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

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

Quote:

Originally Posted by Jaye 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

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

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