Just for the record, not that it matters, the only reference to Vicky made by me was to thank her for the debunking myths - i agreed with them.

but they are just details......
last reply from me in this thread

Didn't my last previous post show, through humor, that nearly everything in our lives is relevant in this thread about our lifeline--our drug supply? There's no need to accept disorder. Our lives are stirred up enough.

What I have been doing this last while is to cook a balanced meal for two, declutter the dining room table, go for a walk, mindfully crochet two rows of shells on a shawl for a young woman who is in a Buddhist monastery, write an e-mail to one of my doctors about my meds, and call a friend who was feeling down.

trfan, I wonder what's this t r that you're a fan of. I wish you'd tell us more about yourself. You might even be invited to one of our homes some day, because there is nothing exclusive about us. Do you have PD? Do you belong to a support group? Are you satisfied with your relationships with your doctors? Feel free to search the forum if you don't want to ask. (To search this forum, use the link on the blue bar at the top of this page. To search the whole neurotalk system of forums, use the link on the subject board that you were on just before this one.) Please remember we are just people like you, and some of us make it a project to get on here and help others, with varying degrees of success.

Now if you have any further criticism or if you need help of any kind that you want to keep confidential, please PM me.

I'm outa here.

Jaye

Jaye

Hey Vicky -

Those relationships take work - any one who can manage to keep a marriage going in the face of chronic illness has my admiration!

I'm divorced, and my only child just left this year for college, so I do have lots of time on my hands. But I want to make clear that being an advocate doesn't take a lot of money. I live on Social Security Disability and do most of what I do on the computer or phone from my living room. I attended the PDF Patient Advisory Council Meeting in New York this month on a conference call rather than in person; I served on a PAN committee that met weekly for the last 6 months via phone conference; all these calls are toll free. And the orgs are pretty good with helping out with travel expenses - they have learned that if they want us in the room, we need help with money. I just want people to know that getting really involved doesn't require wealth - low income shouldn't be a barrier to participation.

I also agree with your point about feeling uneasy about lobbying for PD exclusively - it seems selfish to me to take money from one disease to give to another. I came to terms with this personally a long time ago, realizing I have to "sleep with the devil" (the national orgs), and do their bidding, because it gives me access to talk about issues with a wider impact like depression or living with a chronic disease in general. I guess we all have to make compromises in our lives - this is one I choose to make with my eyes wide open.

I'd like to point out that you already are an advocate, and a good one, for patients to take charge of and learn about their own individual disease (a position with which I agree, by the way). You don't have to work with one of the orgs to do what you are doing. I wish you could see disagreements between us as just a difference of opinion and exchange of ideas, and not a personal attack.

p.s. to trfan - Paula and Jaye are two of my best friends; I love them, and it would be silly of us to pretend we aren't silly with each other most of the time. Despite the grim nature of our illness and frustration we feel when advocacy efforts fall short, we love to laugh - and laugh together, as much as we possibly can. Sorry if it appears as insider trading; it's just habits (maybe sometimes bad) built from years of familiarity and friendship.

Paula, Jaye and Carey are my dear friends too. THey are 3 WONDERFUL ladies!!

My suggestion is simply do not read things that you do not personally find interesting. It works for me!!

Charlie

Does that include me? Respecting elders, I mean. Or is it only majority elders and not minority elders?

I am treating this thread as if it were closed.

Goodby for a while.


Jaye

I think we should always keep in mind when replying to a thread or conversation whether we're doing so in reply to the intent and spirit of the original poster (OP) in the thread. Also, although I know it can be hard, if we feel like we are only replying out of emotion, I've found it helpful for myself to step away from the computer and *not* reply just then... When I come back to the thread later that same day, and read it with a more objective eye, I can see how if I had replied earlier, it would've likely been defensive and not helpful to the original poster's thread.

So I appreciate people trying to keep a cool head here, even when we disagree. We should try and keep things to the topic of the thread, and not make (or take) things personally.

Thank you all, I know these kinds of discussion, when they can stay on-topic, are very helpful to members here...

John