Braintalk is back up
 

Not all there yet, and you have to re-register.

rose

Amen!
 

Re-registering means: YOU HAVE TO SIGN ON AS IF YOU HAD NEVER BEEN THERE BEFORE.....
JL explains it for several pages under 'Forum Feedback' It has all been reconstructed from SCRATCH, a Blank site with format...He is working on retrieving what he can of prior posts but, it will take time.. I signed on at about 10 AM, not gotten my e-mail reply yet, but, IMAGINE hundreds trying all at once! Patience is required...systems and people can only do so much at once... - j

okay,but are people going back?
 

I am beginning to trust this new site, as I feel there is access to the guy who put it up, and moderators who let themselves be known. Good that JL attended to business, but does this mean we switch back? I know some of you are on several support boards, but I've never been on more than one at a time.

What's everyone going to do?

Good point LizaJane,

I like the idea of the moderators introducing themselves and they are familar names. I lost everything on the old site--I had addresses or links stores in various places. But with the prime site gone they went too. Lesson learned --hard copy of all important information.

I don't know which way to go either. This new site is becoming comfortable.:)

Like a lot of people
 

I was not able to sign up at BT1 with my actual e-mail address. I had to use a free account, because the BT confirmation messages did not make it past my e-mail server. I don't even know what that free account was anymore.

Fixing this is certainly possible. However, it requires a site admin to, ahem, pay attention to the problem.

You probably see where I'm going with this.

Forum discussion about the "two" Braintalks going on here at this link:

http://forums.braintalk2.org/showthread.php?t=2387

It seems unlikely, from the posts I've read, that all of the stickies and info and links and very complicated posts will be recovered at OBT (JLester's site).

It seems terrible that all that detailed information and research was just ... lost. :(

Unfortunately, when a system crashes ... that's what happens.

I have two backup drives for my own little computer, and they alternate backing up each night. This cost me a couple of hundred dollars for two drives, and a program to automatically run backup.

But what would that amount to, in terms of time and money and system management, I wonder, for backing up a website of OBT's magnitude?

So ... in either place, members will be starting from scratch, yes?

You're gonna love this!!!
 

I tried to register and received no e-mail to activate.

So I re-registered using my name without the L after it and guess what? I never needed to activate it.

It just told me "go ahead and post". and I did.

So I guess we're up and running again.

Now we have two places.

see you at the old homestead!!!!

Melody

Not me
 

I tried the allotted no. of times and couldn't get logged in. Various usernames, passwords, etc. nothing worked. I'll try going back and registering again. I'm not sure about two of them. I'm feeling comfortable here after an unsure start. But we may be able to pick up a lot of the old folks on the old forum and possibly recover all we've lost. Sure hope so. And I'd like to have the old Sjogrens forum back, I had a lot of research on that one that, of course, I had not saved.
Billye

Apparently
 

there is no longer any need for e-mails in the registration process.

I did not like what I saw when I visited, I must confess.

First, all the old posts are gone. What the hell--were we really waiting months just for another blank site to reappear? Why bother?

Second, I visited the feedback forum. I was pleased to see a post or two by JL--but less pleased to see the tone of the forum. It was like a JL fan club, with Lester Boosters facilely accepting apologies and piling on anyone who wanted more.

And I don't see JL promising to do anything differently at all. No "board," no greater time commitment, no employees, nothing. So there's not a shred of a guarantee that exactly the same thing won't happen again.

At the moment, at least, I am unimpressed.

registered as LizaJane
 

I never received an email from John and when I went to register, I did it as LizaJane. So I'm there. I wrote a rather long and rambling post to JL, with my concerns. I saw one post there, from Mrs D, saying she was going to stay there. I'm not committed at all. I see no evidence that he's setting up more backup systems to protect us, or a more open environment. I'd want to see that there are more Johns than John, so if he is busy at work, there are people looking over things. I'd want moderators who are open.

I imagine this site will one day become proprietary and we will pay to be a member. That would be worth it, if we are paying for attention.

Anyway, here's what I said to JL:

http://brain.hastypastry.net/forums/...?p=903#post903

yes, I would like to stay there...
 

and for the time being I will visit each day...but if the data is not retrieved...well..then I reconsider.

I had almost 10 good years there, but in the past there were promises, that were broken... about lost data.
Turned off that old server with no warning so we could not save stuff etc.

What ever happened to back-ups? That is what they are for. We were told
in the past that back-ups are done regularly. (my son says Macs have auto
back up easily done)... so why isn't our data on a back up drive?

If the old posts do not return...well, I might reconsider.:rolleyes:

I've said before...will one last time!
 

Many other BB's have 'crashed', lots/most info lost. At least one board was down for 6 months and all lost. It's a crap shoot..if One board or another works...they can both work as it's the same basic program. It's how the Board responds to our needs and grows to meet them in ever so many ways. Lets look and see if THIS board -meaning the board members and administrators...actually read and took to heart the input of many long-deprived and frustrated members. [BI[/B] for one, would like to see an 'institutionaliztion; of this board to ensure it's primary issue of access for folks w/neuro problems. Many of them overlap...few other boards are so universal in approaches..
The jury is out on my part...to me, it is up to this non-profit to grow change and respond to it's constituency in a way to either instituitonalize itself OR not. How it takes criticism elsewhere and uses US the USERS to grow and mature or not...well, it's UP to THEM not US!

I view it as a WISYWIG [what you see is what you get] Situation for the interim.. where I go and post is, so far, free choice. BUTIf I were asked to aid in any way, I WOULD!!! without reservation! - j

Okay, I read through this link, concerns well expressed.

What on earth is Brigadoon? Or Second Life? Do I even need to know?

I too gave contribution(s) directly to John Lester (via paypal I think?) to upgrade servers, etc., after the flood, and I thought I was contributing to the upkeep of BrainTalk.

Obviously I'm out of the loop on this, and with the forum archives gone I don't know how to catch up. :(

There is nothing stopping you from using both...its not a boxed in either or situation.....Ill look at both when I have time, maybe post a reply or two.....but I really dont like the tone there that much, it reminds me of Catholic School in the 60's. Many of us , myself included , have felt desperate at times about their medical problems or maybe application for workers comp or social security or ability to work. In my opinion we know we have problems and we already know we need to talk to people in the same boat, there is no need for the constant reminders of who has unilateral, unlimited power over the site.

I, basically, decided that the whole situation--
 

--needs to be bathed in sunlight as much as possible, and I invited JL to do so:

http://brain.hastypastry.net/forums/...read.php?t=218

--as I feel the responses, if any, will greatly determine the fate of both Braintalk and this board.

(I did notice that there have been many views, but no responses as of yet.)

I'll tell you exactly what Second Life is.
 

The only reason I happen to know what Second Life is, is because my son happens to be addicted to it. Plays it night and day and even makes virtual money and sells it on other websites for real money.

Second Life is a virtual world with graphics that go through the roof.
You can join for free, create your own avatar, buy and sell real estate and even have naughty romps in this world.

You can visit casinos in Second Life. You can fly in Second Life. The graphics are absolutely out of this world and the members take it very seriously. This is no nintendo game, believe me.

so just go to www.secondlife.com and you'll see for yourself.

It's not for me though, I'd rather sit outside with friends and chat.
I go on the computer but I don't live on the computer like my son and others do. This is a real addicting way of life, believe me.

mel

p.s.

Now here is where this gets very interesting. I went to google and typed in Brigadoon. One of the links sent me to here and I copied and pasted this:
=------------------------------------------------------------------------------------------------------

All of the Authors on this blog are participants in Project Brigadoon. This Blog is a place where they can publically share their thoughts, experiences and feelings. About Brigadoon, Second Life, Asperger's Syndrome/Autism, or anything else. This Blog is also a place where the general public can interact with participants in Brigadoon by posting comments.

-John Lester
President, BrainTalk Communities, Inc.
Founder, Project Brigadoon
Second Life name: John Protoype

---------------------------------------------------------------------------------------------------------

GUESS WHAT MY SON FRANK WAS DIAGNOSED WITH AT AGE 21????? ASPERGERS DISORDER.

He plays Second Life, 20 hours a day. When he's not gambling, that is.
Wow, I went from not ever hearing about such a thing as Aspergers Disorder, to finding out that the guy who ran Braintalks is now on Second Life.

What an interesting mixed-up world we live in!!!!
mel

Thanks, Mel, I too googled "Brigadoon" but I didn't get the hit for the Brigadoon project. I found the website after reading your post, and googling for "Brigadoon Project." Interesting.

Second Life -- not for me. I have enough trouble managing my first life!

And a nephew introduced me to the Sims, even buying me a program as a gift -- I failed miserably. No interest, gave it away.

I remember when your son was diagnosed and how it explained some things for you and Alan.

Thanks for helping me find this information.;)

You all will find this most interesting!!!
 

I just went to the Brigadoon website and copied and pasted the following!!!
Those of you who have donated to Braintalks will REALLY find this most interesting!!!
-------------------------------------------------------------
Donating to support Brigadoon
Project Brigadoon is financially supported by Braintalk Communities Inc. However, we would like to give people who wish to directly contribute to Project Brigadoon the ability to make donations online.

Therefore, we've just added a donation button to the Brigadoon blog (in the left column on this page). This will give people interested in contributing to Brigadoon the ability to donate online using Paypal or a credit card.

I am using BrainTalk Communities Inc. as the organization to receive and process the funds. Since BrainTalk Communities is a non-profit organization, all donations are fully tax deductible, and all donations made through the "donate" button on this Brigadoon blog will be used *exclusively* for Project Brigadoon.

All donations to Project Brigadoon will be used to help pay monthly land rental fees, as well as to potentially purchase more land as the members of Brigadoon grow.

Thank you for your generosity and support. By donating to Project Brigadoon, you will be helping a group of people dealing with Asperger's Syndrome and Autism to become more independent and confident in themselves. Thank you.


-John Lester (Second Life name: John Prototype)

-----------------------------------------------------------------------


well, well well.

comments anyone??????

mel

If no timely updates were forthcoming while braintalk was out for three months, I wouldnt hold my breath about it becoming more open to scrutiny, or suggestions or changes. I think they will let the grumbling go on a short while and then the bannings will begin.

OK IF I've got this right....
 

The other projects of JL are what non-profits call 'umbrella-ed' under BT. That means that while they are under that 'umbrella' of one non-profit, they must maintain separate accounts & bookkeeping while or until their own non-profit status is established...usually a period of 3 full accounting/tax years.

After that, individual non-profit status can be established or not...meaning the smaller organizations can continue to use the 'umbrella'..I don't think there is any time restriction. BUT, THE BOOKS HAVE TO BE CLEARLY SEPARATE, and usually- fees are paid for the admin support. Does this help? - j

I can't answer any questions about John Lester, or Brigadoon, or second life, etc.... Those are questions that only JL can answer.

But I can help you with some of the questions that you have asked about this community.

I would like to invite all of you to read a thread posted by DocJohn (he's the guy that runs Braintalk2). He recently posted a thread in the ommunity and Forum Feedback forum to explain how this site is run (finances, servers, etc...).


Here is the link-
http://forums.braintalk2.org/showthread.php?t=2615


If you have any other questions about this community, please don't hesitate to ask.

Liz

PS - I'm not trying to stop your discussion at all, please feel free to continue to discuss this subject. I just wanted to pop in to answer some of the questions that have been asked about this community.

Little Mischief: Brigadoon is a community John built for people with asperger's syndrome. He built it at a site called Second Life, which is a very complex and interesting computer "world" where people can adapt identities and actually build a community, create products, have meetings, and do whatever they want. It's a virtual community, and it's been taking off recently. John was hired after he put an island in Second Life called Brigadoon as a place for asperger's folk. He had developed a reputation for building online communities, and Second Life has no got a good deal of investor money, and has hired more staff. John has had a blog where he speaks about Brigadoon.

http://braintalk.blogs.com/brigadoon...sts/index.html

He speaks about Braintalk on that blog as being part of an overall community for neurological patients, and at one point talks about using braintalk money to build brigadoon. Having donated to braintalk when the servers crashed last, I was a bit peeved to think my donations were going to what is to me an entirely different endeavour.
Not that it isn't worthwhile; it clearly is.

It's been my belief, with nothing to really back me up, that John let our community die while working on brigadoon, partly in the hopes of seeing if we'd migrate over there. Afterall, one of the reasons he was hired was his expertise at building communities, and I wouldn't be surprised if the board of directors expected that he'd be bringing clients with him. But that's all speculation.


I'd like to see JL's books for his nonprofits.

Also, I wouldn't be surprised if JL's interest in asperger's wasn't a tad on the self-interest side, which is not an insult, but might explain what is clearly, to me at least, a lack of empathy for us.

We are not virtual folk moving about a virtual world. So I'm not thrilled about BT1 coming back. I'd have preferred to just see BT2 develope and grow and hopefully become a trustworthy place.

As I read the postings on the newly resurrected OBT, it seems that John Lester (JL) has his adamant supporters, some detractors and some folks on the fence.

IMHO I think it will be very difficult to bring all those folks back into the same community based on how they are interacting at present. Lines are being drawn in the sand.

DocJohn's BT2 seems like a good option for those folks who won't feel comfortable going back, or who simply want to start afresh -- particularly if the archives are not resurrected at OBT.

From personal experience, I know that it is not unusual for people who run/own/moderate forums to burn out.

And people do simply walk away from forums that they own/moderate -- but usually they make an effort to explain this to the participants and hand the management/moderation over to someone else so that the community goes on without a major interruption.

Perhaps, after many years of OBT, the Brigadoon/SecondLife format is just more exciting for JL -- and OBT has run its course for him?

If that's the case -- and I'm only thinking aloud on this -- perhaps he should be upfront about it.

It would make everyone's decision so much easier.

Best, Dottye

You've managed to be far more succint--
 

--than I could be about these very important issues. I envy that. :)

Good post, Dottye.

I also suspect that Liza Jane's speculations are accurate--I had hinted at some of these points in my thread on BT1, but she has expanded on them quite well.

I suppose, other than the very real question of getting the archives back--said archives of data being the REAL value of Braintalk beyond the community connections--the major concern is some sort of explanation/assurance that such outages/losses will not keep happening.

I agree that the available evidence indicates that JL does not seem much interested in Braintalk anymore. I did make the point, though, that Braintalk and its posters are originally what made JL famous in the on-line world, and enabled him to found Brigadoon, and probably got him his demanding but lucrative job . . .in the end, partly due to this, he owes the debt of respect and honesty to the Braintalk community, and should answer any reasonable questions about the past conduct and future nature of the site.

To get ethnic for a moment, I (we) are asking JL to be a mensch (a stand-up guy).
Or to put it another way (in the words of a website I would love to one day create), to "admit to his s--t".

But, glenn, I can afford to be succinct and a little dispassionate.

Because while I gained much from the community, and care deeply for the folks on the PN and celiac forums, I did not personally -- as many of you did -- expend my life's blood in doing the research and finding the links and compiling the voluminous amount of research material that made the board so unique.

I reaped the benefits of that work, and the benefit of the kind and helpful personal contacts.

Had I been in the shoes of those of you who did the work (as I did on a non-competing thyroid board) ... I suspect I would be hopping up and down with my hair on fire. ;)

Everything's relative.

Best, Dottye

With two major crashes in a few years and the recent crash with no explanation of what was happening for long periods of time, and with the more egalitarian atmosphere here, to me its a no brainer of where I think effort and energy should be expended.

Aspergers Equals No Empathy!!!
 

Boy did somebody hit the nail on the head with that one!!!

I've lived for the past five years learning all I could about people with Aspergers or AS as they call it. People with AS are called aspies.

They can be quite brilliant and THEY ARE ALL, ABSOLUTELY EVERY ONE OF THEM, COMPUTER GENIUSES.

They prefer their solitude to socializing. A doctor in Vienna. Hans Asperger, well the syndrome was named after him.

Europe is absolutely busting out with cases of Aspergers.

They now say that 1 in 166 kids have an autism spectrum disorder.

I know where all the adults are!!!! They are playing Second Life.

oh well, it is what it is. Not fair but it is what it is.

I wonder how many of you on these boards have actually ever heard of Aspergers Disorder.

I know that before my son was diagnosed with it, I had absolutely never heard of it. I went to my first support group meeting in NYC over 4 years ago.

Alan and I sat down in a group of over 50 men and 2 women. AS occurs in men much more than woman.

I will never forget seeing all these bright intelligent men who all had nervous breakdowns after they went to college. Some were physics majors, math specialists. All were on meds and all had anxieties and some had Tourettes.

Some were squatting on the chairs, stimming (severe autistics flap their hands), milder ones stim. It's like your fingers have a mind of their own.

Most interesting that meeting.

Just wanted to share.

Melody

and...
 

I am still upset/concerned about the money issue. This is what John says on his blog:

""Project Brigadoon is financially supported by Braintalk Communities Inc. However, we would like to give people who wish to directly contribute to Project Brigadoon the ability to make donations online......
I am using BrainTalk Communities Inc. as the organization to receive and process the funds. Since BrainTalk Communities is a non-profit organization, all donations are fully tax deductible, and all donations made through the "donate" button on this Brigadoon blog will be used *exclusively* for Project Brigadoon.

All donations to Project Brigadoon will be used to help pay monthly land rental fees, as well as to potentially purchase more land as the members of Brigadoon grow....

-John Lester (Second Life name: John Prototype)BTW. Money was needed for this because Second Life is really a world, and to own an island on Second Life means buying the land there, and paying real money to do so. So, I am concerned that money we donated to buy new servers actually bought "land" in a cyberspace world. Not exactly what I'd intended when I gave him $1000.

And non-profits have real responsibilities. I'd like to know why he won't address making the cash flow statement public.

He's probably still buying islands!!!!!
 

He's going to be the Bill Gates of Second Life!!!!

mel

From a mom's point of view
 

Lara:

I read your post with much interest. I have followed Tony Atwood's writings for many years!!!

He wrote and made many points about Aspergers.

Now let me hit you with a mom's point of view about Aspergers. And this will be my final word on Aspergers because I went through a private hell and now me and my hubby have had to re-route our thinking process in regard to our son.


ASPERGERS

Severe meltdowns, severe tantrums, as early on as age 2 and they never stop. Severe rages. Very rarely following rules and regulations because they do not apply. Being incorrectly diagnosed with ADD or ADHD, and oppositional defiance disorder.

Telephone calls home every single day from teachers, principals, and social workers because your child is disruptive at school or at an after school program.

Being suspended from kindergarten because from the first day of school on, when the teacher says "gather round children, it's story time, and your child says to the teacher "get real, I want to play with the blocks".

Being suspended from absolutely every after school program, every single day camp. etc. etc. even Karate classes.

Bullied at school because the aspie never fits in anywhere.

Brilliant in school, getting 100 or more on every single test that they take.

Will not obey a teacher, will not do what they are told, etc. etc.

Arrogant to the point of annoyance!!!

And an inability to have any empathy whatsoever about what this does to a parent.

Lara, I lived this. And I correspond with many many moms of kids with AS who have gone through and are now going through the same behavior that I dealt with.

It is an autism spectrum disorder. Very hard to diagnose and even harder to treat. There is a therapy called Applied Behavioral Analysis but the person has to want to change.

Many aspies do not consider themselves to have anything wrong so why try and change them.

It's kind of like a belief system. You either think the way they do or you don't have a relationship with them.

I can't tell you how many moms I speak to who have children who are now in jail because they, and I quote "the rules do not apply to me"!!!! And all of these young adults have been diagnosed with Aspergers Disorder.

I get e-mails every single day because I belong to an aspergers support group!!!

In my case, I found absolutely nothing positive about having a son with Aspergers. The moms I correspond with, well let's just say, we are of a mind set.

It's a real challenge to continue to have a relationship with a young adult who couldn't care less about his parents' feelings.


Sorry to include this off-topic on a neuropathy board but because of the link with JL to Second Life, and your most interesting post, I just had to give a mom's perspective!!!! And I have no idea if you have Aspergers, or a relative has aspergers.

And I mean no disrespect. I just wanted to give a point of view from the parent's perspective.

life can suck sometimes, believe me.

melody

P.S. I promise, only neuropathy and funny stories from me from now on.

DocJohn
 

has posted in forum issues, I think in response to my guess that at some point this would be a paying site, and he wrote a wonderful note. He reassures us that this site will remain free, but he goes on to explain why it's free, why it's easy to keep up.

It was terrific to read. Nice to be treated like a grownup, like a citizen.

And makes me wonder more about all that money we sent two years ago.

And really, we shouldn't talk about Asperger's anymore. Everybody has feelings, and we have no idea who has what relationships. I do, in fact, have aspies in my life who are gentle, lovely souls. I apologize for opening the subject.

You know I did not know this site was here and everyone was using this while Brain Talk was down. I did not know that JL had requesting $$ to get the site back up and running!! How did that all happen and I did not know it? I had been at the healthboard site reading.

Laurie

Why change horses inthe middle of the stream
 

Good evening,
I hope you folks hang around here due to the fact that I recommended this site to some folks in the medicial field and to a nursing school. We are lucky this site was established for our use and there are many who have been posting valuable information. If there is some kind of turf war going on I give a hoot less as this site gives aid to those in pain, so all I can suggest if something is working don't try to fix it and thanks again to all of you who have tried to help me.
Lanny

i LIKE IT HERE,
Why go back for more punishment, once bitten twice shy i say.
As you all know a lot of people that are very ill depended on BT, 3 months of nothing is unbelievable considering what had to be done to get it up and running again, i personly think that JL didn't give a dam about the BT members.

The system crashed i believe, big deal , it does not take months to fix a pc crash it takes only hours, so somebodies preferances were definaly not at all concerned about the members of BT.
He says he started from scratch again and rebuilt the system, bull , because he controdicts himself when he says he done a low level format which is done with a floppy disc downloaded from the hardrive[s] manufactures website and is done to the origanal hardrive to tests for any problems and if that has really been done there will be no data on the hardrive except the MBR files that have to remain for the hardrive to work, to me it sounds more like there was a virus or trojan or whatever, etc had entered the system, he ran some antivirus programs that didn't fix it, so he wiped the origanal hardrive clean then just reinstalled the programs again.

There has been no backup in place for this result, not even cd back even once a week which is so easy to do, to make sure that the most current data was secure as well, i really do feel for those people who put zillions of hours of their knowledge into BT, and to be treated like this is really rotten thing to do.

I personaly think a split comunity will not work in the long run, the internet is a big place fair enough, thats true, but jumping from one site to another is not going to work as good as everone being in the one place were all of the combined knowledge is centralized has to give the best results for everyone concerned.
I hope everyone stays here and its not to hard to let others know at BT about this site without putting up in the main board, which will be deleted for sure.

sorry, accidently dual posted

Hi Brian
 

All I can say is that your post was way over my head. Are you in IT per chance?? Hmmmmm??;)

I guess the core message in your post is the unreasonably long downtime ,with obviously no effort to communicate with us, or the barest of minimum effort. And to this I have to fully agree with you.

I always wondered why they couldn't of just started a temporary forum for us, while all this "FIXING" & "REBUILDING" was taking place?

When you really think about it, it does sound like the biggest load of %#@#. Maybe he thinks because we have chronic medical conditions that we would just accept anything nonsense dished out regardless of the upsurdity?

Not all computers have floppy drives anymore...they are special order. And servers are the same way, esp rackmount's. I don't know JL's particular setup but I've built computers and servers (tower's). Only upon request or for our own computers, did we bother adding one and we only have two floppy drives in the house for 5 computers. If it REALLY needs it, we will open it up and add it.

And having your motherboard or something else "meltdown" can also cause your server to go bellyup.

In the meantime, let BT go it's way. Stressing over it is not productive. Raised stress can cause your PN to flair. Liz

Hi Aussie, nope just self taught, because i got ripped off once from a so called PC expert, so now i have no need to have anything to do with any of them, as i said with this situation too, once bitten twice shy, is the golden rule :)
I fully agree with everything you said too.
take care, i hope your sleeping problem is still going well, mine is :)
Brian

Using floppies or cd's doesn't really matter does it ? same result , anyone can do it either way, a motherboard can be tested in 5 minutes easily, so can every other part of a computor system.
I don't have to worry about PN pain caused by stress these days, i have NO PAIN, i have been lucky enough to have reversed my PN and i am certainly not stressed out by any means, but i don't like the idea of anyone treating good people badly, thats is my reason for what i posted.
have a nice day/night what ever it is in your part of the world.

Not by everyone...have to have the proper tools to do an accurate diagnosis...Testing a server is different from testing an upright/desktop.

Also, if I read things correctly, BT is colo'ed and he may not have had immediate access. I have a friend who has a colo and it takes him a day to get to where it is...plus testing can take several days and he is a pro. Liz