Girija, like you, I have found that PD is more bearable if I hold on to hope and my faith that scientists will one day get it right and deliver the cure. I struggle to live in the moment and not project too far into the future or recall the past and my father-in-law's horrible end journey with PD some 25 years ago.

I focus instead on what I must do to hold the line against this insidious disease... believing I have some control over its course. Daily exercise is my strongest weapon against physical decline and helping other PWP through www.pdplan4life.com my greatest source of emotional strength.

In the words of MARTIN LUTHER KING, JR.:
"If you lose hope, somehow you lose the vitality that keeps life moving, you lose that courage to be, that quality that helps you go on in spite of it all. And so today I still have a dream."

Girjia, hold onto your hope... it's all we've got.

sheryl

I haven't been on here for quite some time, but have checked threads daily as a "lurker".

A while back I started a thread entitled "What's wrong with the PD community?" that garnered 1000's of hits, tons of responses, and eventually a number of related threads. It was influenced by the "Stand Up To Cancer" campaign that started at the time. I thought, if cancer can do something like this, why can't we? Why are we so disjointed and unconnected as a community? The resulting responses to my thread were exciting to read, but then things grew silent.

While I am well aware that many have come (long) before me and created inspiration for the PD community to advocate for themselves, it was nonetheless disappointing to see things quickly return to the status quo. So I took a break to reevaluate where I personally was and where I wanted to go.

Then this thread popped up. And while it's all over the place in terms of ideas and directions, I find it exciting.

The bottom line for me is, the orgs don't speak for me, nor does MJFF. How could they? When have they ever asked me, or you, how we are, what we feel, what we need, and what we think? (They certainly aren't shy in asking for my "donations" to "my cause" however.)

I think we need to get p*ssed off, angry, frustrated, and motivated to start making some serious noise and let our voices be heard. Maybe it's the apathy and depression that a great deal of us struggle with that slows us down, the nonmotor symptoms we deal with, or just our PD in general, but we need to find the strength and energy to fight for our rights. If not us, then who? Certainly not the orgs that "supposedly" represent us, or MJFF that raises a great deal of funds for "their" mission. We have to find a way to eliminate the fear and embarassment of being a PD patient that seems to stop so many from speaking out.

We have a voice, and very important thoughts that deserve to be heard, so we need to start using it. Now.

Time to fight the good fight...

Todd,

In a different thread, "a new kind of patient advocacy group forming?", I wrote about a new patient group, called ALPHA, that is in its nascent stage:

"The June 2 Washington Post featured an article by Jackie Christensen, PAN Minnesota State Coordinator and a member of the Coordinating Committee for the Collaborative on Health and the Environment (CHE) where she is also co-coordinator of the Parkinson's Working Group.

Jackie's article was about the literal and figurative strength of the Parkinson's patient's voice; at the end of the article she was identified as a founding member of a new PD patient organization, Allied Parkinson's Health Activists (ALPHA).

That group is real and it is in the process of forming and being incorporated. A mission statement and group/governance structure are being finalized. One model being looked at is CHE, the organization that Jackie belongs to, with working groups on various subjects of importance to patients, including opinion papers and research articles. It will also be a place to network around community health resources including a speakers bureau.

The founding of ALPHA began in informal conversations at this year's PAN forum in April; familiar names include Greg & AJ Wasson, Jackie Christensen, Leonore Gordon, Linda Herman, Carolyn Stephenson, John Ball, Kathleen Russell, and Carey Christensen. Bill Bell of the Northwest Parkinson's Foundation is serving as mentor and facilitator, and will make the NWPF's non profit status available to house potential grants. The group has not grown beyond those who attended PAN this year.

ALPHA’s goal is to provide a patient-activist perspective; the organization will be open to those who would like to participate in any of the working groups or contribute to the resource network. Another goal is to keep the structure flexible so that it can ebb and flow with the abilities of patients and the issues that need to be addressed in a timely fashion. It is intended to represent patients with a proactive, independent, responsible, knowledgeable, professional voice, and will not be simply reactive to the other national organizations, pharma, or other players.

I am really jumping ahead on this thing; I didn't want to say anything until the initial infrastructure was completed. There is a desire, like the one expressed by Fiona in the opening post to this thread, to keep the working group small and private, and that's how it has evolved.

But being private at this point doesn’t mean being secret. Especially among patients who are looking for a place to put their enthusiasm for activism.

The national orgs are already aware of this effort (from the Washington Post article); we have a very sketchy website with preliminary language here: http://www.alphapd.org

What ALPHA finally announces might not be what the posters in this thread are seeking; but it will be one option. Soon."
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We're following through on this one; will be meeting later this summer to finalize; have discovered it's easier to move forward with a small group that creates a flexible platform for many patients voices and ways to get involved. But it will have an activist point of view that reflects many of the opinions expressed in this forum.

It may not please everyone, but you gotta start somewhere.