Trying to see the whole picture with activism and the community, and of course, want to keep it moving. I'm writing this because no one else has and i don't have the time not to write it. I look forward to a day where, if we have to be here, any number of posters would write it or their version of possible solutions to the elephant in our living room. It's easier to criticize, blame, and accuse than it is to solve. Solving involves taking risks with your thoughts and emotions.

i am fairly sure I am viewed as a troublemaker by some in the community, crazy by others and it's time to challenge that and issue a challenge of my own to patients, as well as orgs. I am not sure if carey is still using her signature line about having to risk being [hated?] - some such strong language - i should look it up- well being hated doesn't stop me....

But pd will stop me. I will be lucky to be able to travel to the WPC. I may or may not even be alive. This is true of all of us of course, but I'm referring to death by Parkinson and I'm not looking for sympathy - i'm looking for understanding and help

i would appreciate feedback on this view of the pd community as i see it.

There are two paradigms that we want to be accepted. paradigms are pretty heavy changes to expect but i do....we've asked long enough. Here's what we expect as patients:

we want to be involved in the decision making and carrying out of research agendas. this is the infamous table at which we want to sit and all clinical trials don't have to be about medicine. Quality of life issues and equipment via clinical trial could be increased and maybe that is happening and i'm not aware. just recruiting and participating is not enough and doesn't fill up the trials. we need ownership and to have value. this is referred tp by some as 'getting too close to the patient" . I don't see much danger of that happening.

We need to have equal footing, same level, especially online. There's the paradigm. Medical community, research community and industry are expected to include patients and it's been talked about and ignored long enough.

That's what I think was happening in the accelerator thread. Years of feeling like our lives weren't in the hands of anyone who is looking out for our interests. Debi, i'm asking you to recognize what happened and come back because the second paradigm you are expecting from us.

We are being asked to surrender our DNA to people and to put all of our medical records online. We are being asked to be a part of "changing the face of medical research." Some of us have already helped some. Perry Cohen is working tirelessly on both paradigms but we mustn't say the word pipeliners. Now I am thinking that this two way street may be conditional. However, i know it was left at an awkward place for you to just carry on. So i'm offering a solution and just asking you to come back, am shamelessly recalling your salary figure and also thinking that even the arrogance that must be forgven of a celebrity who just can't do it all should not take precedence over the possible progress that could occur from communication here. You are well and getting paid. I am sure we appear ungrateful, not this time. Can you accept that?


Your next research project, and this one with 23adnMe too, as well as any registry, involves flushing thousands of newly diagnosed out of the closet. i stayed in that closet for 10 years. They aren't just going to walk out. you need a movie or a documetary or something on a grand scale that tell about people who have suffered and died due to pipeline clogging, greed, poor decision making, and on and on to get young people to come out of that closet. i hated going to my neuro because i had to talk about it. i even had a weird smell that i swear accompained this state of being. i was completely unaware of anything parkinson until i went online.

the forum has decided to write the book and i think they should, negating the request [which i am certain would have been denied had you replied but i misbehaved and made it even easier to just ignore the request. How Freudian, but indicative that my desire to write that book has expired. However, it's important for me to say and sorry if it's a repeat, that going online and finding other pwp was exciting by itself. But nothing could have prepared us for a mega star dropping in on our lives, As Tom pointed out, when something grabs you like that and you are inspired, you want more. That was our reality and telling anecdotal stories in here may just inspire someone else, but no book for me.

That should remove any stumbling block that i can think of. What are you thinking about all of this and anyone else with thoughts? i do not like reality shows and never watched one. But i think keeping our posts public is, for patients, the only thing that truly protects them.


Patients, you aren't all advocates and you aren't all cut out for the forum. But those of us that are truly trying to do this need your understanding at the very least. I am going to say this one time and what you do with it is your business. Criticizing the orgs, should be accompanied with follow up that includes action to make it better. The patient community is quite fractured and not working together enough. The groups that have been successful in bringing about change are criticized and not acknowledged. Agendas everywhere but how many help people, actually help people? That's a question, not a criticism. To perhaps ask yourself.

ok but i'm just egotistic, a crazy troublemaker? i'm not crazy, i just look crazy. if i had even half an ego i wouldn't take the crap dished out in here sometimes. Troublemaking is debatable. ...it being so rewarding and all.

let's get real and demand that these paradigms be focused upon.
paula

I think this is right on the money, Paula, and started tapping out a huge response, but I don't want to dilute the power of your ideas before other people respond (not that I have that ability, but I've said lots in other threads and I think it best not to distract from what you have put out there.)

So I will wait a little while.

Fiona

Thanks for thinking about potential poster paranoia fiona, very thoughtful/and thanks back to deja vuu, advocate in training.

paula

What is the criteria to be "cut out for the forum?"

Self defined. They are uncomfortable with confrontation and just shun away from it. It's their decision.....and i'm glad you asked for the clarification.
psula

just a reminder that this forum is for *all* members, nomatter how they choose to participate, provided that their participation is within our guidelines

we have many members who read and post infrequently and others who are more vocal

all are equally part of this community and just because some are less vocal does not invalidate their contributions

ok my fault and needing help with the language; i do need that pointed
out to me; it's not intentional but rather clueless. so i'll try to avoid those gaffes.

thank you,
paula

From a gut level, sometimes I avoid the forum for a day or a few days just because I don't want Parkinson's Disease to be my whole life. Activism is necessary, and 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, IMNSHO [in my not-so-humble opinion]. Everyone else lies between the recluse and you, dear Paula. [EDIT by Jaye: the person I describe as "recluse" has been described to me by friends in research. They tell me that many people hear the PD diagnosis and go home and stare at the wall for the next 25 years. I have come to think of them as a type, but this is sloppy thinking, and I thank Carolyn who reminded me with her post below. I believe that most people do what they can. I apologize for making it sound like the "recluses" are intentionally holding back anyone.]

Please allow some time for people to think it through and respond. I know you know that we aren't all sitting by our computers and having a reall-time conversation.

I have just read this thread and already can't remember what you said the new paradigms are supposed to be. Since we're gutting our kitchen this weekend, it'll be a while before I can reread, reflect and respond. Please don't think I don't care. I'm still in a research study or two.

By the way, in a casual conversation with a health care professional, we discussed the notion that PD has only motor symptoms, and I was informed that old Dr. Parkinson described deep despair and other neuropsychiatric effects, but that MJFF has been stuck on motor symptoms and only recently has expanded to improving the assessment of depression and anxiety in PD.

Also interesting: as one recent journal comment put it, "Agonist or levodopa for Parkinson disease? Ultimately, it doesn't matter; neither is good enough."*

Jaye

Quote:

* Neurology. 2009 Jun 16;72(24):2137; author reply 2137-8. Links Comment on: Neurology. 2008 Aug 12;71(7):470-1. Agonist or levodopa for Parkinson disease? Ultimately, it doesn't matter; neither is good enough. Montgomery EB Jr. PMID: 19528526 [PubMed - in process]

Let me just say, we welcome people here at NeuroTalk (NT) for whatever they need -- emotional support, information, advocacy, you name it. We do not discriminate based upon need.

Advocacy is an important part of diseases like Parkinson's. But it is not the only reason to be a member of a community such as this, nor do I think it is the primary reason. A lot of people have little interest in advocacy, and I think we need to respect that.

But there is room for all here -- people who rabble-rouse(!), people who participate and offer their support and stories, people who just read and never post (most of our members!), who gain something just by reading other people's comments and experiences. I would only ask that members respect one another and their reasons for being a member here, and not demand something that some of us just can't give.

Thank you for listening to my two cents...
DocJohn

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