Just to strongly suggest one read the article Carey referenced that appeared in the NYTimes concerning cancer research--IMHO,in many many ways, (without the multi billions of $$$ thrown at cancer research) it parallels what is happening in all scientific research which the NIH finances....

"...One major impediment, scientists agree, is the grant system itself. It has become a sort of jobs program, a way to keep research laboratories going year after year with the understanding that the focus will be on small projects unlikely to take significant steps toward curing cancer..."

http://www.nytimes.com/2009/06/28/he...r.html?_r=1&hp

From stitcher's article on another cognitive discovery:

"What we are seeing in recently diagnosed patients is that prior to being put on any medications, they exhibit a selective impairment in their ability to learn from positive (rewarding) outcomes while their sensitivity to learning from negative (or punishing) outcomes is normal,” says Gluck, director of Rutgers’ Center for Collaborative Research on Cognition and Parkinson's Disease."

Then, when agonists are introduced, the opposite becomes true, PWP become impaired in learning from negative rewards, so they gamble, you know the list. They will ignore the negative consequences and go wth the winning moments.

i think this is fascinating and in the back of my mind, i post adv pd with the hope that something will be learned. If ever there was a place to observe cognition in pwp it's right here.

But it is depressing and i can take suggestions well put, i do go on and on, but spiral of death was a bit mean spirited. i don't think i would say that to anyone, basically, in the advanced stage. the quote] i engaged circular thinking [ok i accept that].i am at the choking and falling stage, very thin, and don't know how well i'd handle the swine flu. But the reference to death swirl, combined wth the comment that it's easier to stay away wasn't delivered in the spirit of helping the first time and i appreciate carey's xplanation, easier to stay away combined with death swirl were critical without explanation. so it's a public forum, you have a right to do that. But - are the circular complaints resolved?

I hope this is viewed as a conversation because i am not angry. this is aa fixable issue that IMHO can be nipped in the bud....more important stuff t0 deal with.

enjoying debate and constructive criticism, I've learned to accept and apply from it

All are welcome and to that i would add all have feellings.

so we learn from each other. i posted in this thread because an idea came to mind and i haven't compared it to girija's yet so it might be simiilar and i don't mean to take anything away from your suggestion girija....let's see how much we think alike because i know your idea involved the book and poster for the wpc and so does mine.

Stitcher's article, if accurate, explains some of our basic personal responses and behaviors.both before and after begining medication.


It explains why we are unable to see the rewards coming . They still see negative consequences. so they are still under control but maybe depressed from not perceiving rewards.

Then an agonist is introduced and now our ability concerning consequences reverses and we can't pick up on negative consequences but seek rewards. The easiest example to demonstrate this is gambling but then there are exeptions like me. Compulsive poster
So i say i'm getting off the computer, even write to the mods and ask them to delete my account so i won't be tempted. Chemar is a patient, calm lady. Ok so that's my story about trying to get off the boards with depressing posts. Altho i still think that all stages of pd still have things to teach the researchers.But i'll try to curtail them and that brought me to an idea.

now the idea and the words just flow after a day of sinemet [i'm down to 2 hr for the most part in paradise lost and still awake.

have you thought of doing a study of sorts, for the book and then condensed in the poster. Linda herman offered an update of her successful book "When Parkinson's Strikes Early", which fits so well with what you are doing. She isn't going to write it tho. and is a focused perfectionist, tough act to follow but i know you are up to it and she will consult. her book is the online commuity ten, maybe 11 years ago. You could do a study of some sort to demonstrate in and of itself that a major change is the degree to which patients can make what we have done recorded and analyzed. i see a poster with nice looking charts and graphs demonstrating comparisons of say what percentage of posts in _ yr intervals were about alternative med, working to the present. Then talk about the people who brought on the chahge. Maybe you could include it like a question other examples could be how stem cell research affected the forumto the present, how fighting is reduced - GREATLY, and yes, cognitive impairments. gee the questions are endless but i would limit it to major themes. Tell the story through the posts and interviews, but get some science out of it. you could add informatiion about the topic of the questions, but limit it to major interesting, even innovative issues. or just ignore this and that's fine too.

now u will probably say that is what u already planned lol

ok exhausted
paula

Paula - I interpreted KC's reference to "death spiral" to be a comment on the conversation about advocacy - not people's lives - because he was commenting on my "circular" reference, which was about the conversation not going anywhere.

The reason I've been staying away is not because of people talking about advanced PD, but because the conversation, among all of us, not only in this thread, but in every thread recently about advocacy, had become meandering not purposeful.

I enjoy conversations among PWP when discussing our lives and how PwP live with it, and that certainly informs our disscusions on advocacy. But lately I've been frustrated that the advocacy conversations veer away from finding solutions and dissolve into a rehash of the past or a reiteration of our problems and complaints.

"Death spiral" was a good metaphor - it had nothing to do with peoples' lives spinning downward, but now that you bring it up, I can see how you made that leap. But I really don't think that it was intended that way.

ok i appreciate the reply, am always looking for tangible ways to keep moving. a little clarification goes a long way..thanks.

paula