Join Date: Aug 2006
Time is still not neutral
People here have written a lot about how your faith, your belief in God’s will, sustains you. You know I am a long-time unbeliever. Long ago, it seems, some of us used to discuss serious issues such as our faith openly on the Forum (when we were allowed), in chatrooms, on late night messaging or phone calls (when we couldn’t type), and when we got together. We grew to care about each other first in spite of and then because of our differences.
Paula, I've never even had what I know would be a privilege and honor to meet you but from your posts alone love you. I grieve for the pain and suffering everyone here endures because of PD and feel a strong bond with them all. In a bizarre way PD unites us, strangers who might never speak to each other under different circumstances, perhaps thousands of miles away, but now, so close as we share information, support, and a zealous desire to help each other.
So true. If not for PD, and Braintalk/Neurotalk, I would never have met, gotten to know, and visit and love you, Nan, Brenda, or Michael7733, or Peg, or Toadie or Mo—or Greg! Or the hundreds of other pwp and plwp (and PLWP) I have met, befriended, and worked with around the country/world. Bear with me here, I am coming to a point.
Finding Braintalk, as it was then in the late 90’s, was an amazing breakthrough, finding an online community, all these people connected by PD. And then one day the Braintalk chatrooms collapsed and suddenly the Forum (for “posters”) was “flooded” by chatroom people. And how we (I) “posters” hated the disruption. Chatting seemed so trivial.
Until we started to interact and connect. Then Braintalk got exciting. Getting involved was the key. First online, then face-to-face (what we used to call “real time.”) You see where I am going.
I am writing this so that this huge part of your PD life—the multi-faceted work you have done in and for the PD community beyond Neurotalk and Braintalk—gets folded into the mix with the rest of these posts. It is important to recognize how central your work has been and how much you have accomplished for the PD community. Hopefully a little understanding of your history apart from Neurotalk will inspire others to pick up and carry on the torch you are forced to lay down.
PLWP; Grassroots Connection; Shake, Rattle, and Roll; Pipeliners; PAN; the GDNF fight; the Book; and much more I know I am leaving out. You are known and respected in all the major PD orgs and outlets. Your experiences and what you learned from them—and are willing to share—are irreplaceable. You are one person I can honestly say worked tirelessly (or as near as a pwp can get) for pwps’ rights in the relationship between the medical field, the national PD orgs, and patients. Your activist/advocacy work, along with that of your fellow activist/advocate colleagues, is reflected at the very heart of the press release issued July 4th by NINDS, “Patient-derived stem cells could improve drug treatment for Parkinson’s.”
I can’t list all you have done for the community. I can’t count the number of times we have met up at forums, meetings, congresses, retreats, get-togethers. How many hotel bars we have met in or cigarettes bummed while standing outside during a break to discuss the serious issues facing our community and what could we do about it all?
My point, for everyone else reading this besides Paula, is that our loss is not only personal, but we are losing a champion of the Parkinson’s community. I remember the loss felt when Senator Paul Wellstone died in a plane crash in 2002. Our loss of Paula will be as great.
So who of you will step-up and get involved, continue Paula’s dedication and efforts? Because “Time is not neutral for people with Parkinson’s disease and those who will get it.”