I Get the Feeling this thread is for educated people only.

[ol'cs]

A great bit of co(s)mic relief there Bob!!!! 10 points!

[Conductor71]

Originally Posted by Bob Dawson

Didn't I meet you at the World Arm-Wrestling Championship in Zagreb in 2010? Remember, I was representing Albania, and got disqualified for tickling my opponents with my free hand?

Not only is the agonist not sexing you up like it should , but now you are seeing things, my friend. I never wrestle east of the Mediterranean.

You are hilarious.

Laura

[Bob Dawson]

for educated people? Partly

The group is self-selected around one fact: that we are all talking about Parkinson’s for any reason. It is not an org, it is an electronic space where anyone can post never or a lot or just pass through. There aren’t really members because there isn’t really an organisation to be a member of.
We don’t have a walkathon, and it is not a forum inside an org., it’s a forum with no org
Self-selecting starts with do you want to talk about PD or not. I did not for years because I did not want to join the PD Club and wear a ribbon and talk to other diseased people about disease.
Hi how ya doin?
Rotten
Yeah me too
Kill ourselves?
Not yet. Wait a few years
OK
Next step in self-selection you got to have the internet.
Not everybody goes on line except for hockey scores around here
So it does end up being a peculiar group depending on who posts
And who posts now influences who posts next
You get scientists and dreamers and the determined and the wounded
Only place with white rats experimenting on themselves
Only place that fought AMGEN on GDN F
Only place that had Paula W

that's a lot

[Bob Dawson]

So why did I come to this forum of strange sick people? Looking for meaning (WHAT IS THIS THING?) and to know that other people are travelling the same rocky road (YOU HAVE THAT TOO?).]

Because my life has been changed against my will. The things that I was sure of? Pfffft! My lifetime definition of myself? Pfffft!

Was the script for this disease a joint venture between Franz Kafka and Edgar Allen Poe?

There are a trillion light switches in my head. They can be “On” or they can be “Off”. I am “On” at this minute. I am typing these words right now, with no difficulty, and I can speak.
But when I am “Off”, I have no keyboard to hide behind; I can scarcely talk, or write, or walk, or feed myself. At times I am frozen from the neck down.
The “Off” periods get longer. The “On” periods get shorter.

Everybody thinks they know what your problem is: you are crazy.
The person who cannot walk morphs into the person who can dance. The man of words becomes incomprehensible. The roofer falls off his ladder.

You some kind of a nut, mister? Yes, actually, never thought about it before, but yes, yes, I am.

They say about us: “Lights on, nobody home.” The contrary is true. The lights are off, and I am in the dark, but I am here, conscious, alert, watching, experiencing myself being dismantled by an enemy I cannot see.
As Parkies say to each other: “I wouldn’t worry about it none. It’s all in your head.”

You never see the disease; you see your self, in mirrors that get more and more distorted, as you graduate from “That doesn’t look a thing like to me” to “I am so sorry, but yes it does”.

We, the Parkies, believe that we have a noble calling: Reverett123 taught me that we are canaries in the coal mine, and now we are flopping around on the floor of the cage, twitching, contorted with spasms. We are signalling with our bodies that something has gone terribly wrong.

Some day this disease will be eradicated from the face of the earth. In the meantime, I find it much better to get in close to the people who are living it, than to stay distant. It is not the adventure we would have chosen, but it is a profound human adventure, these random people suffering from a mysterious affliction.

Hold us near and bind us tight, all your children here, in our rags of life.
There are days when I love you all.

And that’s not the agonists talking.

[pegleg]

Hi
It's been months since I have visited the forums and even longer since I've posted. But it was your name, Bob, that drew me in here. I love your response ( I always do)

For the record, you are far from being a nut, and I talk to myself, too.

Interesting thread.
Peg

[Israel]

Dianna,

I, too, felt and feel intimidated and frustrated with this forum. This is my issue, and I am working through it. I find many abbreviations, terms and diseases that I don't understand. I do find many people struggling just to get through their day. They give me courage and inspiration when I am feeling sorry for myself.

More importantly, there are many many members here with a lot of experience, knowledge and information that they are willingly and freely passing on to those of us who ask for it. In my opinion, they are caregivers. They do care. I can accept or reject what I want.

I was dxd with PD (didn't know what that meant) several months ago, and I am not educated regarding PD. Reading through other posts is helping me to feel more comfortable. For me, it takes time to feel at ease when I am in an uncomfortable situation.

I would suggest that you give yourself that time to become comfortable and take what you need to help yourself.

My best to you.

Israel

[Bob Dawson]

Originally Posted by pegleg

Hi
It's been months since I have visited the forums and even longer since I've posted... Peg

Thank you, Peg, for your kind words.
Your absence here has been noticed. We hope that you are well, and busy doing what you do, such as hassling Congressmen to support PD research. And getting the book out?
We hope that we have not driven you away, such as when I sent out that painting of a monster with big teeth. There was widespread agreement that it was "horrid".
Some new people are saying in this thread that it is not easy to join this forum; I wonder if you and others who were here at the very beginning also find it difficult to stay here after a certain point.
It could be that the site is unhelpful to the newly-diagnosed, with few symptoms; and unhelpful to those in advanced stages of the disease, with crippling symptoms; and is mainly useful to those in the middle stages.
I don't know; I am just wondering.
I sometimes rock boats and then wonder why I am all wet.

[pegleg]

Dianne
If you feel that this forum is "for the educated," I have to ask, "Educated in what way?" Back around 1998-99, I came here (formerly BrainTalk (BT) - which BTW still exists, only at another site). I was so faithful to BT. Rick, someone close to the originator of BrainTalk" is still scratching his head as to how the mass of us older posters ended up here.

Anyway, I was one of the last to "convert" from BT to NeuroTalk (NT). Why? Because the BT forums literally saved my life. I had lost my job under disconcerting conditions, and there was no one to talk with about it. I stumbled upon BT and poured my heart out. Surprising to me at the time, there were people there who had similar circumstances or some who just wanted to provide comfort and understanding. Then my friend, Paula (former queen of NT - may she rest in peace ) assured me that 95+% had moved to NeuroTalk ), I started posting here ( my profile says in 2006). But I left Braintalk kicking and screaming. I even talked back and forth with Dr.Houck (?), who is still trying to revive it. But BT's followers had already built an allegiance here. And Rick, in defense of "the SOB who owned" BrainTalk, he didn't desert us, he , like many of us, went through several crises connected with his efforts in providing BT along with a personal episode. The situation was enough to make him feel uncomfortable in returning, and although he no longer reads here, if anyone close to him sees this, please tell him that I understand and verymuch still care. Why? Because he saved my life - and I can never repay him enough for that.

My take on what you will find here is diversity, yet some compassionate people willing to help you, and there's probably not a thing you have experienced that someone else reading these forums has not. Then, there are those transplants from BT who know "what's next," and have a passion about trying to divert the fork in the road that leads to our future. I am in the latter group, but sometimes switch over to give a newbie, such as yourself, an opinion.

You may be asking what the passionate people are so driven about? We are driven to finding a cure! I know we may never eradicate Parkinson's,but we can certainly improve some of the therapies that will give us a better quality of life. And I and many others are convinced that much of the answer lies in allowing the patient, the PWP access to those making decisions about our future. We want to be part of a patient-centric team, concerned in improving QOL, not in finding a blockbuster drug or treatment.

I am busy outside of this forum doing such things, and our soon to be released book is the story behind this very thing. And folks, you would not believe who all lurks in these forums. I have been contacted by many of big pharma administrative decision makers, many private researchers, and many PWP, from those struggling to make ends meet to the rich and famous, as a result of posting here.

So, finally wrapping up here - this forum wants you, needs you, must have you, to join forces with us. We have strength alone, but we have power together.

Welcome aboard, Dianne!
Sincerely,
Peggy