Precise and Spot On!! We want, deserve and demand a cure.

They gather in glasgow in 15 months time, then not again for two years. From an american perspective it may not seem the best place to make a pitch, but it is an international event, money and voices will go further and press coverage too.

'If we are going to get the facts out to the patient, org, research, and pharma communities, we will need to find ways to make very little money go as far as possible. '

Lindy,

You are absolutely right. An action at the WPC would get attention and press. But it would have to be an ACT-UP kind of action. I am on the patient and government relations committees for the 2010 WPC, and we have had a huge struggle just trying to keep patients able to attend "scientific" sessions. The leading neuros in the US, including last year's President of the AAN, have fought us tooth and nail.

The outcome of this "segregation" fight is still in doubt. The above-mentioned neuro was lambasted by a GDNF patient and his spouse during a 2006 WPC session (he was an investigator in the Amgen GDNF clinical trials), and he walked out of the session and is determined this time to keep patients in the "play pens" where they belong. His chief supporter in the battle against the patients is a prominent neuro who, court records reveal, has taken $2.7 million from the manganese industry to testify against manganese mine-workers (including ten miners in South Africa) who filed workers comp claims alleging that exposure to manganese contributed to their Parkinsonism.

So we have a tough row to hoe. But if anybody is going to do it, it will have to be folks like you and me and the members of this site.

Best,

Greg

ok fiona, can you title your dance films that you sent and may I upload them to my playlist on You Tube? prfect for the "I Used to .....
part of the video. Then you tell your story and third, make your advocacy statement,

and reallly to all :

it's not hard.. try to make the effort. we need to meet and talk....via you tube, it's your 5 min. use it if you can please.

it means you might have to go thru the box of mixed up cables and cords. find the video camera battery charger, find the battery. update your software. find the cord that connects your camera and computer and relearn how to download and send it. they make it pretty easy and if you have a question, just type the whole question into t he google search box. you'll get to the answer.

did anyone else see google CEO eric schmidtt[?} dunno sp sorry - 0n fox and cnn the other day? he said our searches are very primitive and he foresees the future computers to be able to answer the question. "What should I do tomorrow?" he also says our televisions are stupid. rom there he moved onto mental telepathy and oomputers.i'm pretty sure they are different form anyone we've worked with so far.but he is google, not 23andME. i wonder how closely they are involved? what a godsend to our community. please send in your marching words for a year's time. And put it on ytou tube. if you meet goal early, set another one.

there will be no prizes. the goal itself should be important enough to be a prize.

i hope sergey doesn't get it. He has been handed an opprtunity. now it's making all the right connections. and our participation will help to bring down the cost of the entire genome/


Wyy are orgs not paying for genome testing for advanced pd patien6s. it could save them and avoid who knows how much time and paperwork. sitting in paris instead? now that makes me mad.


i think the future should be presented here, not the past. but if i can find m saved chatswith Mike Fox. i could write some comedy. i could sell the book and donate all proceeds to FOX foundation. think about it debi, i've asked before but that was long ago or when i was living alone and wondering what to do with myself. needed a new project.but it would have been about me. i was not where i am now. now i could write some funny entries and work in other things behind the scenes with a clear pictu re about what this is/ family hasn't a thing to worry about. mike spoke of them online just as he does today, how he loved and talked of Sam. His twins were just babies, and of course esme was a....place?


\the same affection he does to this day. he engaged in the same questions , only intently and nightly,as any other newly out of the closet patient that could finally talk about it. i was still in the closet at the time] this was a very nice, popular chat...big white screen. Could lurk without signing in.. could have multiple names.....there are so many amusing stories .....lots of laughter, pd seemed way off - no more than a low distant rumble on the horizon. Then came the cure in 5 yrs line that we completely bought into.

so many funny stories. how he met greg wasson.....yes it all comes back and it was fun . i wonder how you measure inspiration....maybe that's what is missing in my protocol.

spent the last few days with my whole family. both daugters, husband,grandson. it was so calm, i am still pretty calm today. i just may settle down from six years [of separation from husband]and raising nathan from infancy and feel better. eating more.

is there way to be interactive with the right equipment Equipping us, hey imagine this, with the appropriate adaptions for our disabilities because you know this is real work and many are getting paid for and it's more honest.

how about including alzheimers? and who else?ALS? if you want numbers, you need to strike now; baby boomers need to be led. they are factioned off and pitted against each other. How do things get so backwards? let's get any neuro psychiatric illness that could benifit. They are working on many molecules , they are nmbered, and probably just as many delivery systems.

we don't have to choose between book. blog, video , journalism , march on the caitol>
do as few or as many as you like.

paula

saving spiritual post for a blog, where it's legal.

gary and bob, i hope you choose to contine with your personal videos.

you're serious, that's the scary part. he's a good neuroscientist, but wasn't watching. no one saw us coming. we should not disrupt, but the hypocracy in suggesting we shouldn't be in there for bad behavior is ridiculous.

paula

Paula, I do not know all this story, but have heard a little before tonight, specifically as a 'hope', not mine, that there would be no replay this time round. Your use of 'we' is interesting, especially in the context of 'bad behaviour' - the ensuing bid for exclusion of patients from the scientific table to be played out again on an international stage........... thats a very heavy punishment for the offence.

WOW! I skip reading neurotalk for a weekend and there is so much going on> A revolution in the making! Since I dont know much about writing books, or anything else, I will stick to what I can contribute. This is in response to Greg's post about patient participation in conferences:
I wonder what this neurologist/neuro surgeon's (who doesnt want patient participatioN in scientific conferences) reaction would be if PWPs like me get into the conferences and ask questions as a patient not as "one of them".
I fail to understand the logic behind these decisions to keep patients out of the conferences. If these conferences are sponsored by public funds (NIH), can they bar public from attending? We have to break this barrier just as AIDS patients did. Looking back at all the AIDS conferences I attended where patients were participating, patients were there, some silent, some vocal and a few angry over the way clinical trials were done. The bottom line is: there was a human face and emotions attached to the term "subject" repeatedly used in these meetings/ As Fiona and others commented, it was not be done by being nice. I firmly believe that patient activism made all the difference to finding drugs for AIDS. I wish I could find some of those activists now/

Thanks. If I can be of any help to any of you, just let me know

Girija

If it's possible, I would very much like to avoid the confrontational approach of ACT-UP, or even a repeat of the incident that occurred at the 2006 WPC. I am not yet ready to start throwing plastic bags of blood, etc. at doctors and scientists.

I have seen some real change in two of the national organizations in the last couple of years, PAN and PDF. After years of struggle we have two grassroots seats on the PAN board (not enough but a start), as well as a Senior Advisors Committee and a Policy Committee at PAN, both made up grassroots advocates. These committees meet frequently and are consulted on all major policy issues. Consensus between committee members and senior staff has been achieved (sometimes not without great effort) on every issue that these committees have considered. Trust has been built up brick by brick, and I don't want to see that destroyed. Likewise, PDF now has a functioning Parkinson's Patients Advisory Committee that is finally serving as something more than window dressing.

MJFF, on the other hand, has a "patients advisory committee" that to my mind has only two members whose credentials as PD advocates extend beyond their ability to sign their names on big checks to MJFF. Rich, sick, and clueless. APDA and NPF I couldn't tell you beyond the fact that APDA's Chief Scientific Advisor is a veterinarian (yes, as in dogs and cats). That may or may not say something about their attitude towards human patients.

But it is easy to criticize the orgs as insensitive to patients and their needs. I know, having done a fair share of it myself. We as patients share some of the blame for having been largely ignored by the "patient organizations," because we haven't acted in large numbers to demand their attention. The number of PWP's that are actively engaged with the orgs, even doing something as simple as expressing an opinion in an email, is shockingly small. As girlja says, we must put more real human faces at conferences, meetings, and in emails and phone calls to "our" orgs, as well as at "science" confabs. Most do not formally exclude patients. They don't have to because we generally don't show up in appreciable numbers (the fact that MJFF HAS excluded patients on several occasions is deplorable).

So I think what we must do now is act, rather than Act-Up. And that is what I find so encouraging about this thread. I sense that folks are ready to act, and act again, and again, until we are acting in numbers too big to be ignored. To get enough real seats at the table we can't wait for an invitation. We must get the wood, make the chairs, and shove them forward to the table. Then and only then will we have a place to sit.

And with that I am going to get out of my chair and find my way to bed.

Best,

Greg

In St. Paul, and was also amazed at how little many patients and caregivers were informed about DBS. The meeting starts with a topic (DBS my first time) and only positive points were brought out. I asked if I could talk of my experience, and suspect I will not be given the same opportunity in the future.

I started by saying it may have saved my life. I then started to talk about the downside of the surgery. That if you had it too soon in life, you may need tests that you cannot have if you have a DBS in your brain to diagnose illnesses which come with normal aging. IE, MRI, diathermy, etc. The "professionals" (a neurologist and Nurse) told me I was wrong about the MRI and said it could be done if the right settings were used. I also mentioned the effect on speech, the adverse effect on memory and mood which is why the psychological testing was done. Many people at the meeting thought I knew more than the doctors. It wasn't what the doctor's didn't know, as I had them confirm each of my points, but what they selectively chose to tell the patients.

When I was first diagnosed, secondary effects (where did that term show up?) were intially denied by the neurologist with a, "I never heard of any of my patients reporting that." For years I fought to prove that Sinemet did not work during the week before my mensus cycle. The only research that had been done was a questionaire of a limited number of female yopd, which said there was no indication of a link. When I e-mailed the researcher, she said she believed I was right, but the only funding for estrogen was to allow a questionaire.

I question the term, "secondary effects." If It is not the primary symptom when first diagnosed, it does not make it any less life altering when it occurs further down the line of the progression of the disease.

As for writing a book, I have done that, and gave the disk to a friend who is an editor. Shortly after, my computer crashed and I just can't try again. The format of my book was chronnological. The friend I gave the disk to is out of the country now and that was a year ago. Perhaps it would make more sence to write an article for a conservative magazine such as Readers Digest which is widely read. A day in the life of an advanced PD patient.

Wow, so much said and so much to say! I am deeply moved by people's invovlement and passion. I really thank each of you for speaking.

Greg, didn't mean to minimize what's already been done about the Amgen publicity material. I know that a NY Times Ad would be unbelievably expensive, so I was being a little specious, but trying to think big because sometimes it's easier to raise $1million than $100,000. Or so they say. BUT getting it on the organization's websites would be incredible - and yes, I can well imagine that donor sensitivity is an issue. It's kind of the issue. But there may be more that can be done there, or at least force some conversations to be opened.

I'm not quite ready to throw bags of blood at anyone either, although I am ready to be confrontational. It's helpful to read about the inner goings on of trying to get patients to be included in the conferences...why am I surprised that certain illustrious neurologists with truly despicable ties to industry are machinators in the whole thing. But the interests of US patients as well as international people I think would be served by a strong patient presence of some kind at the Glasgow conference.

It's hard to act alone. That's why I think it's maybe time for a real patients consortium that isn't afraid of saying things that will bring discomfort. That way we could say to our doctors directly, "I'm part of this group of Extremely Concerned Patients, and we want to request your advice and participation on how we approach hospitals to educate the nursing staff about our needs. ASAP." And using the royal "we," and having something we could put in their hands at the same moment, might make that act possible for many of us.

Rick, you totally broke my heart with your written piece - it is so beautifully and horrifyingly written, and really totally nails it...and I think it would be a reallly strong act to start distributing something like that at events or support groups or whatever...The only thing is, I think it's important to also look to the positive side of things - that we as united patients could accomplish a lot, that there are things on the sidelines like GDNF which might be terrific if only we could exert enough pressure to get them developed and fast-tracked, and there are under-emphasized and under-developed aspects of treatment like movement therapies which are and can be enormously helpful - so to also emphasize some of the positive resources that the docs won't tell them about, at the same time as reinforcing the absolute necessity for pushing for change or these things won't add up to enough help.

One thing about the AIDS activists though that I've been realizing, is that they didn't wind up getting a cure. They got a way to stop dying and even have manageable lives. That's still better than what we have, but it also conveniently makes them a continual source of income, much better than if everyone kept dying young. So, I hate to say it, but the financial interests that exist were actually fed by their activism, rather than the other way around. And whose to say what would have happened if that was not the case?

Another issue is that while many of us have similar spirits, we might not all agree on the agenda items, so not sure how to deal with that. Maybe agree on a few, and try and get those done. For instance, Paula, much as I support you personally and hence the way you see the best work being done, for my own personal reasons I am not a big champion of genetic analysis, and have no interest in it for myself. That would make creating a strong video of advocacy for that particular issue difficult for me - plus while it's totally ok with me if you use the dance footage, it's not entirely correct to say that it is in my past at this point...I'm still doing it!

There were many points in what many people said that I think are very worth discussion and addressing. I have to stop for now but will continue later.