Canadians don't have as long to wait - the European shortage is through 2011. This will cause more selling of DBS and stalevo possibly. But i don't know anyone who hasn't eventually had mirapex wear off in efficacy. They couldn't take l dopa away for good...we would die of the DAWS only sinemet doesn't have a new name for it's withdrawal death or significant life threatening dependency. Hey let's see if we can name it......how about something real original like CLAWS? [C- arbidopa ; L - levodopa ; A for the end of the two previous words; W - withdrawal ; S - symptoms.

I think we should get to name something. It's what we would use to try to get some if we were denied...our claws.

We have to make noise, lots of it. Violet Green sent a story about two MD protestors who got arrested for something outside if where Obama was speaking..i skimmed it and don't know the details until I read it again. Now that is my kind of medical doctor.

I don't know how to retaliate other than to say we aren't going to participate in trials. How else do we really get their attention? Tell them no because trials can't be trusted and we'll stick with what we've got for treatments. For the advanced, there will nursing homes and IV drips once we start breaking bones.

Our bandido Bob is currently in a skilled nursing home recovering from a fall and a crushed elbow. He will be there for 3 months and doesn't know if or when he will be able to go home. Bob is a vibrant man with a keen mind and we miss him terribly at the book meetings. I need to call him and make sure they aren't giving him cholinesterase inhibitors with an anticholinergic. He is 78 but hardly demented.

regarding pharma:

The hard part is we are living in a fallen world. Business practices rule, which means money rules. Money is the root of all evil. It's not going to change. Pharma controls our foundations as well, which is why using patients is so sparing and limited. The heads of foundations are paid hundreds of thousands of dollars and control the research without patients. what do we have to show for it ?

Who cares? moral code has been irreparably compromised.

we must keep noisy; don't be afraid....like larry j said all the time,
"I fall down, I get back up. I fall down again, and get back up again.

Ignore the competition among foundations and rejection of patient involvement. We have to get past that, do the best we can with the orgs in which we are involved, but don't look for them to let you interact with actual research design.

We are going to get there on our own thru exposure of corrupt practices. Dr. Tony Lang and gang recently published an article and quoted the PD Pipeline Database as their first resource. Linda H. is the gatekeeper.
http://www.pdpipeline.org

Bob Dawson, did you know that Amgen has licensed their GDNF for a convection enhanced delivery? Originally, we heard that Amgen was going to provide GDNF for gene therapy and I couldn't understand how it became a gene. It hasn't come up in America yet .....amgen is getting a cut on it and we are assuming that someone finally came up with a suitable delivery system

The worry is that they will use people in early stages only in these gdnf trials, which is where the market is and increased chances of success? Are they morally obligated to provide treatments for all pwp....or do the authors of the fallen world have that in control and see the benefit of babyboomers dying off, not living longer.

just to show how communication should never be assumed, a friend in the Freed fetal study that recently was the subject of these two PDOR posts ad their corresponding articles, came to visit and hadn't yet heard about the recent findings and articles.
http://www.pdonlineresearch.org/resp...and-colleagues

http://www.pdonlineresearch.org/news...inical-benefit

When she got back to Canada, she wrote to Dr. Freed, who was the lead investigator of the study, and he responded with , "what have you heard?'

Lynda has much to offer through some intensive neuro imaging. She has subequently had a DBS , and they have difficulty calibrating her; are her fetal cells making her less in need of higher calibrations? Are they still there?

Dr. Freed said he had lots of positive data but didn't anyone tell him his study was being re-evaluated? He heard it from patients who learned it thru neurotalk posters and pd pipeliner emails

i feel beyond urgency, but am going down fighting for wrongs to be corrected for my family to not have to repeat any of this. Negotiating thru life without getting poisoned is tricky business. The same people who make the poisons, make medicines.....and have those who should be caring about us in their pockets.