Harley, would you possibly copy those links into the Sticky: Useful Sites & Resources, then they will be available without searching for the thread.

Hugs to everyone involved

again!

Me too. These are my friends, and I left Braintalk at last because Harley was banned in the face of all common sense or logic, and then Charlie left and CS was banned because he stood up for her. I woould leave anywhere on the same basis again, however much pain it caused me.

Are some animals more equal than others (a la the book 1984)? Yes, DocJohn, [unnecessary comment deleted], because when a Parkie gets upset we REALLY get upset and need a chance to chill and to catch up in the thinking department. And besides, I long ago promised Harley I would be on the same side of the barroom as she is when the furniture starts getting busted up. The woman is not capable of subterfuge.

J. is my first initial, 61, young onset PD diagnosed in 1999 at 53, sorry about your father. I'm retired on disability from I've never said what, and I wrote a substantial percentage of the reliable, solid information about PD that is in the BT database that was SAID to be lost--and some of the hysteria and BS. I'm just getting to trust again that I can give that much here.

I prefer Cooking Light, silver, and wear jeans and casual shirts 89% of the time, my favorite is a genuine Harley t-shirt with a rip over the left breast sent to me by Guess Who. I'm a melting pot person from humble origins and have a college degree. I'm a so-called progressive Christian and I do spiritual advising/mentoring in which I learn as much as my companion. I wake up crocheting, and I just discovered beading (jewelry making).

And time's up for the day.

Love you guys, you, too, John.

Jaye
"If you want to keep moving, keep moving." -Bob C.

John,

Think about joining Les Psychologistes Sans Frontieres. There are no real borders any more.

J

Rick Everett. Hillbilly white rat and scourge of the pharmaceutical industry (they just don't know it ) I guess I'm close to being an oldtimer by now. Driven to help PWP (even when they don't want it) and deeply appreciative of this place. Might remind the management that I scarfed the name on behalf of all. Typical parkie hero child maneuver.


Having earned my soapbox, my thanks to John for actually meeting with us. Those from BT know what a difference there is there. As to you concerns about losing people, I'd point out that many other boards have similar rules and I don't like them a bit, especially those darned "Health Boards" series. I suspect that somewhere along the line someone who did not understand the Net and its implications wrote that into their rules and it was copied ad infinitum. The thing is that most of us would not abandon a good board for another good board - we'd enjoy both!

There is an opportunity here for NT to stand head and shoulders above the rest by taking the attitude that we're so darned good we don't care about the other guys. Our people are Free, not locked into some cyber-equivalent of the Company Town like those other guys. So long as nobody is rude and abusive (not to be confused with offensive) then let free speech be the rule. And if someone gets out of line give us - the community members - a chance to pin their ears back. If it gets rowdy then we can call for help but I bet we can handle a large part with simple peer pressure.

I know that "the other guys" pride themselves on their efforts toward new communities such as Second Life etc but they are fooling themselves. If the rules go beyond maintaining civility and into control, as theirs do, it ain't no community. This place has the potential to be one.

Now, back to saving pWPs- John, read my ginseng thread with your dad in mind. And thanks. For this place.
-Rick

Thanks Dr John for you willingness to listen, to sort situations out, and work with us..This would not have happened at Braintalk..This thread would have been deleted, and somebody/s would have gotten banned..That is the way they handled situations there, and it was always done under the cloak of anonymity..That is why I left there, and also because three members of our community got banned for something extremely minor a few days before the BT meltdown..I am at home here, and have no plans of leaving..Hopefully I/we will continue to help you build this community

As you now know, we are a tight knit community, and some of us have met each other..I have met 12 people on this forum..These folks are my hope, and have been my life preserver..I am forever indebted to them for showing me how to live a fulfilling life with this disease..The altruism and random acts of kindness are, and have been common place since I met these folks 3 years ago

I was dx/w pd May 2004..symtomatic for 2 years prior..I am 54 years old, semi retired on SSDI..I was a commercial fisherman for 32 years, and still fish part-time to suppliment my SSDI..I owned a 47' Dragger untill pd forced me to sell it last November..I prefer casual dress..jeans and sweatshirts/tee shirts..topsiders 99.9% of the time..(Unless I go to a funeral)..High School graduate..I am spiritual, not religious, sober 17 years in AA..Divorced with a daughter 26 yrs old, and 2 cats

Dear Mr. Everett:

All kinds of people have Parkinson's. If the site is to be open to all Parkinson's patients, to have a "home" as beautifully stated by Kim, to vent, find support, etc., then the paragraph in your post explains exactly why the changes had to be made regarding posts allowed on this site.

"There is an opportunity here for NT to stand head and shoulders above the rest by taking the attitude that we're so darned good we don't care about the other guys. Our people are Free, not locked into some cyber-equivalent of the Company Town like those other guys. So long as nobody is rude and abusive (not to be confused with offensive) then let free speech be the rule. And if someone gets out of line give us - the community members - a chance to pin their ears back. If it gets rowdy then we can call for help but I bet we can handle a large part with simple peer pressure."

Because I am a minority in my views, I have had my "ears pinned back" by members on this site several times. Mob rule is not the way to run a site. Peer Pressure doesn't work. Would you encourage your children to use Peer Pressure against other student members of their schools? Would you allow your son or daughter to be bullied by other students because they did not have the same hairstyle, jeans, purse, music, as the majority? Has any one on this site been the subject of being teased or provoked because of the views they hold? What of the parent's who are scraping by on a small income and can't afford to keep up the fashions of the "Kool kids?" Should they be forced to sit back and watch their children be teased?

Doc John, Chemar, KimmyDawn, Curious Monkey and all the other moderators deserve thanks for making the choice to protect all members of this site, both the "gang" and the outcasts.

Caroline made the best suggestion to Laura. Post other sites on the sites that may be of interest.

Thanks moderators,
Vicky

Well you see, Carolyn is the organizer. She always was and fast too.


paula

The town square is the best model I know of here. There are a lot of benches and room for a lot of conversations. But good manners are called for.

Mob rule??? I am talking about the exact opposite. As for your own experiences, I was not there. It is odd that you seem to be the only one with this problem, though. Is it possible that you misinterpreted what took place?
-Rick

No, I have not misinterpreted your discription. If peer pressure (please define) is the opposite of mob rule (gangs of people with similiar views ganging up against anyone who doesn't fit in,) I would like to hear it.

There is room on this site for all person's with Parkinson's disease, but there is not room for people with Parkinson's who do not support certain advocacy stances. It only makes sense to steer threads away from possible "peer pressure" or "pinning a person with Parkinson's disease ears back" because their politics, religious or any other beliefs disagree with yours. Your "town square system" only works if everyone agrees on how the town should be run. I believe the poor moderators have been put in the position of being "sheriffs" enough!! Even the smallest towns have a police system in place. I live here too and am grateful for the thought and care our moderators give to keep this forum safe from having ears pinned back and protect members from suffering the pressure of peer groups.

Fine!!!
Vicky

it is very easy to get caught up in a whirlwind. it is just as easy to be left in the dust when the whirlwind passes. when a loud opinion is stated, it is human nature to either agree or disagree with it and respond with the same adamacy of which it was made... loud.

we parkies can be a loud mouthed lot. our voices seem loud anyways. while it is true that the contents of posts written need to be looked at carefully before jumping to conclusions whether or not the words are appropriate, it is just as true that the author of the post needs to take responsibility for their words and make sure.. double sure.. triple sure.. that they are saying exactly what they mean.

yea right

how can we be anything else than what we are? human... we are full of sunshine and we are full of rain.

i have one memory of mgh that i will never ever forget. to me, it still stands solo as to what support is. my daughter attempted suicide. arguments stopped, arms reached out, tears were shed, and support became what support is. real. true. and honest. though it was not pd related, it was life at its worse. and support at its very best.

when it comes down to the nitty gritty starkness of the reality we live daily, who are we but a bunch of names on a computer screen? i will tell you from experience, we are people who know humility because we live it too. each post is written through eyes we do not see through, but can somehow, someway, relate to.

so, go ahead and have a loud mouth. people may back away, yell back, or turn their backs. or they will hold you cuz they feel your frustrations. but either way, the message will be heard. oh yea..