[Thelma]

I had the weirdest dream or thought process last night that kept me up for hours and haunts me today.

We have talked about John Lester and the concept of his having a responsibility to us in the manner he has left us all hanging without a word

We are now asking for forums that attracted no one back at the old site and only confused the picture of what really was. Are we saying that John Grohol has a responsibility to provide these for the asking?

The more irrelevant forums we have the more moderators we will need to
Have.

This site is what exactly. Is it a Neurological site or is it a Hodge podge of everything that in time will be nothing.

We need a name now and we need a definitive statement as to what we are going to be in the future.

But we also need responsibility.

Responsibility for each other and for the forum as a whole. The freedom we now have may not exist for all time.

My example is the members who leave here in the future and their responsibility to me as an individual.

They don't have any you say. Well I beg that we do owe a certain responsibility to each other.

e.g.

One woman who has been on the old forum for as long as I can remember and was a prolific member there had a husband who was at the very end stage of a disease and had kept the members up to date on each and every aspect of his life. They had tried all that was available and nothing had worked to the extent it was being published at achieving.

She fought for the right to put all and any treatment she thought was going to work on that forum and in the end they were all shown to be of little or no value.

Many people lost thousands of dollars on that site at Braintalk and nothing was ever done to curtail the use of the site to these charlatans.

Then came the moderator and he took off like gunfire banning the members for innocuous statements and little innuendos that were so insignificant as to be of no interest save to who they were directed at.

Was he being responsible to what John Lester had told him to do or was he showing his independence and taking the responsibility on himself.

It is a hard thing to know I admit.

But his responsibility is not my point at all. It is our responsibility to each other.

Don't take each other so serious in what is said to anyone here as it is this medium that leads to words being said that are not intended for all to read and interpret.

Now because I am such a poor internet communicator I have finally come to my final thought.

The person I was talking about above suddenly announced she was not feeling good with the forum at Braintalk as it was being run and left it.

She left the forum over the moderator and left her friends of years hanging there in the dark. It has been over a year now and still they wonder what has happened to her husband.

Is he okay? Has he died? Did she break down from the tension?

They and I still wonder about lit. And while they wonder about him they wonder about their own lives and what will happen when there time comes.

So there is the ultimate responsibility when you begin to type and interact here.

So John G may we have a forum where we can leave messages that will say we are going and why and perhaps even come back to once in awhile and say we are okay and hi to everyone.

Let’s call it CARING and REMEMBERING

Thank you Thelma

[Doody]

Thelma, if you give her name, one of us may know where she is so that you can find out. I know of one forum that quite a few went to when they tired of the bannings at braintalk.

And I like your idea.

[kimmydawn]

Thelma,

Thank you so much for making that post and giving some of us a clearer, closer picture to the caring, concern and wonder that can, and probably will, happen at times.

I think it's a great idea as well! We could possibly have a forum that combines "hellos", "goodbyes", "passing throughs" and "caring and concerns"? Maybe we could add the word "Journeys" to your great title? Just thinking out loud basically...

You could've just posted a request for this forum, but sharing that story has added to my sight here. It's appreciated.

Regarding the name of this community, I agree there as well...when it's comfortable for all.

Again, I appreciate (on a personal level) the time, considerations, and thoughts put into this post.

KD

[Thelma]

The treatments I am referring to were those that solicitated people to spend upwards of $25,000 dollars and travel out of the country in some cases to receive these treatments.

Two lost their entire savings to go to China for one example and yet not a word of caution cam e from the moderators or John there.

I don't mean the simple talking about medications and such. these treatments meant brain surgery.

As for the site I am asking for. No I don't want a I am going for a vacation such and such a time.

I want a serious forum where if you are leaving you say so and don't leave everyone in the lurch as to lhow you or your kin are doing. One where you can come back to inform everyone as to how things are going.

The forum if not regulated will just be another chit chat and while that is not a bad concept for a forum just not in this context.

I have the phone number of the person I am talking about and I have not used it because it would only take her a minute to do this and if she doesn't want to then the topic is dead.

I just want to help someone else who will take this route to ovllivion not to have to do it.

Perhaps it could be a post only through a moderator and no responses allowed to them.

I don't know maybe I am just wistfully thinking but I do know that the years and years I was on Braintalk wwere not wasted but did leave a lot to be desired in the way I would like a site to be.

Being vocal now is the answer to the future for this site.

Guess you will know when I think everything is Kosher when I shut up lol

[Ellie]

Now because I am such a poor internet communicator

I personally think you are a great communicator, and I really like that about you and how honest you are. I think it's an amazing quality that you have!

I do find this topic to be very interesting. While I don't like to think people will leave due to moderation or other reasons, I will still agree that it would be great to have a 'check in/check out' area.

I've also lost touch with many people and it always weighs in on the back of my mind, and sometime's I have to wonder if they know how many people they left wondering, or even in a worry about them.

I would, however, love to know if there is anything that any member finds questionable regarding a moderators behavior that I, or we could change for the better. I'd feel awful if I felt like I 'ran someone off', so I am personally always up for suggestions.

You have been very open with your suggestions, and I really do appreciate that. You have pointed out some things I didn't know much about (like your ALS post), and I was very pleased to feel better educated regarding that.

Perhaps it could be a post only through a moderator and no responses allowed to them.

We have had a discussion regarding 'Anon' type posts, as well. So I think this is a good suggestion. There are some things people do not wish to post on their account name due to it being a personal topic, or something of the like. So we have been looking into finding a way for Moderators to post things on behalf of users. If you have any suggestions, that would be great!

[mrsD]

Thelma: I always enjoy your posts. I read every one!

Ellie: I am curious about your suggestion, and perhaps embrace it.
Why? Well, unfortunately, whenever I post "personal" data, I get attacked for it off forum. I won't go into detail here, but others in your admin circle can clue you in.

Thanks for the PM Ellie.

[kimmydawn]

I think it would be great to offer that place to members...the place that they would say goodbye and why, etc. I'd also like it combined with the other as I'd mentioned.

That said, if the forum is put into place (I can't answer that or know that it will be), that's all we can do...offer the "place". It doesn't mean to say that all members, or even a few, can or will utilize it for those purposes. It would be great if all our community friends are able to say the hellos, goodbyes, be backs, etc. (at times people don't fully recognize the impact they might have on others), but it doesn't mean that they can or will.

I think having a place to come together, share, support and every other thing we have offered to us is a true gift. It also, as in real life, can have the downers...including, but not limited to, no longer having those we've come to care for available to us as they were. I think we all take that "leap" when communicating with others.

I think your suggestion to say "goodbye" is a great thing to offer for those willing and that are in the "place" for that kind of sharing with all of the other things they're dealing with. Some (moving on willingly) might not have that kind of energy in the moment, but it would be great to know that it's there to drop back in on at any time.

KD

[Thelma]

I

guess if Dr Grohol didn't want to make forums he wouldn't. I'm unsure of which forums you find irrelevant? Are you talking about off-topic forums or forums of conditions where people have requested a forum?

thanks.
Just trying to understand what you mean.

Hi Lara

I don't know what Dr Grohol wants to do. If he is just trying to please us or himself or both.

I find the forums whilch take a subject matter, in this case a particular disease, and develop 2 or 3 forums around it and invariably only one of them are used to a greater degree than the others. A lot of the forums at Braintalk were not ever used and even here there are some allready not being utilized.

That creates the illusion that we are disorganized and not sure yet of what exactly we are doing. That turned one gentleman off and he quit over it.

These are topic forums of course but the off topic ones are wanted by some people and to confine and define them seems to work well. But they are a concern as they do intend to get rowdy at times.

Mostly it is the people who really don't go there to participate but merely to read and report back. I forget what they are called but they do exist and can cause problems in that they don't interpret the messages there as humor and take it seriously.There is no way I know of to keep them away and so this type of forum takes a lot of time for a moderator and really requires understanding of the members there.

The forum I am trying to explain and not doing a good job of it is a forum that is totally controlled by the moderators and they and they alone put the messages in there.

Only the messages they are asked to put in and only the messages that say people are leaving and will return once in awhile to let all know how they are doing.

No long drawn out posts of why and who or what has happened because I have found out in the past that to miss even one posting can put an entirely different slant on any problem that has risen.

The forum will not be a place to rehash the past. To talk about those who you think have treated you badly or any other reason save that you are leaving and wish your friends to know and will return once in awhile to update through the moderators once again.

Thats it all there is to it.

Then no one on the forums will ever have to keep asking about anyone because if they do not put a post in there then they don't want any contact and if that is their wish we abide with it.

Freedom to be here and freedom to leave but with the additional freedom to keep in touch.

No where on any forum does this exist so that could be the rallying cry for this one.

A place for one and a place for all whether here or gone.



Wow is that dumb or not. Cant believe i just said that but I hope you get the picture.

Thanks for caring hon

[Tricia]

Originally Posted by mrsd

Thelma: I always enjoy your posts. I read every one!

Ellie: I am curious about your suggestion, and perhaps embrace it.
Why? Well, unfortunately, whenever I post "personal" data, I get attacked for it off forum. I won't go into detail here, but others in your admin circle can clue you in.

Thanks for the PM Ellie.

Is MrsD privy to the private conversations between forum moderaters? That sounds very unethical.

[Tricia]

Thelma what kind of treatment do you have to have? I hope it helps you get better. You sound like a nice person, even if your posts confuse me sometimes.