Sigh...How does a cybercommunity function?

[reverett123]

I will avoid a specific subject in order to make the moderators' lives a little easier and mean this as a sincere topic.

How does a group like this manage to avoid slipping into a state of "lowest common denominatorism"? I know that it can be argued that this is about PD but it is obvious that we talk about everything that affects us as well. And I am sure that it is not just us since the same problem would surface in any forum. I don't think we want to slip into the "Ask the Doctor" mold or the "Pity Party" one but for the life of me I don't see how to maintain community without disagreement.

Given the way vBulletin operates this place is kind of like a big house with a lot of rooms and so should have a place for everybody. But the rooms have no doors so people wander down the hall, stick their head in, and get upset. :)

Does anyone know of how this has been successfully handled anywhere else? Or is the choice between a cruel barbarity where people's feelings get hurt regularly and a bland world where no one engages?

OK, one idea- Perhaps when a thread wanders into a taboo area the moderator could flag it as "closed" rather than "locked". Anyone wishing to enter a "closed" thread would have to PM the moderator and know that controversy lay ahead. Best I can do, but it surely isn't just us.

[kimmydawn]

The word "locked" does appear at the bottom of a thread that's been closed for further discussion, reverett. I was careful to use the word closed (because I prefer it) and that's what the software uses as well. Then when I "close" a thread, the software then says "locked"...interesting yes. Maybe DocJohn could go in and manually change that wording? I do prefer "closed" and it's referred to closed everywhere else in the software...interesting. I'll ask DocJohn if he can change that. I want to clarify that I didn't "flag" with the word locked.

I know that the individual forums are a place to discuss the *much* that surrounds our illnesses...our lives. It should be a place we can do that. It needs to be a place where we can do that within the guidelines for all viewing. I agree that it should be an almost anything goes within the guidelines and if members find a topic personally insulting or upsetting, they should move around it. If they find a particular member personally insulting or upsetting, they can use the ignore function. This not only benefits their experiences, but the experiences of all who are reading and participating.

I'm with you in that we should be able to discuss the various areas of our lives with our friends and those we know understand so well...our illnesses certainly just don't affect us physically. We just need to keep any convo we choose to have within the guidelines for all who count on them. It's meant the world to me to be able to discuss almost anything in my life with those who live similar in their lives. For instance, I might not talk about some of "my stuff" with just anyone because it frustrates me that they may want to give me advice...not having a clue how hard it might be to even consider what they're suggesting....I have a hard time dealing with doing sometimes and I like to share my problems with those who know where I'm coming from. For someone who doesn't know how hard it is for me sometimes to just, "you should just..." like I haven't considered it can really get to me. I don't go off on them, cause I know they mean well, but I do inside sometimes. ;) Yep, it's really important to share with those who truly *know* what I'm going through and for others to realize that interjections can frustrate and hurt even.

I think we'll have to accept that disagreement will be almost as common as the various discussions will be. It happens in almost every conversation, situation...either agreeing or disagreeing. Just as in real life, I think it's the way that we handle our disagreement, or display it specifically, that determines how the convo flows from there. Also, it depends on the others involved in the convo how they respond to our disagreement that is another determining factor in the flow of a convo. Just as everyone involved in the convo has is participating with thoughts, I think the responsibility is there to accept another's if it's not personally attacking, etc.

That said, being online makes it much more difficult than real life because we don't have the benefit of seeing facial expressions and reading the face and body. I've found that making my comments very clear and using lots of icons, shows me more. For instance, I have a very dry sense of humor and ppl in real life sometimes can't tell when I'm joking, so I go way out of my way to point it out online. When I'm disagreeing, I usually say a "thank you" when I start then go on to post my disagreement, trying to stick with "I statements" as opposed to you, you. It can make another feel singled out and defensive. I'm just sharing what I've found to help in my years online. If I've given you more than you asked for, I apologize.

Edited to add: Also, if I'm way off base in the discussion, excuse me please, I'm sleep deprived and pain is flaring right now.

KD

[Stitcher]

Does anyone know of how this has been successfully handled anywhere else? Or is the choice between a cruel barbarity where people's feelings get hurt regularly and a bland world where no one engages?
Interesting thread, Everett.

I frequent a couple of non-PD forums, for personal reasons. If you check out WebMD's Healthboards and read the Message Boards "Posting Policy (http://www.healthboards.com/boards/faq.php?faq=faq_hb#faq_hbfaq_postpolicy)". It is VERY hard to adhere to these policies, especially when you see or know of information that can directly answer someones question. But, at the same time, these policies do address just what you are saying...staying on topic and leaving out the wandering from room to room.

In "defense" of NeuroTalk Community forums, I find it nice that we can share out pitty parties and frustration (like I had recently with cs...sorry about that), provide empathetic and compassionate feedback, as well as constructive criticism.

I was recently suspended and then banned from the Healthboards due to breaking a policy rule. I "fought" this battle and was re-instated...with compliments...which was nice to hear.

[paula_w]

Carolyn,

I can't picture you getting suspended from anywhere...it makes me giggle, sorry.

I'm sorry if it was something I said to close the thread. The PD forum has come a really long way in handling these discussions IMO; if it was a complaint, I would be disappointed that all have to subscribe to what a few could just ignore, but otherwise - rules are rules I guess.

paula

[kimmydawn]

No, paula, you didn't contribute to the closing of the thread. The most of the thread was against the guideline stated in the closing statement.

I thought that the disagreeing posts there were done very well, actually. It was just that the convo itself was against a guideline that we're pretty strict about due to the direction they have often times take.

If anyone would like to discuss the guideline itself, then a PM to DocJohn would be good on that. Sometimes he will allow for a specific thread outside the guidelines...

KD

[kimmydawn]

This is a good conversation, but I'd like to remind everyone that if they want to discuss specifically my action, a PM should be sent to me or a complaint/concern sent to DocJohn. That's just a gentle reminder...

Thanks!

KD

[kimmydawn]

Please forgive me in making another post but I'm multi-tasking at the moment and am not completing my thoughts.

I'd also like to let anyone and everyone reading this that it's really OK to send me, or any member of this mod/admin team a PM stating, "I disagree!" It's OK to disagree. No one will be held in some sort of account for disagreeing...even strongly. Also, it's how we get to know each other...

It's a good thing to do, in fact, because I might not have all the facts and make a "bad call" because of it. Some members might not know some of the facts in the bigger picture and not understand an action...causing upset for them.

We limit public discussion for the whole, but that does not mean that one can't PM and say, "You don't understand," or "I disagree". I won't always agree and the guidelines are almost always the deciding factor, but it really can help to have that communication and I want to say that it's OK to do that.

KD

[reverett123]

:) or something similar. And KimmyDawn, that is one neat signature line!

[kimmydawn]

:)

Thanks for understanding and response.

Re: my siggie...thank you! It's the very first siggie I ever had when I entered the wild world of the internet forums almost three years ago. ;) A friend and fellow member surprised me with it. I'd never seen anything so cool and had no clue what I was supposed to do with it! LOL I'd never heard of photobucket or anything either! I was a sight. ;)

I'd been in other communities but strictly in the chat sense and working there, but that was about it for my online experience. ;)

KD

[gaykir]

I expect to be in trouble for this but I must comment. This thread is exactly why we prefer the fellowship of other Parkies in a local group and do not get too excited about these on-line sites. We can say exactly what we are thinking and everyone understands or is free to state another case but no one can stop the comments which are frequently based upon someone's feeling at any given moment.

Our hearts go out to those Parkie's who live in rural areas or areas not served by a local group. My heart breaks for those who, have no family or are unable to get out to meet with a local group. These folks have to rely on these on-line sites and run the risk of being censored by parties who have no clue where their heart is or what they really mean in these posts.
:D
We'll see if I get away with this.

[kimmydawn]

You got away with it. ;)

Guys, we don't aim to "censor". It's a community with guidelines...as most are. So, when it's looked at in that respect, the word censor does not apply.

Let's look at the real life group supports. I've never known of one (and in my experiences have heard of many) where the didn't have "conduct rules" and strict ones.

Of all the things we can talk about in this world, there are a few that are limited...limited further is how we treat others, because this is "cyber space" and it's proven that many would engage or react/act with less inhibitions than in real life.

So, with all said, there are guidelines and for reason...it being what it is...as most organized groups have rules, we have guidelines.

Thanks,

KD

[gaykir]

;) Kimmy Dawn...:D :D :D :grouphug:

[kimmydawn]

;) Kimmy Dawn...:D :D :D :grouphug:

Wow, hugs! I'm definitely a hugger. :D :grouphug: for all.

KD

[kimmydawn]

Oh, reverett...

One quick thing...

The confusion with the word "locked"...

It only appears for some and on certain skins. It's a VBulletin thing. I wish it were consistent, for us and for members. I just wanted to follow up on that.

KD

[Stitcher]

Well, support groups are great and I do agree that there are always rules in any environment. In my post above I included a link to the Posting Policy in those forums...forums I can't be without, hence the debate:thud:with the Admin Moderator about my banning. If you have not read them, please do so and then compare them to the Posting Guidlines here in NeuroTalk.

I lead a support group with 21 members in extremely rural NYS for a couple of years before moving to south central Pennsylvania...so I know about support group conduct rules. Several years ago, when my need for chat rooms was great, I was a nightly member of the Dumpster Gang and/or PLWP2, and it has not been that long since I stopped visiting the Edge chat room nightly. I can tell you that the more PWPs that came into the room the harder it was to chat...so many conversations at one time going on, and both verbal with microphones and those that had to type, the latter scenerio was very difficult for the typer's who didn't have microphones/headsets. Typed conversation got lost in the verbal conversations.

Honestly, I don't see the issue with NeuroTalk not allowing political discussion to occur within threads as a problem. Politics is a very controversial, subjective topic, one that for me is hard enough in real life among family members, let alone a group of people with odd "handles" most of whom have never even met each other face to face. If we don't have a hard enough time with misunderstood written words imagine trying to discuss politics without vocal inflection, etc.; e.g. my "issue" with cs recently :Sorry:again :hug:

I am not one to complain about my ailments...the list is too long, I won't bore you...:winky:...but I feel blessed that NeuroTalk is here for all of us and if I ever want to have a pitty party of my own, I know I can come in her and do just that.

Alas though, even chat rooms have rules of conduct.
Our hearts go out to those Parkie's who live in rural areas or areas not served by a local group. My heart breaks for those who, have no family or are unable to get out to meet with a local group. These folks have to rely on these on-line sites and run the risk of being censored by parties who have no clue where their heart is or what they really mean in these posts.
These comments are in no way intended to "ruffle anyones feathers," but only to state my personal feelings.

I also have to add that I don't have a family that even notices that I have had PD for 18 years...almost 19 years now. On the phone this past Sunday, my older sister actually asked me if I was still "had that shaking thing" since my surgery. Of course, the proper term is tremor, but since she is 100% clueless about PD, I wasn't going to correct her. Until my recent surgery and the adverse event that happened the day after, my oldest daughter in particular never even took notice of a neurology visits or a symptom (gait and tremor in particular) and I am in her home almost daily...she didn't even attend the surgery...my next door neighbor, my daughter's mother-in-law traveled with me and attended the waiting room that day...and this was major brain surgery. So, just wanted you to know that there are many of us "no family" PWPs and many rural PWPs who prefer places like NeuroTalk, along with advocacy work within the PD community.

Advocacy work...there is much to be done...volunteer somewhere online!! The PD advocacy world is not :Crowded: (Cool, I finally found a sentence to use the crowded smilie!!)

Time to put
1638
grumpie away
and
be HAPPY!
1639
Have a great weekend!
Volunteer Somewhere!!

I am :OuttaHere:
Hope I didn't ruffle too many feathers.
Anyone care to share how they feel??

[Thelma]

I agree with what is said mostly but it is in the anticipation of an arguement that befuddles my mind.

I have read many pages of entries and have seen some things said that promised trouble only to come back and find it has never happened.

I think that there should be a definite incident before any page is closed but I am sure that the warnings given as to possible trouble seem to invariably start it up.

We can talk. We have talked to each other or someone quite similiar many times in our lives and if we haven't agreed or agreed to disagree I don't thilnk we would have friends or aquaintances either.

While there are a variety here in the land of the web as well as in the land of face to face reality. We are the same people.

On this site we should be able to talk about the thinks that in day to day life we hold back on else why are we here. If it is to learn about Parkinson's we can read a book as well and learn from it. I bet it is for the human, I have been there, contact.

When you have a difficulty in what life has handed you then of course you want support and sympathy and indeed understanding. But this can be acheived only with the reality of the fragility of using the right words and meaning.

It is there we break down. We if given the chance could do more for the lives of those with physicall and mentally challenging conditions in using the english language to help them in their real world.

Some have made friends here and that is good but some use this and other sites to try and get help in communicating with their 'real' families.

As an example of what I am talking about is that someone has written a note of reply that is holding back on the irritation they feel and have been responded to in a chitty chatty way that has resulted in a downright insult which the other party has taken for a complement.

It is hard but we could do it and be the first to really have freedom of speech in a chat room.

Well I may have done it again but will just wait and see what the results are before I see my words erased.

[paula_w]

Carolyn, I am very glad you are here. You are helping so much and finally revealing who you are. It's great to have other advocates here. Remind me to start a thread about what we have learned about who we actually are.

Thank you for your kind comments.

Paula

[reverett123]

...have always been considered subjects to avoid in polite conversation. Yet, they are the most interesting. Humans are such strange creatures.:)

[kimmydawn]

This thread has really good feedback on it...good thoughts, and opinions.

Thelma, I dare say there's not going to be *one* community "out there" that has every single thing a person could want or need at any given time. There are great sites out there that not only welcome political/religious discussions, but are based on them. Similarly, they would not welcome certain other discussions due to their missions. It's the same here. Again, we can talk about almost anything under the sun excepting a select few topics. I think that's very cool. The guideline is in place for a reason, and put there by the site's owner who has not only training, but many, many years of experience operating online communities.

Making sure that several are arguing and upset is already in place before closing a thread is something you should bring up with DocJohn in PM because it's asking for a change in procedure in relation to the guidelines. Don't hesitate to do that.

Reverett, we are kinda "different", aren't we? ;) I've always said the the human is never completely satisfied. ;)

Carolyn, what a great statement regarding volunteering! There are so many opportunities. Actually, I came to do what I'm doing (volunteering to help others) due to my past life, being a survivor and knowing I survived for a reason...to help others, to tell my story and help as I can and possibly aid another who's trying to survive either mentally or physically. It's been my biggest work outside being a mother. It's been such a blessing for me. I'm glad you're here as well. You have a peace that radiates from your post...and understanding and relation that's so necessary for everyone at some point or another. Thank you for sharing, and for being who you are in your life because others surely are touched from it. Kudos!

[steffi 001]

Hi ! Yes....you are so right about we country bumpkins who haven`t a hope in hell of making a real live living tangible group meeting. Cows sheep and hogs are the nearest I can come to in the sympathy stakes and they simply chew their cud,roll in the mud or leg it when I `ve burnt their ears off or twittered on too much. :confused:

W ith a husband who works away,and a bus service too sparse to mention,by the time i`ve made it to the nearest town,its time to come home again.

So...this forum is my absolute life saver.That is why I pop up so much.:(
I so appreciate what everyone says about the difficulties of mailing like this.Heavens...after sending my very first e mail [which was an angry one] I thought better of it,and spent the next half hour looking for the "get your e mail back" button. First lesson learned .

I am guilty of throwing a wobbler when someone pushed the wrong button but hey...I said my "sorries" and the moderators did an amazing diplomatic job to ease the situation.

So...we live and learn how to deal with stuff..online,offline,cyber,real life.
It`s perhaps a good job I am involved in a cyber group...maybe there would have been a punch up before now.:eek: :eek: kidding.

And besides...my one and only pd real life meet made me so depressed.Everyone moaned. Quiick exit for me.
No truly...you get a good group and it must be fantastic...but too far away for me as yet i`m afraid.
Will stick with the cows and sheepies and piggies for now.

And here....of course
x

ps ...bet the real life group wouldn`t be too happy at being knocked up in the middle of the night...not like here...always someone around.

:hug:

[Stitcher]

ps ...bet the real life group wouldn`t be too happy at being knocked up in the middle of the night...not like here...always someone around.
steffi, middle of the night...check out the time stamp on this post EST in the USA...2:20 a.m.

A knock on the door at any hour is always welcome ;)

Paula, I am not sure what "finally revealing who you are" means. I think I am just fisty tonight. Learned long ago not to take anything in life for granted. Tomorrow may not come...things change in an instant...discovered that 12 years ago when that kid ran the stop sign. Of course, my most recent change was the seizure and how that single event has changed my life and provided me with a totally new perspective on a component of life that I believe I always took for granted.

Yesterday...yikes, at this hour yesterday is Thurs...I had to get to my daughter's by 7a.m. These days that is not a simple task for me since I can't drive my car. I have to call the county transit authority BEFORE noon the day before (I do all ride requests for the following week on Fridays BEFORE noon or I won't have a ride on Monday, if I need one that day) to reserve a ride. Since I am under age 60...heck for 15 more months...I had to qualify for the transportation as a "person with disability." Well, to go back to getting to my daughter's by 7 a.m...I have to call the transit authority between 5pm and 6pm the day prior to find out what my "pick up" time will be the next day. So, on Weds I called and the reply was "between 5:15 and 5:30 a.m...:confused:...what else could I say but "okay, thanks" Then I have to search my wallet to make sure I had $1.75 (the cost of a trip outside the the five mile radius of the Gettysburg "square," which is actually a circle. Well, I didn't have $1.75. I had $1.50, shy one quarter, but I did have two $5's. Believe me it is no laughing matter when you don't have the proper fare, which I didn't, so I had to give the driver one of my $5's, also not a laughing matter to me. I got to my daughters at 6:15 a.m., after we dropped off the dialysis patients. She came downstairs all bleery eyeed and asked, "Why are you here so early?" Already set up my four rides for next week...three days to my daughters and one to my psychologist.

Believe me, this not-driving "thing" is NOT fun at all. Had a test at the hospital this morning, had to wait for the driver to come back and pick me up...could be worse, I could have had to walk there, which I had to do this past Monday for another test at the hospital. (Stephi, glad you don't have to walk anywhere...sounds like you live far outside of a town :) )

Before anyone asks, once I reach the age of 60, then the Office of Aging picks up the cost of the fare and pays it for you. Heck, by then I had better be driving again. Hopefully, by Sept 11th, if not the 17th! Oh yes, and the fare to go to any place withing five miles of the "square" is $1.20. Unless it is a medical appointment, then there is no cost.

So, what did I take for granted:

Jumping into my car ANYTIME I want to go anywhere I want.
That being able to go to the store for something as simple as a gallon of milk was easy for the disabled and elderly who use the transit system. Well, it is not easy. We were 15 minutes late picking up an elderly person on Thursday, and that only gave her 15 minutes to grocery shop. She had only asked for a 30 minute period to shop.
Never take anything in your life for granted, it may be taken away from you without much notice!

Okay, now you have to endure my collection of quotes :Ponder: :Yawn:
Time is the coin of your life. It is the only coin you have, and only you can determine how it will be spent. Be careful lest you let other people spend it for you. ~~Carl Sandburg

Difficulties are meant to rouse, not discourage. The human spirit is to grow strong by conflict. ~~William Ellery Channing

This one is one of most favorite: When you come to a fork in the road, take it. ~~Yogi Berra PD is one of those "forks in the road."

I will leave everyone be for the rest of the night, going to bed!
I am done rambling AGAIN!

[vlhperry]

I have not been able to drive for years. It is the hardest thing I had to give up. We have a service here where I live called Darts. It is run totally by volunteers. You have to get on a waiting list to arrange a scheduled ride so I had to give up my health club because my husband has a busy life (like I used to have) and it limits my ability to socialize. Having to arrange a ride 4 days in advance may be a pain but I am thankful for the willingness of the elderly who generally spend their golden years shutteling me to my doctor appointments.

After a while, I have, out of despiration, learned to overcome my shyness of people and be more sensitive to watch for others with special needs and spend time talking to them. Yesterday my husband had a physical scheduled at our clinic. While we parked, I saw a gentleman about my age sitting in a wheel chair sitting outside with his aide parked about 20 feet on a bench reading a newspaper. The man's head kept bobbing around, as the aide had parked him facing the opposite way so he could not see him. I went into the clinic with my husband while he checked in, then told him I would be right back. I went back out side and introduced my self to the man and he told me alot about himself.

He had MS but had his own company that made transisters to alert farmers when the sows on their farms were about to give birth. We enjoyed talking for awhile. He was a very pleasant man named Doug and we talked until his ride arrived. When he asked about his aide I let him know where he was and that he was keeping a close eye on him. I said good bye and went back to the building feeling like I connected with someone, even though I probably will never hear from him again.

Love,
Vicky

It helps to look outside at others and not be introverted and constantly looking at how the world treats you. If you are not looking for opportunities to reach out to others, and are willing to risk the occasional rejection without assuming the person who has rejected you has had a bad day; not because you have bad breath, are fat, unattractive or whatever, you will add so much more happiness to your life.

[Jaye]

Rick,
You can count on me to be caringly blunt, and I do hope the caring shows.

I would suggest to anyone that on the internet they recognize that the range of opinion is probably far greater than they have ever encountered before.

On some sites, such as some political ones, there is a spirit of combat that resembles anything from bashing one another over the head to the most delicate fencing. The cleverest one wins. Here, and on any support site, I like to see the opposite attitude: if someone takes offense, they begin with "I must have misunderstood you," and the answer is, "so sorry, those are my views but I don't mean they have to be yours." And so forth. The abbreviation IMHO (In My Humble Opinion) goes a long way.

Blanket statements, especially those suggesting extreme measures, are sure to squash someone's toes. Presumably we are not here to upset one another, even in a spirit of "fun," so, even if an idea is sure to save the planet, I've observed that giving people some time to get used to it by tempering it with IMHO or IMNSHO (...Not So...) helps keep the insult level down.

Someone said "I-statements." Yes, definitely. If we would all re-read what we've written and change anything that purports to tell someone else how they feel or what they are, peace would come a lot sooner to the world.

It really helps to meet some of the other forum members in person, because it makes it a lot easier to relate to them as real people. Best not to say anything you wouldn't be able to say to the person in person.

Years ago, on some of this forum's forerunners, if someone had a big difference of opinion with me, I'd ask them to email me off-forum, for the sake of the community, and we'd work it out in one-on-one. I was too naive to stay guarded, so while I made great friends that way, I also received a "blackmail" threat when someone said they'd like to reveal what I said on the open forum. People do get very upset about ideas!

One time I hurt someone's feelings so badly that it took them years to forgive me, so I'm not saying any of this from a superior position. These are not rules, just things I've observed and found IMHO useful.

I hope this helps, at least to spur someone's thinking.

Jaye

[stevem53]

I agree with what you posted, especially about what you said about the differnce between meeting online and then meeting in person

I avoid to the best of my ability confrontations with people on the forum..Ive only gotten in a few scraps, and never came away feeling good about it..I have always come here for inspiration, friendship, advise, and to hopefully help someone else if I can..One of the other reasons why I dont like to argue, is because Im a sore looser..:D ..Enough said about that..I have a few political forums that I go to, to let the birds out, and as Jaye mentioned, they can be very combative places, and more times than not, a knock down drag out bashfest..The subject matter gets lost in the chase, and it becomes a sport to see who can insult who the best, without getting banned in the process..The differnce between the poliitical forums, and this forum..for me is..I have met some of the people here, and hope to meet more of you in time..On the politcal forums, there are very, very few people who I would look foward to meeting

[paula_w]

Moderators,

To be completely honest, I have to say that closing the thread strikes me as a pretty strong action. Or perhaps it should be called a reaction.

But you have all been kind, and helpful and I like you and your visits here. I'm not challenging you - I like it here .
Flashes of BT1 on that one tho.

I have come to look at it this way after giving it a day of thought. We weren't given the chance to learn how to talk about the hard stuff or try to do it in a reasonable way.

You do not have to explain anything again. It'll be forgotten real soon anyway.

This is just a comment; not a condemnation!
paula

[kimmydawn]

I agree with what y'all are saying.

It's not like not being able to do something in one place means it can't be done all...good point!

Can't do the political stuff in some, but can in others when a need is felt.

KD

[kimmydawn]

Thank you, paula :)

KD