[jeanb]

Laura and I have been exchanging PMs about pwp who are working for pd advocacy (but the rest of us have no idea what they are doing). There is a lot going on, but it's not public.

So I'm going to start a blog on //grou.ps/pdadvocates (free and open)

I'll write about things I'm working on. Maybe Pegleg will do the same? And others?

Stay tuned!

Jean B

[GregD]

Now that is a good idea!

This also shows why there is a need for ONLY one PD organization instead of 20 - 30 or whatever the count is now. Each group could keep thier fancy name but they need to be coordinated under one organization.

GregD

[pegleg]

Jean
thanks for starting this forum - I have already signed up. However, in retrospect I don't understand why we wouldn't post what we are doing here.

And one might wonder why I don't post everything I do . . . I don't because it starts to look competitive. I'm too up and down just living with PD to compete, and that is not why I do what I do.

I guess I am wondering why I was singled out to post, or was I just an example?

Peggy

[jeanb]

Peg, I singled you out because I knew you'd signed up at grou.ps And because I know you are one of the pd advocates who works quietly without any fanfare.

I feel like you do - I don't talk much about what i do because it ISN'T competition. I do what I do because it is my way of fighting this disease - and yes maybe it's a compulsion - but it isn't a bad one. IMHO

But since some pwp who are new to advocacy are curious about what some of us "old timers" do, i posted on grou.ps I'd love it if you'd mention some of your activities. But if you are uncomfortable with thee idea, I respect that.

Part of me sees a certain balance in this - pwp on this board have long been asking Carey and others who are patient reps to be open about what they do. Now pwp are asking more "seasoned advocates" to be open about what we do. Isn't that fair?

Jean

Originally Posted by pegleg

Jean
thanks for starting this forum - I have already signed up. However, in retrospect I don't understand why we wouldn't post what we are doing here.

And one might wonder why I don't post everything I do . . . I don't because it starts to look competitive. I'm too up and down just living with PD to compete, and that is not why I do what I do.

I guess I am wondering why I was singled out to post, or was I just an example?

Peggy