Blue Dahlia: You seem to have assumed that I disagreed with Rick's version of PWP "reality," which I did not when making my suggestion. The fact that Rick may well be on the mark makes the suggestion more worthy of consideration, not less.

Rick: As always, I appreciate your postings and perspectives as a PWP who has long-term personal experience, extensive knowledge and a kind heart, I really like the proactive stuff -- inspiring advocacy is not only good for our collective efforts but for individual sanity, especially for those of us who had to give up careers and miss the focus and sense of accomplishment that work (ideally) provides.

Having recently accompanied my sister on her brutal 7-year death march from cancer while I silently lost much of my ability to parent, dance, write, swallow, smell and sleep, discovering along the way one horrific truth after another, please do not presume my outlook is rosy.

I'm just sayin' that painting such an unmitigated train-wreck of a picture could have dire consequences. And, while life as we have known it is over, life is not over. It is changed; we are changed. Inexorably and forever changed. Our disagreement here may be purely semantic, or our perspectives may be completely different. What do you think?

Dear Paula: I am glad my post caught your imagination, and thank you for trying to make me part of the solution. Right now, I am up way past my bedtime again...
Rose

Rick is not on the mark regarding any life but his own, IMNSHO. Suicidal ideation is no fun. I have been there. 40% of us have Depression. If you are having self-destructive thoughts, please get yourself to an appropriate doctor. it is an illness, not a moral defect. I know I shouldn't post at this hour; hope I'm not offending anyone.
Jaye

me too but at least i get to sleep in tomorrow...as if i can. jaye i looked up suicide ideation and don't see it in what we are a talking about, it would be the concept to avoid in the background perhaps. A distant thought not at the forefront where hopefully there could be very good conversation. It 's very sensitive and would have to be consulted about.But in my mind it's not the emphais . blowing their brains out is beyond insensitive which to me makes it a vague but dark expression, not really formed. a smart a.. comment?Not even literal.


ok tired...i'm not married to this,,, just a spontaneous but not unrelated idea.

nite,
p

I have been struggling with suicidal thoughts myself this year - am getting help to support me through these moments from a counselor. I actually had brought Rick's post to her last week to read because it had so upset me. Yet on the other hand, I felt that Rick really nailed it...in a certain light. Or how things can be if we don't have mitigating factors, which we are all working to have. I, for one, even though I was diagnosed 18 years ago and am only now 52 - and despite everything - still believe I am going to get better somehow. I really do. And I haven't given up hope for any of us. I'm not requiring anyone to be optimistic with me, but I am offering to lend my faith if anyone needs to borrow it. By the by, upon diagnosis at age 34 I wasn't even told that there was a possibility of doing well at all, but more to expect to be in a wheelchair within five years. I took an African dance class the other night. I say that not to brag, but to say even though I am struggling, there are possibilities. and that we each have an individual course with our condition. And I don't allow anyone to say about me - well, when you finally progress to this point - they don't know, and they have no right.

So I think Rick's description is more an abstraction of the worst case scenario. But I think it could be most valuable for non-PWP to realize what it is we are facing on our darkest days, because even the ones closest to us - the doctors and caregivers even - often don't really see how frightened and trapped one can feel. Thinking even more about the AIDS activist analogy I've been harping on, I think it was much easier for people who weren't sick yet to feel that they could be sick really soon unless they took immediate action, so the identity was much more shared between the well and the unwell. I think probably many of the people that "deal" with us think, "well, that's not me, that is their problem," and feel a sense of underlying security that prevents them from really understanding it personally. Of course, I'm sure there are many exceptions to that idea also, people who do really get it. But face it, if you didn't have to, how would you know how it felt or can feel? There's where I think Rick's words can be a strong communicator.

Hey guys,

I'm realistic, no way near suicidal, and please there is always hope. We just need to push it a little more than others.

I have had PD for 10 years. Am a breast cancer survivor and have recently had my thyroid removed because of thyroid cancer. How am I dealing with all of this? Beats me......but I just bought a new house with my SO and am looking forward to a loooooong happy life with him.

I really didn't intend to do more than shake people free from the saccharine stuff they feed us in supposedly giving us hope. I think hope is vital, but when they pat us on the head and lie to us, that gives us false hope. And when years later it becomes clear to us that it was an illusion, then we have the funk that has been being released here. Far better that we were told that hope lies with being aggressive in those early years when it was/is an option.

A visit to one of the other forums (the big one) is enough to make me want to scream. They are all so full of hope. They've been Dx'd a couple of years and are happily waiting and comparing notes on the drug of the day. It's like observing a game of cribbage on the deck of the Titanic. I had just come from there when I wrote those words and, frankly, I would not have posted them there. They would not have understood and I would not have wanted to destroy their hope even if I see it as false. This is a tough one.

I so share your thing, Rick. I loved your piece because it grabs people by the shoulders and shakes them up, even though I had to deal with how sad it made me later. But I think you put it well, we are all entitled to hope, IF we recognize the deception that characterizes much of the systemic way we have been treated, and start being proactive as soon as possible. With eyes wide open, there is a lot of hope.

And I know what you mean about the other forum. It's like where do I begin, so I don't even try.

But I've said this many times, there is no such thing as false hope - hope is only that, not a promise. And for some people, medications that seem like poison to me are greatly beneficial for them, and I wouldn't want to take that away from anybody. At the same time, we have got to do something about the information that is suppressed, not understand, faulty assumptions made, interests highly conflicted, etc etc.

A few thoughts here about this thread.

As I wrote in my earlier post, the reality of PD as described here was overwhelming for me. I have been thinking about a lot. What do I believe in, a false hope that a cure is around the corner or the reality that nothing is there to help me? My symptoms get worse when I am down, and I can function better when my spirits are up. Given that, its true for many, what is wrong in living with a false hope especially for the newly diagnosed? If it works to slow down the progression and gives a few more years of "normal" life, isn't it worth it?

Each of us have faith in something or other, alternate therapies, diet, exercise, science etc., and we all are hopeful that it works. For example, having been in academics and seen at least a few discoveries that benefited patients, I am not so distrustful of researchers when I hear them say a cure is a few years away. Thats what they are hoping for and working for and one needs that to go on.

I am usually an optimistic person and managed to get back on that path. If I am fed false hope and if it works for me, I will use it for my advantage!!! I may sound naive, but that is my survival strategy.

Girija

Hi girija,
i am glad to see you feeling better and want to add that i didn't mean to leave you without hope or thinking there was only false hope. i was talking about dealing with your fear. There's always real hope; i don't think about the word hope much and i don't think too much about the future. There are all kinds of ways to cope.

There are things we can do tho to make sure everything possible is being done. People see us and think we've got sinemet so we are ok......sinemet is just as likely to destroy you somehow as pd is. we are not ok with just sinemet. Do people who make decisions on what gets funded believe we'll be ok with sinemet? - and even worse , go another ten years trying for a pie in the sky while we languish on sinemet?

i believe in hope, but i also believe we can bring about solutions and that creates real hope. my generation had reason to hope because the 5 yr lie hadn't been disproven. my generation played ....i wish i could tease an inner child out of some on this forum.

It saddens and infuriates me that we are aimlessly trying to do something to help and then discouraged or ignored.

Believe in yourself; you'll do ok and may discover something yourself! With a little humor we could have this forum relax, does anyone know if the obama video being shown today is online? i think it's obama written or approved? anyway it could just be the funniest thing i've ever seen.

i'll look or someone post please if you have it. for all the whining i do i'm not on an antidepressant so it's possible to cope and hope.

paula

well i watched it without sound the first time. Adding sound adds politics but oh those legs~new link:
http://www.postchronicle.com/news/or...12239038.shtml

this is a great page...really safe with feelings. no competition, you blow it and it's gone, not lingering for eternal punishment and damnation. ok i'm stopping there and just commenting that the obama in that video is the one i can finally relate to...and i mean it lol. there are a few people who might recall just how long we have been pulling together here and the first video we just briefly talked about , but i wanted jaye to be a helicopter and fly to different houses to see our struggles with music I am the walrus.

My grandson will be 6 on thursday. he has been raised on superheroes and by default, i'm comfortable with men in tight costumes who fly and save the world all the time. It's cartooned, i would have loved that,well it's perfect.

obama didn't do it, but has seen it and enjoyed it..lots of laughing. that takes away the tension of deciding whether it funny, but mostly wondering what someone else is going to think. humor is a whole culture, you have to embrace it .

we are all trying to do the right thing. but are a little lost. ok but can you still watch and just laugh ? you may trust me a little more - it's just good fun well done,hope it has a big laugh effect. it gets better as it goes. oh have to look at link above; not on clip board and afraid i might lose post. i don't want to overhype -stopping lol this is good because it's clean fun and fun politics.

zzz

paula