oh come on.. not in here???? moderated.
 

would like some input here. i gave a link to another chat room and it was moderated out. i really have issues with this. each and every chat and support site offers a unique set of people that some are comfortable in and others may not be. the site i offered is mainly audio/video based chat and i know that many like it, but also others dont. what does it matter which site is mentioned? why the deep dark secret? isnt the whole purpose of offering a site is for support?

cmon...

question
 

harley-
Do I understand you to mean that you linked to a chat on another site and it was yanked?
-rick

bingo.. yep

i did get a message...

"I'm sorry, but I had to remove the post in the Parkinson's Disease forum referring to the Yahoo Group's parkinson's disease group because it appeared to be soliciting members to join that online community (which is against our community guidelines).

I appreciate that you were trying to be helpful to the members in that thread, but I believe they were looking to try and get something going here, not on another site. Referring people to another site for their community sort of defeats the purpose of what everyone is trying to build here, don't you think?"

now i will probably be 86'd.. nice knowin you guys.. sigh

any clue as to why?
 

And keep my rusty old Yahoo group PD Power in mind if a reundevous is needed.

well i jumped right in it didn't i?
 

I was replying while the explanation was being posted so I guess I broke the same rule. Given that the group mentioned is dormant I assure all concerned I am not seeking members. I started it as a refuge when BrainTalk went down. Never thought I would need it again.

I gotta go to bed
 

so I guess I will have to wait until morning to see what happens, if anything. Boy, the old BT sure made us all jumpy, didn't it?

my mouth is sometimes my worst enemy as i have previously stated. i didnt realize it was against the rules to post another site or i probably wouldnt have. of course, i may not have become a member either. my apologies to the lords of the manor.

may i post the link? please? i think people should be given the option. if you say no.. i will not bring it up again.. probably cuz i will not be a member

Hi Harley,

Since I'm the one who pulled your post listing the other community, and PMed you about it (where I expect administrative discussions to be held, again, according to the guidelines), maybe you can explain how what you posted *wasn't* against the community guidelines here?

Are we supposed to enforce the community guidelines only for certain members, but not for others?

I don't know when someone posts a link to another online community what their intention is if they give no explanation with the link (like you did), so we have to act according to the guidelines to be fair to *all* members.

John

Answer me one question . . .
 

why are you afraid of losing members? Surely this isn't a competition. II know harley, and am sure she was not "soliciting."

I started out in the "unmentioned" group around 1998 - it was my salvation. This site was also a salvation for many when it took over when said site went down for an extended period. It took me a while, but I finally visited here, am still here, and remain a member of the other site, also.

I saw when harley's thread was shut down. I think somebody needs to reevaluate their motives (unless you can explain otherwise).

Peggy

i agree with you Peggy!
 

this is NOT a competition!!
our goal should be matching the person to the best support for them.

I refer people to other groups all the time from my group.(including here)

John;

I think you need to re-examine your motives in doing this. Laura(Harley) is a dear friend of mine and I can tell you that her motives are altruistic.

Charlie Black , group founder and administrator, of 1097 member DBS Surgery at YAhoo
http://health.groups.yahoo.com/group/DBSsurgery/

I don't know each of you personally, but I'm glad you know one another.

I perceived someone was perhaps unintentionally hijacking someone else's thread. The thread asked about setting up some chat times *here* to chat. Harley then suggested chatting in another community, but why? In the original comment and link to the other chat site, no reason was given (although one was later added after the fact). How can we continue building our community here if members go some place else?? I'm afraid I don't understand.

Without someone giving more explanation when they post a link to another community, we have to abide by the guidelines (unless you can help me understand why I shouldn't?).

If you don't understand the purpose of not allowing people to post their links to their own communities here, I'm happy to go into more of an explanation for this particular guideline. We're trying to build our community here, so yes, there's a self-interest factor at work here.

You're right -- it's not a competition. So help me understand how we can build a larger, stronger community here while still keeping some order and keeping out those who just join our community to pilfer members (because we've already had some who've attempted to do that!). I'm open to suggestions.

DocJohn

PS - Yes, and if you noticed, I'm a NeuroTalk fanatic -- that's my job. :) I'm here to help the community grow, thrive and build upon itself.

laura dean.. 49 years old. diagnosed parkinsons age 26. dbs 2003. christian, mother of 3 daughters, grandmother, wife, musician, poet, published auther, graphic artist, website owner, gardener, former biker, unemployed from boeing as expiditor on b2 bomber program,

personal preferences.. hamburgers instead of hotdogs, silver instead of gold, jeans and tshirts instead of dresses, wild hair instead of relaxed hair, led zepplin instead of kenny g, audio chat instead of typing chat.

next...

i sure don't have any problem...
 

.. with ANYBODY linking ANYTHING to this site. WE are all grown ups and can make the decision to go to any site we please on the net, so what's the big deal?
Now i think it's time to define to our moderators exactly WHAT WE DON'T LIKE, and I think that I can speak definitively for most members on this one. WE don't like fraud, we don't like Bullcrud, we don't like false hope, and we don't like direct advertising of anything or anyone. If the "questionable links" contain any of the above, then we don't like that either (except maybe some advertising that keeps the site in business, we can choose to ignore it).
I thought that the moderators here were more "hands off" than what eventually ruined the "last" forum, but it appears that human nature being what it is, makes such "hands off" policies difficult to maintain, as some people tend to get a bit more involved than they should and then seek to impose their ideals on others. This may be completely non-intentional or completely ego-intentional. To give everybody a break here is what should be done.
Harley, we all know and love you , and know that you have never tried to be overbearing or say things of a proselatizing (sp?) manner (although you do fling the odd cookie :D)
So what's the big deal. Live and let live. Chill out moderators, you can "wreck havoc" here with us PWP. We often are a bit too sensitive about being censored, and we should be , because we're all subject to the right of free speach, and as I said, Dagnamit, we're all big boys and girls here:eek:

Thank you for your prompt answer.

I reread your guidelines:
You agree that the Webmaster, administrator and moderators of this forum have the right to remove, edit, move or close any topic at any time should they see fit.
(No questions here)

Please refrain from posting links to other communities solely in order to solicit other members to that community.

For links to other websites, the following guidelines apply:
Links in your profile are fine. Link to almost anything you want in your profile page, as long as it doesn't violate our sexual, illegal activities, or profanity guidelines.

Links on a post to anything online are okay, as long as it's your personal site, photos, a research article, a helpful tip, etc. We don't want to see people abusing this by saying, "Hey, I just updated my site" and posting about it every week (which we've seen done elsewhere).
Links in your signature are okay, as long as they are your personal site, a charity, a project or non-profit effort (no commercial links allowed in one's signature, ever).
When in doubt about appropriate content, contact any moderator before posting questionable material.
(Pretty clear)

But you then post a personal thread under these guidelines which says:

Changes from 9/25/06 version:

- Clarified linking to other sites -- making it clear we're most interested in people not using our community to solicit others to join their community. Links to anything are okay as long as you're not doing it to solicit members to another online community.


As I said, I am certain harley is not "soliciting" for the other site, just giving an option.

I amm not trying to stir up an argument, just looking for the right thing to be done.

Peg :)

A few thoughts John.

1. it is ok for others to have CHOICES in their support. No one is "pilfering" members.
2. all of us "old-timers" are here because of draconian administrator decisions made at Braintalk.
3. Neurotalk will do well if left alone. We will see to that.
i would embrace other sites, this is all about helping sick people, NOT keeping score.
4. Neurotalk with sink or swim on its own merits. Giving other options is a good thing
5. according to others who have visited your chat room, no one is ever there. you are competeing with other organizations and people for a limited market. Just let things occur in their own time. It will all work out.

Charlie

PS yes all of us "old-timers" talk regularly and know each other well.

That wasn't clear because Harley's post was only a link to the other site for chat (when the original poster to that thread was asking for times to chat on *this* site).

I'm sorry for the misunderstanding.

sighhhhhhhhhh

Pleased to meet you Laura. John Grohol, 38, father diagnosed with PD 6 years ago. I'm an online publisher since 1995, was involved in self-help support groups online since 1991, have a doctorate in psychology. I have 6 cats, no children, but enjoy all animals (and my nephews and nieces).

I prefer both hambugers and hotdogs, silver or gold, and wear jeans and casual shirts 99% of the time. I really enjoy BBQ. My great grandparents emigrated to the U.S. from eastern Europe (Poland and Czech). My dad loves polkas and my parents are divorced.

I make mistakes, am human, and am far from perfect.

Pleased to make your acquaintance.

Doc John - you have found yourself in the middle of a conversation among several old friends (everyone who has posted in this thread) who have known and trusted each other for years.

Many of us who use the PD board are long timers; familiar with all of the old posters and their ways and woes. Harley posted her link in this spirit.

Harley (and all of the rest of us) - I think sometimes we forget that this is a public forum, read by hundreds or thousands of "strangers" on a daily basis. We feel it is our home - but, in fact, it is a home on view to everyone. (Hey - this really IS a reality show!)

I think it is cool that Doc John is willing to engage us in this conversation. I don't detect any sign of repression - just an honest attempt to understand what's going on here (the same, I think, with Kimmy Dawn's thread on creating a comfortable home).

Maybe the fear of "over moderation" is because we've been burned in the past with moderation gone wild in the absence of any kind of administration. I think we need to give Doc John a break and take him at his word that he is trying to build community and is open to suggestions. He doesn't have a clue as to who we are, yet he has provided a home base; we owe him consideration and explanation. We also should play by his rules - he sounds willing to make exceptions when satisfied of the reason to do so.

Not to start a fire storm, but you guys (she said affectionately to her old PD friends) are coming across hostile (or at least ruffled). Our history of troubled administration on other boards is an explanation, but not an excuse to snub an opportunity to make improvements here in an environment of cooperation and trust.

i sure don't have any problem...
 

.. with ANYBODY linking ANYTHING to this site. WE are all grown ups and can make the decision to go to any site we please on the net, so what's the big deal?
Now i think it's time to define to our moderators exactly WHAT WE DON'T LIKE, and I think that I can speak definitively for most members on this one. WE don't like fraud, we don't like Bullcrud, we don't like false hope, and we don't like direct advertising of anything or anyone. If the "questionable links" contain any of the above, then we don't like that either (except maybe some advertising that keeps the site in business, we can choose to ignore it).
I thought that the moderators here were more "hands off" than what eventually ruined the "last" forum, but it appears that human nature being what it is, makes such "hands off" policies difficult to maintain, as some people tend to get a bit more involved than they should and then seek to impose their ideals on others. This may be completely non-intentional or completely ego-intentional. To give everybody a break here is what should be done.
Harley, we all know and love you , and know that you have never tried to be overbearing or say things of a proselatizing (sp?) manner (although you do fling the odd cookie :D)
So what's the big deal. Live and let live. Chill out moderators, you can "wreck havoc" here with us PWP. We often are a bit too sensitive about being censored, and we should be , because we're all subject to the right of free speach, and as I said, Dagnamit, we're all big boys and girls here:eek:

at the risk of being bold...

sites and their differences..

neurotalk parkinsons..

a good place for people to get much needed pd info and interactions with fellow pwp from both medical information and personal experiences. a text based chat with connections to other chats in other neuro areas.

parkinsonschitchat/parkiejam

a good place for people to get much needed pd info and interactions with fellow pwp from both medical information and personal experiences. an audio/video chat room with morning talk and evening music

parkinsonsprofile

a good place for people to get much needed pd info and interactions with fellow pwp from both medical information and personal experiences. an audio chatroom with evening music

yopa

a good place for people to get much needed pd info and interactions with fellow pwp from both medical information and personal experiences. a text chatroom with set evening hours

edgeoftheforest

a good place for people to get much needed pd info and interactions with fellow pwp from both medical information and personal experiences. a text chatroom with set hours

i am hoping we all find the support we need somewhere..

Sounds good to me and I want to thank you all for helping me to better understand and engage in a conversation about these issues... It is much appreciated, as is your support and participation in our shared community.

John

again at the risk of being bold.. john, may i post the links?

i'm not an old timer here
 

but i love the way you oldtimers stick together, watching each others back. it gives me a secure feeling:) i'm glad i missed the bt thing but even happier that this nt was here (with you guys in it) when i started searching out support and education for my newwly dxd pd.

the guidelines appear fair to me and i think the way the moderators and admins stay involved is vital. that said, i dont agree with all the locks and closings and wiping of posts. imho working through these "growing pains" is the path to a strong community.

kinda wishy-washy but i find myself rooting for each poster in this thread and saying "yeah, thats right, what about that?

Sure harley, and thanks for asking first... Now that I understand, you don't need to ask any permission from me regarding this issue in the future...

john.. if i knew how to make a gigantic smiley face here, i would! thank you!

parkinsonschitchat/parkiejam..

http://health.groups.yahoo.com/group...nsonschitchat/

parkinsonsprofile..

http://parkinsonprofile.com/

yopa

http://www.yopa.org/page/page/1702945.htm'

edgeoftheforest

http://edgeoftheforest.com/

sorry if i am forgetting someone.. hope you guys find the support you need.

Doc John
 

In somewhat of an immature way, not that I have done anything immature before this, I appreciate your interest in keeping us here. Thanks for caring. I would venture to say that you are stuck with many of us for quite some time, links aside.

Paula

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 :grouphug:

:OuttaHere: again!

At the risk of being a metoo...
 

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.

P.S.
 

John,

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

J :winky:

Boy! A guy goes to work and misses all the excitement!
 

Rick Everett. Hillbilly white rat and scourge of the pharmaceutical industry (they just don't know it :D ) 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

Peer Pressure?
 

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

oh yes ...
 

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

:winky:
paula

A community generates its own rules from within
 

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

Responce
 

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..