starting off quickly saying that i am not asking that all the pipeliners [ and no one else] be permitted to attend the therapeutics conference.

i am saying that we are a group of advanced patients who have each come into our own, and have remained loyal in spite of much criticism and no vote of confidence in the community. we have multiple issues, have never been big stem cell advocates, and changed the way clinical trials respond in research.

Amgen just felll into the net we were weaving to watch out for just that.
But credit given...heck no, not all patients are advocates or activists and just d on't pay
that much attention. that's an individual choice. and the orgs? they jjust don't when it feels really important.

i like many in the orgs and have called them friends. this isn't personal at all. but i need to point out that they are slow, they slow things up too. ironically, what we are told we do,

i am not trying to put debi on the spot. i wouldn't post this if i felt she could not handle it and she can. i've been trying for two nights, lost some here, then moved to email. i'm hopelessly careless and clutzy now. i need to know if there is reason to not get a DBS. I want to talk about this with those who know what's going on both here and overseas.

A group of us met in mgh chat ten years ago. that group included tena, peg, [she mostly missed mike as she wasn't in good shape then i don't think] but he knows her know. mike talks about all the good things that happen to him, but he rarelly mentions the people he met online like it or not , my inspiration from that period still drives me, altho it is not mike generated. In my eulogy, i think it needs to say,
"Nana had the most peculiar habit of talking to michaeljfox online and emailing him. She finally recovered after he went two years without answering. this is parkinsonian behavior, but i was making progress and i kept him updated whether he liked it or not lol.

i know othrs there might have gotten a chuckle rfrom the emails finally, there really isn't anything more to say. i'm glad he is positive, have a hard time relating, as i do with most things these days it seems.

truth is we all have done as much as we could. since i am saying this publicly, i will not engage in a struggle over this upcoming conference, i like having debi here and who would have guessed she would be here. i trust debi.

welll we talked about a video, a few faithfuls helped, it could have been a multi group cause but it wasn't. with their patient collaboration, i am not sure it remains accurate. this wasn't mentioned to me. again, patients are very connected, we aren't just going to give up our community as we know it. this needs some sensitivity.

ok i have said enough. i ask all of the orgs to let patients at the table. you would be surprised at how well we handle ourselves. pd and med deblitation need to be sitting at the conferences, as they certainly can be accelerators.


thank you, maybe in another year we.......anyone care to finish that sentence?

tired , will fix typos later.