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

[harley]

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...

[reverett123]

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

[harley]

bingo.. yep

[harley]

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?"

[harley]

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

[reverett123]

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

[reverett123]

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.

[reverett123]

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?

[harley]

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.

[harley]

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

[DocJohn]

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

[pegleg]

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

[chasmo]

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/

[DocJohn]

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.

[harley]

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...

[ol'cs]

.. 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:

[pegleg]

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 :)

[chasmo]

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.

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.

[DocJohn]

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.

[harley]

sighhhhhhhhhh

[DocJohn]

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.

[indigogo]

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.

[ol'cs]

.. 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:

[harley]

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..

[DocJohn]

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

[harley]

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

[oyster]

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?

[DocJohn]

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...

[harley]

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

parkinsonschitchat/parkiejam..

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

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.

[paula_w]

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

[Stitcher]

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!

[Jaye]

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.

[Jaye]

John,

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

J :winky:

[reverett123]

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

[stevem53]

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

[vlhperry]

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

[paula_w]

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

:winky:
paula

[reverett123]

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

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

[vlhperry]

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

[harley]

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..

[CTenaLouise]

A smilee lesson for you- *wink aka ;)

http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/07.gif

http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/07.gif

that second one if the img's were closer it would work/ or maybe not havenot
checked on that for awhile dear harley...

have peace~ :grouphug:

[Stitcher]

I spent the last two days smacking my finger everytime I was tempted to become part of this rukus. And I bet Steve an Carey were doing the same thing...maybe! And I know sure as shootin' that I will be stomped for the second paragraph.

What is this thread all about. It is about responsibility. Taking responsbility for ones own actions. Accepting responsibility for ones actions. Isn't that what we teach our children, to whom we are role models? A rule is in the Guidelines and it was broken (Peg posted a copy of the rule...pretty clear to me, too), the Moderator did his job and there is outrage. So, we then go about blaming BT for our actions and use BT as a pawn to punish the Moderator.

Then there is the use of the word "home" None of the Members who used it in this thread were the ones that stomped upon it in KimmyDawn's thread, but it is interesting that it has been used in this thread and seems to be an acceptable utterance.

Steve said: "I am at home here, and have no plans of leaving"

Carey said: "We feel it is our home - but, in fact, it is a home on view to everyone." and "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."

I am with Vicky and her comments. I attempted to make similar comments in KimmyDawn's thread, but I am not good are being articulate any more. I have written manuals, so I did once have the skill. KD's thread got so "out of hand" I deleted my reply completely.

And, what does BrainTalk have to do with anything and why does it continue to be used as a pawn to justify what happens in this Forum. BT actually has nothing to do with what is happening in here. That is HISTORY...leave it be. We now have this Forum and like anything in life it has rules/guidelines. Should we all dig into the guidelines and do a Wikipedia on them....absolutely NOT!

This forum appeared online one day and we all joined it, and I assume we all read the same guidelines. Now we need to stop the rhetoric and live with them.

Doc John attempted a bit of humor to break the tension in here and got stomped upon. Steve said: "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"

To me Steve statement is an example of what this forum is about we are each others "life preserver". I have not had the pleasuire to meet Steve, nor am I a member of the group that he feels "indebited" too.

While I may live an isolated life these days, this forum and my online work are all I have right now until I can have my car keys back again...LOL It is very sad for me to read this kind of activity in a thread day after day after day. What must the lurkers think when they read it? Is this kind of "discussion" why they never post or reply to anything? Is this not a "home" for them too?

There was a day when I needed this kind of forum as Steve does now, but I am past the needing and into wanting to help, but I find it very difficult to open a thread other than news, which is very sad. Anyone in this forum should feel, comfortable to post or reply knowing that at least one member will acknowledge them.

Personally, while I did appreciate the many, many words I received while I was recovering from my adverse surgical event, I do have to say that I get home empathy and support from my mental health community forums.

If anyone would like to trade place with my son...his email of the 25th read:
So, whats new? Im tired and worn out. Working with no days off or chance to sleep in is killing me. Only about 11 months left till we go home. My body is so beat I cant even walk anymore. Man, this sux. We live on coffee out here. I bought some of the Oakley boots $175.00, so that's good.

[stevem53]

I am indebted to everyone here, including you, and those who havent found us yet..Everyone has contributed something to make my journey through life with pd easier, and I think its basically a two way street for all of us..I hope I have been able to do the same

[Jaye]

Standing up for someone does not equal standing against anyone else.

Disagreeing with someone does not equal attacking them.

Being ignored happens to everyone and does not equal hostility.

Fault-finding and name-calling are sometimes cries for help, which is difficult to offer in the face of them.

Vicki and Carolyn, I will read your posts again to see if you are asking for something that you want or need from me today.

Jaye

[jeanb]

Thank you for your post. Well said - I agree with you whole-heartedly. :hug:

[indigogo]

Carolyn - yes, I was very hesitant to weigh in. At least from a count of the posters in this thread and in KimmyDawn's about creating a "home" (I just went back and re-read it), I am definitely in the minority - a position I don't often find myself in here.

I have been telling myself not to say anything more; but I figure if Vicky can stand up to the crowd and say the things she believes while flaunting popularity, then I can too!

I can figure out why the majority of those who have posted in these two threads are adverse to being "over moderated" because of past actions in another place. That experience was draconian enough to make anyone wary.

But the situation here is much different; the administrative response to objections when speech is deleted or locked has been to try to work with us to figure out a way so that speech can be heard. Far from trying to "fix" our forum, which I think most of us don't think is broken (and I don't think NT believe it is broken either), KimmyDawn's offer to make our "home" more comfortable was a way to expand conversation so that hot topics would have a place to play out. Wouldn't that be better than a swift and unexplained lock appearing? She should get mucho credit to even want to engage us in a conversation in the first place. But instead she got kicked.

And as soon as Harley complained, Doc John was right there - being very patient to listen to criticism, keep his humor, and do the right thing.

The thing that really baffles me is the tone of the posts, which in general is territorial, intolerant and scolding. The claim is "leave us alone - we can take care of our own". But the people who post here and read here are not "our own." And we are only "here" due to the good graces of Doc John and psych central; they would be irresponsible to leave us to our own.

This crowd is boisterious, wise, funny, compassionate, knowledgeable, and sick in the head (literally). And it is usually pretty good, at the end of a controversial discussion, at being able to agree about disagreeing. But having PD doesn't give us the right to be rude, ungrateful, and exclusive.

Carolyn was right - it comes down to responsibility. Especially the leaders and top posters. In-your-face challenges to the administration are not cool; there are better ways to communicate. The folks in charge at NT are to be commended for their ability to turn the other cheek and do the right thing while being slapped for trying to be helpful.

[jeanb]

carey -

Much thanks for such an articulate response- to which I can only add - well said and I applaud you (and wish I could have penned such a terrific response myself).


But the situation here is much different; the administrative response to objections when speech is deleted or locked has been to try to work with us to figure out a way so that speech can be heard. Far from trying to "fix" our forum, which I think most of us don't think is broken (and I don't think NT believe it is broken either), KimmyDawn's offer to make our "home" more comfortable was a way to expand conversation so that hot topics would have a place to play out. Wouldn't that be better than a swift and unexplained lock appearing? She should get mucho credit to even want to engage us in a conversation in the first place. But instead she got kicked.

And as soon as Harley complained, Doc John was right there - being very patient to listen to criticism, keep his humor, and do the right thing.

The thing that really baffles me is the tone of the posts, which in general is territorial, intolerant and scolding. The claim is "leave us alone - we can take care of our own". But the people who post here and read here are not "our own." And we are only "here" due to the good graces of Doc John and psych central; they would be irresponsible to leave us to our own.

This crowd is boisterious, wise, funny, compassionate, knowledgeable, and sick in the head (literally). And it is usually pretty good, at the end of a controversial discussion, at being able to agree about disagreeing. But having PD doesn't give us the right to be rude, ungrateful, and exclusive.

Carolyn was right - it comes down to responsibility. ... In-your-face challenges to the administration are not cool; there are better ways to communicate. The folks in charge at NT are to be commended for their ability to turn the other cheek and do the right thing while being slapped for trying to be helpful.

[Curious]

same with others...i wasn't going to post. i AM a member here. i was a member here FIRST, before members nominated me to docjohn to be a mod.

i searched for help, information and support years ago because my father was having the absolute worst side effects possible from requip. i was scared. knew very litttle about pd. thought my dad was going to die. he sure wanted to.

i was welcomed. taught. given support and made friends. the help i got saved my father.

since that time i have spent years learning and helping people with pd. my husband and i own a health club. we offered to help people with pd from a kinda local group. got really no response, so my husband took it on himself.

he does personal and occupational type training for many people with pd. does sessions with their spouses too.

i was absolutly horrified when he called me yesterday to tell me about this thread. he had looked up the forum here with his clients. right there in the gym at the front desk. i had been so proud and have practily gushed with respect over the members here.

first thing he see's is the admin and mods being bashed for doing our jobs. for upholding the guidlines. bickering. he was beyond embarrassed and so was/am i.

so think about what you post. this is not a forum just for a close knit group of people who know and visit each other. i am glad you have, but this forum is for everyone.

the lurkers. family members. what about those who are in such a state that they can't post, but can only read? people that do not know how or are not interested in learning how to research the web, but come here because others do know how to do it. people looking for others they can relate to. to not feel alone or like an alian, because people in their real lives don't understand.

yes this is a home. a home base for many. but sadly there are so many who have now been turned off by this forum. that is pitiful.

[harley]

i think we need to learn how to give each other the benefit of the doubt. there are obvious differences between a post written with tactful disagreement and those written out of contempt. the moderators do have purpose here and nobody should underplay their hard role of being referree. i have had that role, and it aint easy. you cannot please everyone and it is a rare occasion that moderators, such as john, try to see the whole picture.

as members of a forum, it is up to us to take the responsibility for our posts. often times we are in a set frame of mind when we write, and it may not be for a day or two that we begin to think.. oh oh.. maybe that should have been stated more elequantly. sorry my spelling sucks so badly here. there is nothing wrong with acknowledging we may have been too impulsive. john was a king when he did this with "i am human". that statement itself sums up so much.

it is also our responsibility to try and get over things and move on.. do we want to look for that shoe to drop? cmon guys... lets improve this place by lessons learned. i think we are all accepting enough and smart enough to grow through trials. after all, we do that daily living with pd

[Stitcher]

as members of a forum, it is up to us to take the responsibility for our posts. often times we are in a set frame of mind when we write, and it may not be for a day or two that we begin to think.. oh oh.. maybe that should have been stated more elequantly. sorry my spelling sucks so badly here. there is nothing wrong with acknowledging we may have been too impulsive. john was a king when he did this with "i am human". that statement itself sums up so much.

Thanks for this, Harley!

I too am human: dxd October 24, 1994 (symptoms first discovered by an Internist in 1988), Friday of that week, horrible car accident due to a young woman running a stop sign...18 months of recovery. I have suffered form Major Depression Disorder and PTSD since childhood due to verbal abuse from my bi-polar father. I also suffered the same from my husband and son. The latter of which was the hardest of all to endure. So, I frequent mental health forums for PTSD and Depression.

I have no memories of my childhood...zero!!...no holidays, birthdays, etc. I don't have a family member who has PD, and hope to never have such in my family.

I believe into my soul in Clinical Trials as the ONLY way for us to find a cure or something just a good. I believe the following:

It is only by following your deepest instinct that you can lead a rich life, and if you let your fear of consequence prevent you from following your deepest instinct, then your life will be safe, expedient and thin. -- Katharine Butler Hathaway

Curious, I am so mortified for your husband and his client having to endure this thread. How difficult that must have been for him to be put "on the spot".

Jaye, "Carolyn, I will read your posts again to see if you are asking for something that you want or need from me today." Absolutely no need for you to do this today or any day. At least not for me.

This is my last post to this thread. Personally, although the impact has obvously been made to the membership here...over 1,000 views to this thread...I hope that DocJohn will remove this historical document at some point...it is a poor reflection of the Forum and not good history for someone new to find now or down the road.

[paula_w]

How easily we forget what people do for us in our efforts to get something we perceive we have a right to.

Life is a privilege. All perceived rights are in our "heads". Spend a week at Huffington Post and then complain about freedom of speech. Our disagreements are no comparison to the trash on those sites. I don't think anyone here wants those kind of rights.

What we have here is an outstanding forum, with outstanding administration, trying to be even better. But we will screw up.....then you can go for the throat, lay guilt trips, or you can understand, resolve it and forget about it. Most here do the latter. The key IMHO is - don't tell someone else how to feel.

Paula

[DocJohn]

I do need to say one thing, though, as clarification.

Our community guidelines still exist, and they are not going away anytime soon. My experience with online communities is that, even with the best of intentions and the most mature group of people in the world, the community as a whole functions best with a small, basic set of rules.

I basically waived the one rule here, the one time, when I understood what the intention was. But that doesn't mean the rules don't apply here, or to all the members here. They do and they will continue to apply. It protects all members, even those who feel self-conscious or shy to speak up.

I also want to say this, because I think in the past, some of the community team here, including the moderators and co-administrators, have taken a lot on the cuff while trying to enforce the rules in this forum. And people cry out when they are just doing the job they volunteered to do.

But I will have less and less tolerance for any type of disrespect shown to my co-administrators or moderators. Without them, this community probably would've already self-destructed. Maybe it hasn't all been intentional, and maybe sometimes we forget that these are real people, just like you, with feelings that can also be hurt. They have tough skins, but when they get beat down and down again for just trying to uphold the guidelines, well, enough is enough.

This isn't directed to any particular member here. I just want to make it clear that we will still do our job here and in all the forums, as equally and as democratically as we are able. We're not always right, we're human, we make mistakes. And we'll try and own up to them when we have.

But I ask for your cooperation in this as well. And that if you want to discuss further administrative community issues, please do so on the Community and Forum Feedback forum (because, well, that's exactly what it's there for).

Thank you very much,
John

[kimmydawn]

Yeah, my name is Kim. I live in southern Ohio, after moving here from Hawaii as a teen. I was the daughter of a 22 yrs. marine that passed away two years ago. We moved alot, needless to say.

I live with TN and it's a daily struggle for me, though much better with pain management. The biggest recent struggles for me was my daughter's pregnancy where she found out that she has an auto-immune disease and was very ill because one should not get pregnant with it active. The baby, one month ago today, arrived safely. My oldest is pregnant and due Dec. 7.

I'm raising my four year old nephew and have had him for three years next month. He's my joy and having a hard time adjusting right now. My brother and his girlfrend don't do very well with their struggles.

I like jeans and T-shirts and have recently gone from wearing makeup and doing hair every day, to not. It's a change for me, but I'm glad to let it go. I love to go barefoot and sit on my porch.

Thank you everyone for the kind words to me in PM, and for the words in this thread...

I have something to say with HUGE regret that I haven't said it sooner. For that I would like to apologize to my team members, DocJohn, and the members of this forum who were confused by my actions, or lack thereof I should say. I was dealing with much at the time and shouldn't have started something that I couldn't play out...whether or not I could have predicted some of the response.

I'm tired. I've been tired for six months. I've been dealing with my own pain and dx., but living with some of the biggest fears and concerns that I've personally known in my adult life...the wellness of my daughter and the life/wellness of my first grandchild (now here safely).

I was just coming back to "me" (I'm human and was still dealing with much) when a post of upset was made here on the forum. It was brought to my attention when a member stated that maybe I could help and that the member should keep their head up (paraphrasing). I posted, but because I didn't want to hijack the thread, I began a new one about the comfortable home.

Let me first explain my words there...when I said comfortable home, I was referring that for many here, this is their home forum here at NT. It's just a phrase I use...nothing more, nothing less.

I simply wanted to help, and I feel my words clearly showed that intent. Those that didn't find that help appealing could have stated so...kindly...and many did.

I came here because I'd heard about what happened with BT and wanted to help. Further, I have TN and had never been able too talk with others like me. I was excited. I stay because I'm now committed to NT and care for its members...pure and simple. In that, I care for the guidelines of NT as many expect to read and be responded to within them. I will continue to post within them, and I will continue to uphold them for the whole, fairly and as consistently as possible.

That's me, and I will continue to be me and be here...again, because I care.

KD

[paula_w]

Kimmydawn,

Thank you for the post, I can relate to your personal experience directly in my own life.

I'm sorry for my ignorance, but I can't think of what TN is.

Paula

Adding - I used to live in Hawaii too!

[kimmydawn]

I apologize. TN = Trigeminal Neuraligia = pain in side of face...nerve pain.

In my case, I'd had a large cyst in my right maxiallary sinus that required a procedure in which they cut through many nerves in my face. I actually had this particular procedure twice...four in all. The last probably not necessary as my pain was stemming from either the damage from the original cyst or the first surgery.

I dealt with it for 16 yrs. with no dx and ER visits for pain. I lived in fear of my pain and even thought I was crazy at times.

My life has been so much better since the dx and management. :)

Thanks for caring to ask. :)

KD

[paula_w]

Thanks for the explanation and that's encouraging to me..I'm seeing a pain management specialist (everyone is a specialist) today for the first time.

:winky:
paula

[kimmydawn]

pain management saved my quality of life. i do have a good dr who is also a neurologist, so that helps. he hears me when i say that i don't want the "hard stuff" and that i'll manage what i can on my own, etc.

please make sure your dr hears YOU.

i'm available by PM if you have any questions. :)

KD

[chasmo]

I do need to say one thing, though, as clarification.

Our community guidelines still exist, and they are not going away anytime soon. My experience with online communities is that, even with the best of intentions and the most mature group of people in the world, the community as a whole functions best with a small, basic set of rules.

I basically waived the one rule here, the one time, when I understood what the intention was. But that doesn't mean the rules don't apply here, or to all the members here. They do and they will continue to apply. It protects all members, even those who feel self-conscious or shy to speak up.

I also want to say this, because I think in the past, some of the community team here, including the moderators and co-administrators, have taken a lot on the cuff while trying to enforce the rules in this forum. And people cry out when they are just doing the job they volunteered to do.

But I will have less and less tolerance for any type of disrespect shown to my co-administrators or moderators. Without them, this community probably would've already self-destructed. Maybe it hasn't all been intentional, and maybe sometimes we forget that these are real people, just like you, with feelings that can also be hurt. They have tough skins, but when they get beat down and down again for just trying to uphold the guidelines, well, enough is enough.

This isn't directed to any particular member here. I just want to make it clear that we will still do our job here and in all the forums, as equally and as democratically as we are able. We're not always right, we're human, we make mistakes. And we'll try and own up to them when we have.

But I ask for your cooperation in this as well. And that if you want to discuss further administrative community issues, please do so on the Community and Forum Feedback forum (because, well, that's exactly what it's there for).

Thank you very much,
John

john;

I run a 1097 member DBS Surgery group. To date we have in excess of 21,000 posts.In that time I have censored 2 posts and kicked 1 person out of the group. it;s been my experience that if you let people know whats expected of them, they will self-police quite nicely.

I'd remind you that just because something offends your sensibilities, that doesn't necessarily offend ours. Often offensive posts are a cry for help. We cannot respond to this if the post is deleted.

We are all here to help each other. Please be circumspect in applying your rules.

Dear Curious;

I am sorry you are embarassed by us. We MUST become thick-skinned about things. I have been accused of being drunk, shoved out of the way for moving too slowly in the mall, etc. I have fought with members here. ( love ya Tena!!)Yet we always greet each other with a big hug. There is only one PWP that I have no use for. All the hundreds that I know, I think the world of.

Sometimes life is tough; we all need to learn how to get through it. ONLY another Person With Parkinsons can understand what we go through. This is not saying that you are not a caring individual, I am saying that you all, (thankfully) do not know what we go through. Rules that apply to the public at large simply do not work for us.

Anger is a useless emotion here. Caring about your fellow man is what it is all about.

If you strike a post or kick someone out, you have failed in your duties, IMHO.

We can self-police and do many times. It is usually non-PDers that cause trouble.

Please wield your power with caring and respect. Look at things through our eyes, (or let us look for you).

I bet I could get at least half your support group to take you up on your offer of help.

TOGETHER we can make this an even better forum than it is now!

Charlie Black, 57
Originally from Richmond KY. Grew up in Orlando, FL

17 years since my diagnosis. bi-lateral DBS-STN at UCLA in 2002.

Graduated from University of Central Florida with a degree in theater in 1972. Worked at Disneyworld for 3 years, doing stage and film lighting.
Moved to Hollywood in 1975.
Did commercials and features for 10 years
Then sitcoms as a chief set lighting technician.
Head of the Class, my Two dads, ad infinitum

After my diagnosis, I quit being a chief set lighting technician and started operating computerized lighting consoles. Finished my career in 2004 after 8 years on Frazier.
married to a wonderful lady, Bonnie. we have 5 children (and 2 dogs, 2 cats, and 2 birds!!) girls 22,19,17 and twin boys 13.

My wife does theme park entertainment and operations costumes for Disney world wide. I can always find her in a crowd, just follow the laughter!! She has done it all!! 2 Superbowl half time shows, Tokyo Disneyland and Disney Seas, Paris, Hong Kong to mention but a few.

[reverett123]

The interest and emotion in this thread has been unusually high and yet we have been pretty civil about it. I'm proud of us, actually. From docjohn on down, we have done pretty darned good.

I will raise one point that is worthy of thought - who "owns" this place? Now I know that docjohn legally owns it but the question is a little trickier. Who "owns" the community? If docjohn pulls the plug it is gone. But if everyone stopped hanging around it is just as gone. Even more tricky is the fact that if the people we each disagree with go, the community will be blander and less robust. I think the answer is that we all "own" it in that we all create it and we are all needed to make it the best we can. But with "ownership" goes responsibility.

It was before my time but is there anyone who was involved with the WELL (Whole Earth ELectronic Link)? I seem to recall them struggling with some of this but it seemed so arcane then.

[Ellie]

I wrote this and posted it in the admin forum on the 23rd because I knew I needed it off of my chest, but I knew I'd probably lose 'my job' if I put it on the public forums where it belonged. But honestly, I can do my job which is to reach out my hand when someone is in need without this title, so by all means - just take it away from me if what I am about to do deems disciplinary actions. I don't see myself being banned as I am not personally attacking anyone, but instead - defending those who are attacked constantly without action taken towards those whom I feel are guilty enough to at least issue an apology but are too wrapped up in themselves they can't. If I am banned, I guess it was worth it and my only loss would be those people I feel I can help via sharing information, support, etc. - which is what I thought this website was for. Not a home for cliques who picks who is worthy of visiting their forum.

This doesn't belong just here, it belongs all over the forums in every area where things like this take place. This thread in specific, is just one I selected because I know while some people aren't posting here, they are reading it and they need to read MY OPINION. We are all entitled to one, right?

This may be my final post depending on exactly how far I plan to take this. I say this because today I am taking it personal and I am most certainly making it personal.

I am going to make one thing clear. First and foremost, I am not stupid. I know the difference between a debate, a disagreement and someone being downright mean and bullying.

This probably isn’t the best time in my life for me to be doing this, and I am pretty sure I am on the verge of a meltdown – or possibly having one as I type this. This is how my week started.

I had 9 vials of blood drawn, which is the third time this has been done in the past 9 days. I look like a heroin user. I have been having my womanly cycle for the past month, literally. My partner finally admitted to being sick of me being sick, which was perfect timing as it was a moment after I had accidentally not made it to the bathroom in time and threw up on our white carpet. My brother left rehab after an outstanding 2 day stay and continued to call me 32 times with various suicide threats which he frequently does when I won’t give him money. I only order him a pizza because I do not want him to be hungry. He left the worst goodbye voicemail on my phone which triggered my gag reflex prompting me to throw up, which is something I’ve done so many times this week I’ve lost count.

I am being treated for Lyme Disease which is quite unpleasant considering I already have enough pills I have to take every day that I am really just tired of taking them. Within 15 minutes of taking a pill, I throw up in the most violent manner it made my morning sickness 9 years ago seem like a day at the park. I don’t know if it’s the Parvo or the Lyme, but whatever it is causing this pain is the closest to hell I ever want to be. It has gotten so bad I cannot even walk up my own stairs to sleep in my own bed. I cannot finish folding a small load of laundry because my arms shake due to being so fatigued. Every part of my body that bends is swollen. This is not where I wanted to be when I was 30. I did not want to collect ‘ologists’ as my hobby. I wanted to work at an animal rescue. But I can’t work at all, because it’s constantly one thing after another.

It’s not like I even complain about it every day either. As a matter of fact, I don’t even say anything half of the time I am sick or in pain. I suck it up and hope it passes as fast as it showed up. But this time, it’s not passing – it’s staying and it’s constant. I can only hope my tray of needles with cortisone I am expecting next week will offer me some comfort because at this rate, I am turning into a very bitter person who loathes waking up.

Do I want or need pity? No. I have been sick, literally, since I was an infant and guess what? There’s millions of people out there worse off than me, people who have felt worse pain; either physically or emotionally for years with no control over it (or even worse, having no feeling at all). There are people out there who are in pain but haven’t been given a diagnosis so they don’t have a group of people fighting for a cure for them. They have nothing but hope. You see, I don’t believe one condition be it diagnosed or not is more ‘valid’ than another. Some things hurt people in different ways and regardless of the manner – they are still people with something they shouldn’t have to deal with. Do I feel worse for people terminally ill than I do people who aren’t terminally ill? No. Because we will all die, it’s something you cannot escape. I don’t think people should have to have their lives shortened, or people have to live their lives into the ‘acceptable’ age of natural death but be in pain up until those days. I think a broken heart is just as painful as a broken leg.

I don’t think how I feel now is a reason for me to be mean to people and I was worried this may sound mean, but right now - I am making myself feel worse sitting here dwelling on how upset I am. I was told yesterday they probably cannot reverse what’s been done to my body. So now I am sharing the same symptoms my 85 year old Grandma has, the difference being she earned hers with age. I have never ever thought to myself, though. If someone, for example, my friend was having a bad day – man troubles or something. Or she just wanted to do something girly and cheesy or wanted some peace.. I didn’t sit there and scream “I have Epilepsy!” in her face and assume she is selfish for wanting things to be ‘peachy’ or think she doesn’t understand me, or whatever. I can’t even fathom how I can say any of my conditions are a card to use to lash out at someone. If I’m having a bad day and I’m cranky, sure – my loving partner may end up hearing a bit of an attitude. But would I be mean to him for wanting to help me? No, that’s absurd.

I am sure those I think are guilty of this could easily read this and know exactly what I am talking about. And I am sick of it. I have so many bad days, bad weeks, bad months and bad years and never do I use them as an excuse to pick on people. It may seem that way now, but I’ll chalk it up as icing on the cake. It is something so petty that I can’t understand why it goes on.

I can’t help but think that people want to view us as usernames or avatars, but still find it completely acceptable to lash out at us like we are humans. It’s a huge contradiction. Mods are invited to say something and in some cases, requested to intervene and then lashed out at and ‘kicked out’. It is almost like some people enjoy this because they know we are expected more to watch our words and always be civil. We’ll fire me then, because it’s about time the tables turn.

I am sick of the same group of moderators being bullied by the same group of people. It isn’t just debates or differences of opinions. It is people blatantly baiting them in just so they have someone to toy with and it is sick. Maybe everyone didn’t have a Grandmother. Most people I know their Grandmother told them the golden rule, “If you don’t have anything nice to say, don’t say anything at all.” My Grandma said, “If you can’t say anything nice, keep your mouth shut.” Whatever the wording, it applies. The Guidelines and TOS have nothing to do with this, it is masked and subtle baiting and it’s gotten too old for me to sit back and let people attack others.

People who don’t openly say they are fragile, people who are having family problems, marriage problems, health problems, etc. Just because it isn’t laid out on the table doesn’t mean you have to treat them like they are made of stone or they are your personal punching bag. I am fed up with my friends being hurt when they have enough to deal with as it is.

Kimmy has been nit picked at for so long I lost track of time. No matter how subtle it is, as stated I am not stupid nor am I blind. Someone who tries their hardest to help out does not deserve to be treated in such a manner. It’s hard to believe someone is lashed out at for being nice. Like somehow being nice or wanting peace is bad? Guess what? Everyone hurts in their own way it is NOT nor will it EVER be a reason to treat someone in a manner that some users and staff members have been treated. I am very fortunate that I have not had to deal with this –yet- but it doesn’t go to say it does not have any impact on me, because it does, when I can tell others have been hurt by the actions of someone else who were behaving in such a selfish manner they have grown blind to all other people with other conditions and have it set in their mind only one physical or mental state truly can be validated.

This is a place where I would come to help people, and to get help. To discuss things and to share information. There are so many websites where it is welcomed for people to attack one another, it upsets me to see it here no matter how veiled it may be. There are so many small communities within this community it would be impossibly for everyone to agree. But it is very possible some people grow up and just use the Grandma Rule and not even say anything if you can’t say anything nice – or at least MATURE and RESPECTFUL.

There, now that I have that off of my chest I can maybe go back to recognizing people who use this forum for it’s intended purposes. A large number of us all over this website have been discriminated against. I, personally, have never decided that since someone discriminates against me that I should do the same to others. Never. Ever. Period.

If it is my job to watch people demand a raised level of treatment and try to justify discrimination against others, and belittling others - then this is not the job for me. You can flame me, or even get my post deleted. But this will be the day you can all remember the quiet one in the back finally cracked and stood up for her friends like she should have from day one.

[paula_w]

:)I'm honored you chose to express yourself here. Truly, I don't understand all of what you see....but personally I could use a little perspective..but, I'm not really wanting to go high drama.

You haven't cracked....forget that!
Paula

[DocJohn]

We're not like other online communities, and that's both good and bad. So unlike some online communities, I won't just let an "anything goes" attitude. I've seen too many vulnerable people get hurt in such communities, and while that may be fine for some, it's not fine by me. We're also not the kind of community that is all about controlling people, or having 150 rules you need to abide by. We have, what, 10? And most of them are fairly straight-forward and full of common-sense. Nothing on that list should raise anybody's eyebrow for a moment.

If everyone treated everyone else with respect and decency and treated them as they would if they were talking to them face-to-face, things would be easier. But sometimes we forget there are people behind these nicknames...

I do *not* see having to edit or remove a post, or suspending a fellow member, a failure of *our* "duties" here. I think it's disrespectful to suggest that just because this community has a *different* way of administering stuff than your community, it's somehow "lesser" or "failing." Really, it's simply two different ways of doing something.
Our duty is to provide a safe, supportive and reliable health support community, and we do that always with the utmost care and respect for the people who come here. People are requested to read and agree to the community guidelines before they even sign up here for membership now. And if someone crosses a line, we always PM them about the line, how they crossed it, and how, in the future, they could avoid having to cross it again (long, long before anyone is suspended). A lot of time, energy and effort is spent on these things, and anything of consequence is always discussed amongst the entire community team before any action is taken. A team comprised mainly of members like all of you.

John

[chasmo]

I am so sorry to hear of your plight. IT sounds like my aborted attempt to take Permax. I could not keep anything down and what little i could eat stopped me up so bad...well really bad.....

You gotta believe their is an answer to your plight. Do something for your self, such as Yoga.
when you are up to your ***** in alligators, it IS hard to remember that your original objective was to drain the swamp!!!

The good news is that this too will pass, it always does.
It seems hopeless at times but it isn't.
Are you being treated for depression??
counciling and a antidepressant would help you get through this rough time in your life

big parky hug for you!
Charlie

[chasmo]

If everyone treated everyone else with respect and decency and treated them as they would if they were talking to them face-to-face, things would be easier. But sometimes we forget there are people behind these nicknames...John

very true, this is a one-dimensional medium


I do *not* see having to edit or remove a post, or suspending a fellow member, a failure of *our* "duties" here. I think it's disrespectful to suggest that just because this community has a *different* way of administering stuff than your community, it's somehow "lesser" or "failing." Really, it's simply two different ways of doing something.


John

I hope this doesn't mean we are going to "give up" on folks just because they are disagreeable at first. Hell, I was an *** when i first started on BT!!! there is no right or wrong way to administer a group. every situation is unique and deserves some thought and discussion.
Just think " there but for the Grace of God, go I" then think about your course of action.

[shiney sue]

If i spelled that wrong i'm sorry,fell on my head,2 days in a roll,couldn't
fiill my darn feet and transfer and dang down i go...I have polyneuropathy's,
and 2 many years of other painfull things, mine and for year's other's
(truma er nurse)...Lately i sure hope i was kind,i know i whispered you
will be ok..But maybe i should of whispered your dying anything you
want me to say to friends ,loveone's..I like the rules here,haven't seen alot
or fellt alot coming at me..A now dear friend i met here told me to read it all,
i think were all different in illness and as people.. But regardless pain is pain
no matter what you have...Well i like most,if someone ticks me off,i'm
the one who turn's the computer off,or move on to something else. We all
have that right,at first i thought wow C. is a trouble maker,than i smiled
no more than you are...I don't care who put this together,i needed it
so thanks..I hope nobody hits the road,i'm not,i know who cares..Only
i do,just me...Many Blessings Sue For those who move along reading
someday they just might speak up,took me a long time to do it...

[therese]

I "swore" that I would not become involved in this thread knowing full well that where there are diversities of personalities, there will be diversity of opinions that will invoke discussion/debate. This is a "given"...and a good thing in and of itself...even a learning/educational process that can evolve from such discussions/debates IF conducted civilly and courteously...and that means no diguised rhetoric, i.e.blatant disrespect toward another in the guise of "just my opinion". This reminds me of the phrase: "You're entitled to your opinion as long as it's the same as mine"!!! In the same vain, "You can't please all of the people all of the time"....Or, could it be as simple as to "agree to disagree" and stand by that? It seems to me that the most important thing for all of us to remember is that we are here to support...not to subvert...not to squelch. Sometimes, we have minds that are "set in stone"and this never allows for good, honest, sincere discussion/debate.
As for guidelines and monitoring the forum to assure that these guidelines (only 10 as John mentioned) are concerned, I cannot imagine a place like this WITHOUT these guidelines and WITHOUT those who administer and assure that these guidelines are followed. I can only imagine utter chaos. We all read these guidelines in the process of registering for this forum...perhaps hurriedly and without much thought as to the essence of what was being said in which case, a reread might be in order. I want to say on behalf of the moderators/administrators, here, that I have found that they have done...and are continuing to do a very good job to maintain a safe haven for ALL. Yes...they DO adhere to the guidelines, but John has clearly explained the exact method...what steps they take and for what reason...what one can do IF he/she needs to "dicsuss" a particular problem/situation...the consensus that takes place among the "team" before rendering decisions about any "posts" that might be counter to the guidelines, etc. Perhaps it seems all too simple to me, but from my perspective, how we conduct ourselves, i.e., with respect and decency toward each other is really the "key", here...and, I will just add that we all might do well to "hold back"...reconsider our "posts" (especially if/when very contraversial) BEFORE hitting the "submit"button!
I have given a tad more than my two cents, here, and it just may be that some could resent what I've said...especially in that I am a relatively new member at NT...I post rarely...AND I don't have PD but am the carepartner to a pwp...but, it seems to me that this should matter not in the grand scheme of this thread...but, still, you may ask: "Who asked her anyway"? I sincerely just want this forum to stay intact...to be that safe haven for ALL who come here for support on this PD journey.

Therese

[steffi 001]

...that a caregiver,NOT someone with the illness herself,has laid herself wide open to response on this forum.Your voice Therese is as important, if not at times,more so than ours.You carers give a wonderful,valuable insight as to how it is to be on the sometimes [not in your case necessarily] the receiving end of the hurts,the frustrations,the burdens of PD.How wonderful that you are fighting for this forum and I for one,wish to say a heartfelt thank you.We can all get so wrapped up in dealing with this illness that we forget about the pain and struggles of those around us. This is a wake up call.

As for the management here,I can only express my own personal gratitude...but that is not negating Harleys initial sense of disillusion.I don`t for one minute believe she had dishonourable intentions and it is uplifting to see how she,and Doc John,have resolved this conflict and have remained respectful of each other.Back to my support of the moderators When I threw my wobbly, [ugh] the unbiased support I received was second to none...both via pm and publlically.They remained neutral throughout and non judgemental,affording me the time to slip back on here when I was ready.No pressure,no condemnation,just patient,gentle and wise guidance.

Although I haven`t been compelled as of late to either start a new thread or add to one [I am fighting my own battle here back home] I know for sure I would miss this forum if it were to dissolve.Many a sleepless night would have been made unbearable were it not for the option of coming here,to join my "friends" and support system.Yes..this has been my major lifeline...a place where I could safely vent,wade through reams of information [if I were patient enough] share in the agonies and ecstacies of peoples lives,support or raise a smile where necessary.It has both afforded me the opportunity to both RECEIVE and GIVE....both fundamental to a hhumans purpose in life.

I have sometimes written and then hit the SEND button thinking "Oh you PRAT !" but have relied upon the understanding and patient nature of all who are onboard,to not make me walk the plank...because I have bombed.

Believe me...THIS is the single,solitary unique place where I can kick the cat off the hearth and not be hauled over the coals for it.For I cannot do the same back here in the so called comfort of my own home.
And my guess is,this just might be the ssame for many others.

Yes..this forum has peaks and troughs....jusut like life really....but at the end of the day...it is my LIFELINE..and so are the folk who are on it.

Thank you to all of you.
And Doc John..how nice to see the face behind the name.Can you pop in more often x There...have sent you a kiss.Now you can`t refuse that can you?

Love
Steff
x
:grouphug:

[Vicc]

I was just cruising "Who's Online" to see what people were reading and I came upon a moderated thread. Never heard of one of them before, so I naturally had to look. Wow. I knew I wasn't gonna post here. I watched the initial response to John's request for clarification, and couldn't believe it. Then I watched the tide shift and there was no reason to add my 2 cents.

But I was at BT when things were at their most chaotic. I was part of the chaos in that I was in a months long running battle with another member: I thought she was deliberately distorting my words and couldn't resist the temptation to tell her so. It got pretty ugly and finally JL hisself got involved. He literally told us both to sit down and shut up; I shut up and she didn't and eventaully got banned.

Looking back, I see that the disruption that battle caused was hurting other forum members, who hadn't come there to watch a war movie. I'm not cured, in fact, I recently saw one of my "shoot from the lip" posts deleted, and I was mad as Hell. Said so too. (Privately). Then I wrote a post that wasn't quite as openly frank.

Outside of the Ten Commandments, I don't think I've ever seen a list of rules I completely agree with, but I obeyed traffic laws when I could still drive, and I know that posting here is a privelege, and it is the one place I can get together with just about all my friends. These priveleges are so important to me that I try to stay within the rules.

Anyway, things finally settled down a bit at BT, and I think JL went from being too permissive to being too rigid and intolerant of any criticism. When it crashed and some of my friends told me about NT, I came over, felt more comfortable here than I did at BT, and I'm still here.

I think JL got too authoratative and it hurt BT badly. I personally think DocJohn went out of his way to be gentle when he asked for some clarification about the links, and those first responses were downright churlish. I got a little pissed at him for his later posts: I thought he should be somewhere between JL and being so willing to compromise once he understood that the links weren't recruiting posters. Instead of just saying that "Rules are rules", he still tried to reason with what I feel were unreasonable people. Maybe I'm just too crochety in my old age, but I'd have gone with "Rules are rules".

I decided to post when I saw how many Administration people were hurt by what happened here. I figure I've given mods (here and elsewhere), a fair ration of grief, and this is a good time to make a stand with them.

It may be that two posts about how great NT is and thanking the administration for making it possible, may look like evidence that I've mellowed in my old age, but I think its safe to assume I haven't seen my last PM from a mod; and I doubt these two posts will transform me into a "teacher's pet". I certainly hope not.

Meanwhile, a couple of people owe DocJohn an apology. He did not deserve the response he first got...Vic

[paula_w]

Well Vicc I don't know you but that seemed like an exceptional post and you sound like you are responding kindly to being treated kindly. Gee what a new idea....haha. Why is it so hard to learn how to always do that?

And the older and yes sicker (I have never been in denial - been just about everywhere else including really confused and defensive and a little crazy really. IF you use that word kindly , the meaning of crazy becomes ok to use. - i just now made that up....but it's true IMHO- its an honest thought. But upon editing, I see not a complete one.....

So Vicc, I think you saw something we used to call disrespect. I did too, and am going to work hard at not having that come from me because it will ruin a forum and the next thing you know the site has been taken over by a drug company. This is truly an independent forum

And we want to keep it that way. It's a Gem.
Don't you agree Thelma?

KD I got your private PM about living in Hawaii; I have a good long one to write back....lived there a little more than 10 years, had my first baby there, married there. Editng to say: I got married first.. I swear.

...Paula

[harley]

vicc.. trying to place you in bt?

[Suffolkchris]

Just got back from two weeks vacation so have just read all this lot in one go. GASP ...................

Is this meant to be a select club for old BTer's or does it want a broad based PD membership? What ever the rights and wrongs of the main issue it sure don't look inviting to any prospective new members or long term lurkers to join if they read most of what's been posted here!!

Like many others here I am also a member of other PD Forums and I have in the past posted a link on some of them to this site, rightly or wrongly.

I thought this might be an appropriate moment to provide a link to a fairly new UK based PD Forum. Not to try to poach members from here, it's almost certainly too "British" for most here anyway, but to show how a light less aggressive Forum style can work - I thought PWP were supposed to avoid stress at all costs? Something about Seratonin levels and medication effectivity?

http://pduk.org

Anyway if this is unacceptable DocJohn please edit and I promise I will not complain. But a bit of balance at this point may not be a bad thing at all. But if you do edit the link please delete the whole post because it is pointless without it.



Chris :)

[indigogo]

Seems that this thread has had cathartic benefits. I loved and was moved by what the moderators and others without PD who don't visit here regularly had to say. I am thankful that I am not currently living with physical pain (a claim, I know, not every person with PD can make), and humbled to read about the sufferings and strengths of the wider community. The worse thing about living with a chronic illness, for me, is the isolation it brings. I have to fight to not let it cut me off altogether; NT is one place I can come to help keep me connected.

[harley]

Seems that this thread has had cathartic benefits. I loved and was moved by what the moderators and others without PD who don't visit here regularly had to say. I am thankful that I am not currently living with physical pain (a claim, I know, not every person with PD can make), and humbled to read about the sufferings and strengths of the wider community. The worse thing about living with a chronic illness, for me, is the isolation it brings. I have to fight to not let it cut me off altogether; NT is one place I can come to help keep me connected.

carey... after seeing you in action, i want to bow at the mention of your name. you are one amazing woman and i wanted you to know how much your contribution has made a difference in my life. ya know sweets.. you live not far from me.. somehow we must get together.. love ya.

[paula_w]

How to explain without hurting any feelings. After being here for a long time, needless to say I've read and been in a lot of disputes.

It's hard to have to moderate these disputes; I wouldn't want to do it. I usually feel that people should be able to disagree publicly and even if they get somewhat angry, there is a way to get a point across and move on.

What bothers me much more than two people who are having a dispute, are the people who scold and lay guilt trips on them. [excluding mods, whose job it is to control it]

This has always been an agressive forum, a difficult place for ideas to be accepted. It's what we make it. I think we have built a place where we can disagree and talk about many of the taboo subjects not too offensively. When i first came here, people of faith were pretty much told to keep it to themselves.

Chronic illness that will kill many of us brought us here, but there are those who insist that you leave out what people need to talk about sometimes.

Ok so we have rules.

I am sorry i know this is going to step on a few toes and I hope you can try to understand - don't think if you have done this that "i don't like you" or 'I am mad at you.'

We are not here to perform for anyone else. It's good to think of the readers, but it's not my job to impress anyone or put on a dog and pony show. Chronic illness means pain and death, and if we get angry or blow it sometimes, readers who do not understand have other choices, which John granted permission to post about.

I"m here because i'm in real trouble health wise and probably won't live a very long life. There's no need to beat people up and criticize on top of it. What do they call those things that feed on their own? liberals? ....oooooooooo...just kidding! There that will give somebody something to complain about.

Olsen's signature line describes it very well...we are here to help others...don't know what the others are here for. IF you aren't part of the solution, you are part of the problem.

I paraphrased a bit sorry Madelyn.

Last thought...there is only one basic reason IMHO for why there are topics we can't discuss. IT's called hate.

As carolyn said, we have to take personal responsibility.

Paula

[reverett123]

...just ignoring a particular thread or post is not enough to handle all problems but it seems that way.

More to the point, the legendary Parkinson's personality may be part of the problem, might it not. We tend to be a pretty hard headed lot and used to calling the shots. Put us all in the same room and it is bound to be interesting.

[harley]

bring your steel toe boots, hankies, shoulders, and dancin shoes.. bound to be a party!

[Vicc]

I thought I'd said everything I needed to say in my last post, and I'm pretty sure at least four members of this forum (and possibly the Administration) will wish I had left it at that. Sorry, I'm back.

The PD forum has the highest number of posts at NT, but the entire first page of this thread was written by two people; people who apparently believe they don't need no stinkin' rules. Most of the posts just referred to were themselves violations of the rules here: Public airing of disagreements with the administration.

They were complaining because one of them had violated another rule and felt mistreated when DocJohn did what the rules said he would do; delete the offending post.

Later, after DocJohn had tried to reason with the first two, a 3rd member dropped in to teach John how one should properly run a forum. I thought those posts were self-righteous and condescending; I don't worship DocJohn for creating or facilitating NT, but I'm grateful that he did, and I don't think he should be talked to like a miscreant because someone doesn't like the way he does things.

The rules in my house are that you don't disrespect a man in his own home. That's always been the rule, and I'm sure my kids weren't too happy with it more than once; especially when I ordered my oldest son to leave my home. But my kids still treat me with respect in my home -- and they treat me with respect the rest of the time too.

I didn't kick my son out forever, I told him to leave until he could get his mouth under control. I wonder if that might be effective here? I'm thinking that a couple months without NT might give some people a reason to want to play by the rules.

The real reason for a 2nd post, however, is the reappearance of the two who dominated the first page on this thread. I had hoped that the response from others outside the PD forum might have chastened them, but apparently not: they are back and almost performing victory dances. They apparently feel they somehow won something, but I fear it will be a pyric victory; emboldening them to further excesses and possible banning.

There has been a lot of talk about JL and BT here, and mutterings about his apparently near-maniacal banning of good people just before the crash, and I suppose that might be what happened. I know I was a thorn in his side for a very long time, and the only time he threatened to ban me was fully justified.

I didn't agree with his policy of banning people for public protests, but I was aware of it and unwilling to die on that particular mountain. I don't like the way some things are done here either, but that's just not my mountain. I fear that DocJohn's temperance has led these people to think they can climb the mountain and live forever. I don't think that's the way it will turn out.

In case you didn't get the message: Go back and reread the posts and count the "thanks" thingies. People who would never invade another fourm to address misbehaviour came here and did just that. We said we stand with DocJohn and the mods. You can't celebrate and begin this crap again. If you do, you won't find much sympathy when the hammer drops.

Having said all that, I now offer a self-righteous lecture to DocJohn: Ya shoulda just said "rules are rules"...Vic

[indigogo]

Vicc, you said:

"The real reason for a 2nd post, however, is the reappearance of the two who dominated the first page on this thread. I had hoped that the response from others outside the PD forum might have chastened them, but apparently not: they are back and almost performing victory dances. They apparently feel they somehow won something, but I fear it will be a pyric victory; emboldening them to further excesses and possible banning."

on the contrary, their appearance now has everything to do with the very nature of the disease itself, the PD community in general, and this PD forum community in particular. it has to do with forgiveness, understanding, humor, reality, and life.

this thread has been a wonderful opportunity to hear from people from all forums and from the administration. but in the end, it comes down to and back to us. Parkinson's disease does things to our brains and lives that no one without the disease can possibly understand but another person with PD. Other diseases, including other neurological diseases, have their own set of peculiarities and circumstances that we can only imagine what must be like to live with, but never know the true experience.

all of the comments from people with PD on this page of the thread in particular are recognizably and comfortably Parkinsonian. they are predictable, headstrong, cranky, jubilant, realistic, irritating, hopeful and completely familiar. just like a family around the Thanksgiving table.

p.s. Harley - you have the heart of a lion and the soul of an angel! will I see you at the Seattle NWPF conference in November?

[harley]

wwhhooooaaaa...

one question first...then i will need to digest this before i answer further..

have you ever been an administrator over a forum?

[harley]

reason i ask is because i know the difficulty of being one. john has a very hard task and his decision to be part of the discussion should be commended. his quest for a solution should be applauded. it was a difficult circumstance for an administrator and the outcome of it should be viewed as a victory dance for nt.

there is no need in my opinion to further hash over what decision john has made. the thread holds many opinions from intellegent people speaking their minds. i think john has read each and every one of them. as an administrator, he took every thought from every post and came to a decision. we are fortunate here to have such a captain.

scuze me for a bit.. think i will go be human for awhile... peace to you vicc.

[Vicc]

I'm beginning to understand that age is tied to wisdom for many reasons, but one of them must involve learning from past mistakes. We try to get it right the first time, but don't always succeed, and how we respond to our mistakes must be a measure of wisdom. I want very much to become wise.

One of the lessons I've learned during several years of being at the center of a controversey at my Internet forum is to wait. When something ****** me off, wait a day before doing anything. I didn't do that today (yesterday).

I read the words: bring your steel toe boots, hankies, shoulders, and dancin shoes.. bound to be a party!and I got mad. No problem with that, but I didn't wait.

If I had waited, I probably wouldn't have made that last reply. It wasn't necessary or useful. What went on here was a squabble and DocJohn handled it well. Even if it turns out that I was right in my second post, it really is none of my business. It was ok to take a stand with the Administration because I felt that DocJohn and others were feeling hurt that their attempts to keep this a safe place were not appreciated.

It was not ok to demand unconditional surrender from the insurgents; things will work out as they will and I don't have a horse in this race. I was sorry I published that reply as soon as I read the posts that followed. I shoulda sat down and shut up.

So how do I deal with my mistake? Deleting the entire post would have pretty much hidden it, but that would have left the subsequent replies hanging in the air. I've had that happen to me and I didn't like it at all.

Quietly withdrawing was an option, but that would have left some people angry and upset and I don't like that sort of legacy.

So my only real option is to apologise and let the people who have a stake in all this work it out without my help. I should have waited a day; I'm sorry I didn't. I hope I have learned something from this...Vic

[aftermathman]

are we all finished here and can we just get back to using the forum for the purpose for which it is intended, (in my case that means more posts about Spheramine, and the Rugby World Cup, I'm nothing if not predictable).

DocJohn, you could have sold popcorn for this one :)

Neil.

[DocJohn]

I want to thank you all for your contributions, feedback, and most of all, your compassion and understanding in this thread. I don't want to belabor the points made here, I think we all learned something (I know I did), and I feel better about both sides better understanding one another's point(s) of view.

Take care,
DocJohn