paula_w

haha.....good one SCR.

paula

__________________
paula
"I've never had advanced PD before."
"Time is not neutral for those who have pd and for those who will get it."

Jaye

I was in for my regular checkup on April 1, nothing different except the cards showing on-off-dyskinesia for two days in the week prior. As it happened I was off a LOT those two days, but am better now since my neuro added Amantadine. I would certainly miss the KW6002 if I couldn't have it any more. I think I'm on my fourth year of it. My Hohn and Yaar has gone from 3.5 back to as low as 2.0.

The first thing the PI said to me when describing the study was that I might have to go off the drug at some point. I knew it from the first and I signed the paper that said I accepted that. There's never a convenient time to go off anything.

Anyhow, I did it for Science and for my fellow PWPs. No foolin'.

Jaye

Bob Dawson

I first heard about Amgen early in 2009. I was in the waiting room of my neurologist:
"...A 70-year-old woman in the waiting room of a hospital in Montréal talked about the Amgen fiasco, and she said “it was the day when they decided to kill the monkeys and send the Parkinson’s patients home to die.”
My website was about Parkinson's and dancing; but Chapter 21 is completely different. I will not let the memory of what happened disappear. I wrote this but I don't know who to tell about it because the chapter is not about dancing. Right now I am alone with this - I found your site by googling around. The software on this site will not allow me to post a link, so just google something like Parkinson's dance Dawson Chapter 21 and you should be able to find it. It's an on-line book.
If anyone is still interested please pass it on or help me find e-mail lists to send it to. I don't expect any reaction - it seems to be a dead issue, but when I found out about it I was very angry, and us Newbies will keep the story going so that the great-grandchildren of the volunteers will know what happened.
Bob Dawson
And this site will not take my e-mail address, or possibly Bill Gates is once again conspiring against me, so you can e-mail me**
Maybe someone still follows this or could update me or something; right now I am alone with it and it makes me boil over.

Jaye

Here's a link to your blog. Lots to read there. Stick with us, please. Isolation seldom helps any of us.

http://parkinsonsdance.blogspot.com/...r-21_3946.html

Lots to read here, too. By the time you've read everything linked above by Stitcher and others, you will definitely know you're not alone.

Stories, anyone? How about Steve meeting someone from England?

Jaye

paula_w

bob,

I am one of those acknowledged by Nick in his book because i happened to be in the thick of the amgen debacle. We could match nick's book with another of our own experiences. Remembering exactly when and where i was, just like when jFK was shot, I realized one morning that my generation would not be cured, but much worse - realized that a treament would not be produced unless it was a silver bullet. Canceling gdnf showed the disconnect between helping patients and making money. IF it can't beat or match sinemet in relieving symptoms, will they even produce it? GDNF should be available on the market today.


I've had pd for 20 years and take sinemet every 2 hours. By the end of each day i'm a mess pumped full of all that sinemet. It's the meds that very well might kill us.

But put on music with a beat and i can dance for hours and i do a pretty mean hoola hoop too. dancing is to a pwp like singing is for a stutterer.

say hello to anuket for me. first time i heard her sing and you have a good blog!
read more here: www.pdpipeline.org

here's Andy: http://pdpipeline.org/andygrove/agrove1.htm

video of Andy:
http://pdpipeline.org/andygrove/agrove7.htm

paula

__________________
paula
"I've never had advanced PD before."
"Time is not neutral for those who have pd and for those who will get it."

Bob Dawson

Wow and thank you ! And wow!
An entire universe I did not know existed
It will take me some time to read
and I am too angry to read much
I will calm down in a few days
but I will not be silent
thank you, y'all

LindaH

Bob,

If you haven’t found it yet, the Parkinson Pipeline Project has been compiling informatiom about the GDNF saga since the trial halt in 2004. Many pipeline members joined with a grass rootsl coalition of PWP advocates, , trial paeticipants and their familkies both in the US and the UK, trial doctors to fight Amgen’s cdesisison, reinstate treatment for the trial participsants, and continue GDNF rteasearch . And to get the truth out about these trials. We’ve learned a lot ovr the years about new drug development and research and the need for patients to be involved at every level.

More later, but for now see

The index page is at:
http://www.pdpipeline.org/advocacy/gdnf_table.htm

and an overview is at
http://www.pdpipeline.org/advocacy/gdnf_overview.htm

linda

stevem53

I met, and got to know Jason Isaacs the actor from Liverpool England..When he was in Rhode Island filming the Showtime series "Brotherhood"..I was introduced to him, and on more than one occasion in his company..His chauffer was a good friend of mine..Jason also co-starred with Mel Gibson in "The Patriot" as the English Army Colonel Tavington, and in a number of other films including "Harry Potter" as Lucius Malfoy, and in "Armageddon" as Ronald Quincy

Great guy..Interesting to chat with, and down to earth

So thats my 15 minutes

__________________
There are those who see things as they are and ask..Why?..I dream of things that never were and ask..Why not?..RFK

Bob Dawson

Steve, why did you meet him, or how, or something? What were you doing there? He was filming in your town? He was great in some movies I saw.

stevem53

Yes..The Jason Isaacs..I have a buddy who works on the special effects crew, and was also Jason's chauffer..I got to meet Jason through him..He filmed 3 seasons of "the Showtime series "Brotherhood" here in Rhode Island where I live..I also have another friend who was an extra on the Brotherhood set

http://www.sho.com/site/brotherhood/home.do

__________________
There are those who see things as they are and ask..Why?..I dream of things that never were and ask..Why not?..RFK