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

Kimmy Dawn...

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

KD

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

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 debatewith 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 again

I am not one to complain about my ailments...the list is too long, I won't bore you......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.
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 (Cool, I finally found a sentence to use the crowded smilie!!)



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

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.

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

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

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!

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.

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. 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.