im smilin from ear to ear... hey cs!

cs
I am glad y ou said "ol" instead of "old" friends! lol

Good to see your name on this forum. I just returned, also.

Maybe we can have a cyber-reunion lol

Peggy

MY memory for the most part is pretty good. The people on Brain-Talk PD who have posted about their own personal thoughts and feelings, I have somehow soaked up like a sponge. In many cases, I have a "mental file" of "who you are"; it's like having an imperfect memory of knowledge of the archives here for almost a decade now. In many cases I perceive those who post honestly and openly, more than just a picture of you in a tiny avatar, probably better than some of my own extended family members.
At first my reason for being here was selfish. All I wanted was advice and sympathy. This is a "natural" reaction to a PD diagnosis because one is usually stunned, angry, feels great self-pity, and other psychogical terrors that accompany an uncontrollable future, ii is not selfishnes in a denigrating sense at al, it is fear.
After that, I took a stance about trying to learn as much about PD so that i could offer to fill in some of the "holes" that neurologists usually leave us with. I had such great hope for the "near" future in the treatment of PD, but now are just jaded with the status quo of PD research.
MY purpose for being here from now on will be to listen to each one of you (and remember if you dion't engage here, you won't get "personal" attendance), and offer you what I can' with the hope of making your day less hurtful, more endurable, and with as little "all about me" as possible. I wat to know "All about you" so when I can post, i can possibly help you in some tiny way. I would love to have "uncanny perceptions " about answers to physical and psychologically related questions; I would love to have a big pile of thousand dollar bills to dispense to those who are living with PD and are at their wits end financially' And most of all, I would like to be able to talk to some of the doctors that you people see who just don't get it and are dispensing less than adequate care for you (doctors, including my own; hate people like me , people with enough knowledge about a subjest who can actually call their mistakes). I am not so arrogant as to think that I know everything about PD (FAR FROM IT!), but it really bothers me when i read about obvious malpractice that is quietly endured by many of us who put all their trust in inadequate doctors.
I'm also at the stage where I am pretty well caught up in my own web of problems, so, if it's to tiring to engage at the moment, it may take me awhile to get in gear and respond to personal messages.
And, after getting banned "forever" by a nameless, faceless moderator from the old forum, who cited the reason for my ban as "open dissagreement with the ruling of the moderator" for a rather insignificant post, I may need to find a "second home" if that event happens again.
Also as iI get worse i screw up more. A few days ago ,I spent over an hour preparing a thread about "progression" in PD. I hit some random key by mistake , and , voila, it was gone. Very disheartening to the advanced PWP, who wants to be involved here. Thank you all for listening. You're a great group of people to be associated with; all of you. cs

MY memory for the most part is pretty good. The people on Brain-Talk PD who have posted about their own personal thoughts and feelings, I have somehow soaked up like a sponge. In many cases, I have a "mental file" of "who you are"; it's like having an imperfect memory of knowledge of the archives here for almost a decade now. In many cases I perceive those who post honestly and openly, more than just a picture of you in a tiny avatar, probably better than some of my own extended family members.
At first my reason for being here was selfish. All I wanted was advice and sympathy. This is a "natural" reaction to a PD diagnosis because one is usually stunned, angry, feels great self-pity, and other psychogical terrors that accompany an uncontrollable future, ii is not selfishnes in a denigrating sense at al, it is fear.
After that, I took a stance about trying to learn as much about PD so that i could offer to fill in some of the "holes" that neurologists usually leave us with. I had such great hope for the "near" future in the treatment of PD, but now are just jaded with the status quo of PD research.
MY purpose for being here from now on will be to listen to each one of you (and remember if you dion't engage here, you won't get "personal" attendance), and offer you what I can' with the hope of making your day less hurtful, more endurable, and with as little "all about me" as possible. I wat to know "All about you" so when I can post, i can possibly help you in some tiny way. I would love to have "uncanny perceptions " about answers to physical and psychologically related questions; I would love to have a big pile of thousand dollar bills to dispense to those who are living with PD and are at their wits end financially' And most of all, I would like to be able to talk to some of the doctors that you people see who just don't get it and are dispensing less than adequate care for you (doctors, including my own; hate people like me , people with enough knowledge about a subjest who can actually call their mistakes). I am not so arrogant as to think that I know everything about PD (FAR FROM IT!), but it really bothers me when i read about obvious malpractice that is quietly endured by many of us who put all their trust in inadequate doctors.
I'm also at the stage where I am pretty well caught up in my own web of problems, so, if it's to tiring to engage at the moment, it may take me awhile to get in gear and respond to personal messages.
And, after getting banned "forever" by a nameless, faceless moderator from the old forum, who cited the reason for my ban as "open dissagreement with the ruling of the moderator" for a rather insignificant post, I may need to find a "second home" if that event happens again.
Also as iI get worse i screw up more. A few days ago ,I spent over an hour preparing a thread about "progression" in PD. I hit some random key by mistake , and , voila, it was gone. Very disheartening to the advanced PWP, who wants to be involved here. Thank you all for listening. You're a great group of people to be associated with; all of you. cs

cs,
I've done the post thing many times. You see it happen but don't want to believe it...lol.

We may have some of our other ol' friends return now that we have freedom of speech. Many if us are in a shape similar to you. We should congregate....there are options and we need to know them and write our own treatment plan.....the doctors will just try to sell you something.

paula

cs, the same thing should happen to me. Just wrote along one in General Neuro about looking things up for ourselves with several people who were interested in their unique reactions to caffiene and what bearing that might have on their diagnoses and care. Included in the group are about three of the new mods, a couple of whom have stated that if I don't like their silly thread interruptions I can block them from my view (the pictures of dogs and chat-room type puns, etc). I am so frustrated because silliness isn't always out of place, but rather than learn to be appropriate they'd rather shove me out of their faces. I would so much rather NOT have them blocked when we're discussing something that might help people.

Anyhow, I'm really trying to help build the place (except for a short rant somewhere), and of course I'm using MY concept of appropriateness and MY concept of helping, but hey, we all have that prerogative, and I am sincere. I don't intend to argue about it with them any further, but just build when I can.

Then OOPS, Parkie fingers danced off with it so I'm gonna dance, too, i.e., do my exercises, maybe take a shower with my new teak seat.

I commend you for your well-thought-out goals. I hope you're saving a personal copy of it all.

Jaye

Well, it's good to find y'all. It's always been great to know that there are answers to my questions and questions to my answers available. I've missed that!
Is there a chatroom available? Gosh, I finally got the hang of keeping up with five conversations simultaneously (a skill I had nearly perfected when my kids were little, but had lost); shame to lose it again!


Mouse

Yes Mouse, there is a chat room..Look in the upper right hand corner of the page under private messages

It's good to see you here. I wish you were feeling much better. Get well cards just don't work for us. But I CAN send you best wishes for more comfort and less pain. How does it go........if wishes were horses.......??
Well, anyway, I wish you all the best, and I'm glad you're posting here.

birte

Glad to see your name on the board again. I don't post as much as in the past, but I do check in a lot. Thanks for your continuing contributions and the help you provide. I am trying to retain some real optimism about the future - if not for us oldsters, then for the newly diagnosed. They say it's a long road that has no turning, but then again this HAS BEEN a long road (huh?).

See you in the funny papers, chuck,

Greg