Shearer in Thousand Oaks, CA. The ad appeared on Sept. 13, 2005, and was framed with photos of about 30 PWP. The press release (much the same words as the ad but without the photos) got a lot of traction in the trade papers and some general daily papers. It wasn't cheap, but when the paper found out it was about Amgen and GDNF they lowered their price for the ad from $10,000 to $2,500. It was an intense effort by the Pipeliners and other committed advocates. It helped keep the conversation alive. Think what we could do with broad patient support and action.

--------------------------------
Parkinson's Patient Advocates Call on Amgen to Move Forward with GDNF Clinical Trials

Sunday's CBS News program "60 Minutes" profiled several courageous Parkinson's patients who volunteered for Amgen, Inc.'s clinical trials of glial cell line-derived neurotrophic factor (GDNF), a promising Parkinson's treatment for which the biotech giant company holds the patent. Today, Tuesday, September 13, 2005, a coalition of grassroots Parkinson's patients and organizations published an open letter to Amgen President and CEO Kevin Sharer in a full-page ad in the Ventura County Star, where Amgen is headquartered, urging him to restart human trials of the growth factor or license it to a company that will.

Clinical trials have shown GDNF may be the first treatment to actually reverse the course of this terrible and presently incurable disease. Yet Amgen abruptly halted its own trials, refusing to allow trial participants or researchers any continued use of GDNF. Without GDNF, patients who had recovered their abilities to walk, garden, drive, eat, read, and work have returned to their wheelchairs and walkers.

"The '60 Minutes' segment casts doubt on Amgen's claims that GDNF is ineffective and unsafe," said the group's spokesperson, Ann Wasson. "And new physical evidence from the autopsy of an earlier trial participant proves that GDNF can regenerate the dopamine-producing cells that Parkinson's patients need, and actually reverse the progress of the disease."

"This is a milestone in Parkinson's research, a legitimate hope grounded in scientific data and observation," stated Ms. Wasson, 48, of Kentucky, diagnosed with Parkinson's at age 37.

"There are more than one million people with Parkinson's across America who are slowly succumbing to this debiltating disease. The next five to ten years will not only see the loss of thousands of Americans to complete immobility and death, but will see even more Americans join the ranks of those suffering from Parkinson's disease without hope," said Paula Wittekind, a patient advocate from Florida, who has established a web-site for neurological advocacy, GrassrootsConnection.com.

Clinical Trial Participant and coalition member Roger Thacker, who was featured in the "60 Minutes" segment, said, "GDNF is a means of hope and help for those who suffer from this cruel disease. It could be the miracle needed to save a generation of patients."

"Time is not a luxury that people with Parkinson's disease can afford," said Rees Jenkins, a North Carolina patient advocate. "Delaying access to promising new treatments can mean the difference between life and death for many patients. Restart human clinical trials on GDNF. Do what is right."

Contact:...

Thank you Greg...As I was reading the many comments in this thread, all I could think of was to post this letter too. Several of us in this thread signed that letter. When the letter was in that newspaper I assumed...niavely I can see now...that there would be some kind of uproar, etc. about the content, but if I recall correctly...so do correct me if I am wrong,Paula and Greg...nothing happened. It was not picked up by any other papers as a point of reference. It was not challenged by Amgen. None of the orgs commented, publicly or privately. Nada! Nothing!

We wrote that letter, sweated and cried over the content...and nothing.
To my knowledge is was virtually ignored by Amgen, just a bunch of ****** off patients who didn't get their cure. How can they understand? How can they indeed!!

I don't post on the board much because I don't feel I have sufficient or credible voice to be heard, but today I am taking that risk and speaking my mind too. I am the silent, rather bright, one in the corner who only comes out when riled and hopes in doing so to not make a fool of myself by stepping into the light. I guess it is the MDD/PTSD person in me that is still in and has been in recovery for far, far too many years. Having said my personal comments in this paragraph, I am NOT looking for sweet and kind reassurances in reply, but just stating fact about me. Overcoming a traumatic past is not easy, it just is.

I few months ago, I watched the Live Strong Cancer Video Campaign on TV...not just on YouTube, where it can be found today...all i could think of was, okay we PWPs need a campaign like that. I think I even asked that question here in NT, and got no replies, or just a couple, but no discussion. I don't see how any more books, although always welcome, can make a big difference. So many are read and then forgotten by the reader. We can write all the articles we want, but they too are soon forgotten.

I am NOT IN ANYWAY putting the Unity Walk down. I have never attended due to cost, but I here the happy comments of those who do and have attended. I do wonder though if Awareness Month, which as with all months of the year shares awareness with several other voices trying to be heard, such as Autism, truly gets people to remember PD and want to know more.

My family thinks the Central Park walk is just cute and sweet. But, then I don't have a family that cares about PD in any way, shape or form. I am waiting, but certainly not holding my breath, to see if my PA family will care enough to join our Gettysburg Walk For Parkinson's in late April 2010.

And PAN was booed, so to speak, on the NPF board a couple of weeks ago, and I did all I could to set the record straight about the Registry, which was at issue. The typical, "I don't want my personal data out there on the NET"...Hello, it is already out there on the Net! I even had a conference with Mary Richards to ensure I had my facts straight before I went back in and attempted to set the record straight about the Registry. But still there is the "PAN does not speak for me" mindset. Heck, just because I am a PAN coordinator, does not mean I agree 100% with the issues they have on the table at any given time. As we all know already, it only takes a small number of voice to get people to believe the negative. This is due to lack of education about what the orgs do...IN FACT...and in this case PAN. Personally, educating the public, and I include the PWPs and caregivers out there too, is paramount. We can't sit back and believe that ll PWPs and caregivers don't also have a misconception of what is going on around them. Every time I speak to a support group about PAN I marvel at the fact that 90% or more, 1) misunderstood, or 2) had no idea there was a PAN.

Parkinson Society Canada (PSC) has this video, but quite frankly I think it would scare anyone who views it who does not know about PD...not educated about PD. To me, it sends a scary message...just my personal opinion.

I know I am not as busy an advocate of PD as I should be, but in January of this year I said that I was "turning over a new leaf" in my role as an advocate. So was, and am doing so, speaking to groups. The one I am MOST excited about is in October when I go to Misericordia University in Dallas PA to speak one or more ancillary medical classrooms of students. Their professor wants them to hear from the "horses mouth" what it means to have PD.

"I teach and specialize in neuroanatomy and brain related disorders. I have begun searching for individuals with Parkinson's to be guest lecturers and come and speak to my students about the disease and their experiences with it. Seeing and hearing someone with a diagnosis makes a far greater impact on my students and makes them far more likely to recognize a disease when they are out practicing."

My hope is that I can make a good enough impression on the students and the professor (and any other classes I speak to that day) that I can garner a letter from him, or something along these lines to get a much firmer foot in the door at Hershey/Penn State, Johns Hopkins Medical and/or Nursing schools to start with. Both are within driving distance from my home.

Heck, I currently work with two LSVT Clinicians who are not educated properly about PD, so their involvement in my support group in Gettysburg has opened their eyes. And it is also obvious to me that they were not taught anything about PD while attending LSVT certification classes, only about LSVT. Having said this, I was impressed in January when one of my LSVT clinicians came to the meeting and showed off the newest MJFF book which was gifted her by her husband at Christmas.

So, I am grateful that I can still type my words and thoughts and that preview and backspace are available, because sadly, I stutter and stammer when I talk all too often...something I hate.

:grouphug: to all. I am stepping down from my soapbox now.

okay, another idea, for next year, WPC, say we took paulas 'book' that she needs help with, chapter topics defined by people here, really looked for the best writers here and elsewhere in the pd world, those who really know their topic or area of specialist knowledge, and got started, posting initially to a wiki but also fishing around for support and sponsorship from the orgs. From initial topics draw out an awareness campaign display for WPC, display boards with text drawn from potential 'book'. This would promote book, wiki, disseminate awareness and involve orgs, medics, pharmas, etc in an engaging way. Nobody would have too much to do, and it would be an open ended project with the prospect of further development. Patient views could be presented in a very non-confrontational way, that nevertheless would have impact. Everything we have proposed here, and in past posts could be looked at, from the alternative thinking in terms of care, exercise, diet and awareness, to the pd experience, to the patients wish for treament that addresses their needs, and the potential value of patient involvement in decision making................. just trying to join th dots........

Lindy

Also...yes, I know I said I was done...We KNOW that the pharma industry is wrought with greed, graft...seeing only the profit margin, etc. etc. I have posted several articles over the past year or so about how much CEO of pharma's make each year

It is no different than the fact that pesticides and toxins cause most of us to have PD. I for one do not expect that chemical industry, or the governments of the world, to do anything about it. There too is graft and profit margins. It would be like the U.S. federal government telling the auto industry that they need to shut down, just as any small business would do, because of bankruptcy. The backbone of the American economy would be crippled beyond repair.

I do not say this to cause a political discussion...just using these two industries to make a statement in fact.

My son in law and I were just talking about this in his kitchen yesterday. He is an English professor at Penn State and has authored several books.

knowledge is power
 

carolyn, you bring up a point that i have been thinking about including here perfectly. i think the full page article did have an effect. but, like so many other things that take place with research, we aren't told about it.

can you imagine what we don't know? People have used our ideas and have heard us. There are so many social factors involved as well. With MJFF, you have celebrity and all that goes with it. With all of the orgs, there is the medical community and pharmas, who views patients as "subjects".

It's ranking by wealth. But what entitles the orgs and scientists to make all the decisions? As rick and girija were discussing, clinical trials never get enough recruitment and seem to just go away. We can't have a treatment if we never know about the trials. Then problems with trials were uncovered.

Knowledge is power. If you don't have money, knowledge is the next best thing. We are being denied knowledge by virtually everyone involved in solving our illness. It's getting better. I think we would understand the financial reasons for certain decisions, if we had all of the information. Being kept in the dark, with little feedback, is quite effective in maintaining control and it fosters guessing and paranoia.

But carolyn, you are right, the ad was ignored by the key players, and the effects were kept from us. But we've gotten enough feedback to know that the effects were indeed felt. Gregw is also correct in saying that during that time period, we did get public support, even from the Lancet.

But..then ...we, too, have our own list to work on. like convincing people that in person we don't always whine....lol [speaking for myself]
paula

Agree with Carolyn
 

"Personally, educating the public, and I include the PWPs and caregivers out there too, is paramount. We can't sit back and believe that ll PWPs and caregivers don't also have a misconception of what is going on around them. Every time I speak to a support group about PAN I marvel at the fact that 90% or more, 1) misunderstood, or 2) had no idea there was a PAN."

This is my experience, too, Carolyn, although support group talks = 1 and JHU talks/being interviewed by doctors number 2 or 3, and I really did make a complete idiot of myself the summer of the GDNF action. (It was mostly due to a slam-dunk drug change that i should have refused.)

As I said in post #26, above, we can do a lot, perhaps enough, by ourselves, and we can teach other PWP with solid information from the best websites and the most factual information here.

We need to become comfortable with talking about nonmotor symptoms and about depressed people getting proper medical attention.

And I believe that we must advocate for ourselves in the examining room and the surgical suite and equip others to gracefully do the same. The voice of the patient must be heard everywhere patients are found, so there is a powerful groundswell.

Jaye

Paula's book
 

Paula buddy,

You have always been so good about catching me up about what's going on. Not in the last two or so years, since you've had more trouble typing, but before that, I have, due to laziness, much of our correspondence on various computers. Seems like that would provide some material, and I'm willing to edit what's there, like take my stupid comments out of it.

Jaye

P.S. I have an idea for writing and it's too soon to share. I'm also not too pleasant about team writing, but if I have nudged anyone to do so, hooray!

Jaye again

Thank you Jaye, and lindy, i must admit that without a treatment intervention, i am not really capable of writing a book. i do mean it unfortunately, when i say it would take help. As Dennis Hopper says, "we need a plan." i must add that lindy presented a plan, sorry, that's how short my memory is, and one that tries to include others' ideas.

We do have a story. you are very appreciated.

paula