ALS For support and discussion of Amyotrophic lateral sclerosis (ALS), also referred to as "Lou Gehrig's Disease." In memory of BobbyB.


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Old 10-13-2006, 04:42 PM #1
Curious Curious is offline
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just hand bobby a beer...i bet he can bold it and change the colors too.

from my understanding, some of the emails addy's don't always work. like aol. but many who where banned have re-joined.

but i hope you still post here.
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Old 10-14-2006, 05:03 AM #2
Paul Wicks Paul Wicks is offline
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I notice the thread I started got locked for no apparent reason....

I think I'm done with OBT....
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Old 10-14-2006, 01:27 PM #3
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Hi Doctor Paul

So why are you saying that here and not at the old site. You have to understand the mechanics of David's warped mind and you will see why he closed the post.

The last comment there was a glowing one from a member of both sites that put him in a different light than I see him and he closed it to bring attention to it and have it read by all who are curious.

Got me to do it even. So it works for him.

Devious devious devious and some have fallen for it hook line and sinker.

They and not him alone are the ones who will keep the site down as they are also the ones who follow him and John around with the thank you thank you you are a saint etc etc etc to nausea.

Guess thiis is where I should put IMHO so no one will take the blame for what I write save me.

Is that devious as well? lol
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Old 10-15-2006, 11:53 AM #4
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I'm just a bit perplexed by this hero-worship of JL. Not that I'm jealous of course!!!!!

I have certainly had some nice things said to me and about me by people who use BUILD, but I also hope that if I really cocked something up they'd tell me so. OBT does not seem like an organistion mature enough to take criticism, and I find their banning trigger-finger way too twitchy....
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Old 10-15-2006, 12:02 PM #5
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Hi..I like the whole open discussion thing here..in regards to misunderstandings..on this thread alone we have had two..one where I completely misintrepreted JoelC's post..and one where Dave didn't know what happened to his...
It could have gotten all blown out of proportion ...but it didn't because the Mods explained how things worked..and that they did not remove it...
Sometimes we are going to make honest mistakes here..occassionally even the mods may as they are only human too..but the "chance" to discuss things to me is a very good thing...Lisa

Last edited by lisag; 10-15-2006 at 12:21 PM.
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Old 10-15-2006, 12:04 PM #6
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Shades of what I put on Feedback.

I guess I was taken in by the fact it was the only site for so long and let the hero worship go by.

You wouldn't want it Paul you have character and honesty and that is the true making of a man.

But I am not in love with you but I do love the way you care for other human beings.

Stand tall..............or nuts there goes the song that will haunt me all day


Sttttanddddd ttttallllllll da de da
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Old 10-15-2006, 04:11 PM #7
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Hi Paul..
Here are my two cents on the issue...( and they are probably worth just that 2 cents)
OBT was very unique when it first started ...I feel JL did alot of good things.. I also feel he is a compassionate person..and he will always have a large following..
However Braintalk also changed as it grew..once what were fairly liberal open discussions before...became at times very tightly moderated ones...while at the same time in other cases there were still some liberal discussions and some criticism allowed..
To me what made it special when it started... was the open discussion and the compassion of not only the members but the adminstrators and moderators..( although many of us remember the days when there was no moderators on BT at all --except JL)....and it is obviously to big for that now...
But, I feel OBT is losing the open discussion and compassion for the most part..I mean there were "literally" years when not a single person" with ALS" was ever banned.....back then threads were just simply locked and words of reminding folks that this community was about compassion were left if a thread started getting out of hand...rarely even that was done at the ALS forum..then boom half a dozen or so people were banned some for merely questioning publicy why another was...
Right now fear.of being banned is why alot of people handled things through back door e-mail gossip and posts on other forums such as this......which to me just leads to more problems for OBT...there are also people simply afraid of criticizing BT at all...for that matter posting their thoughts on just about anything...
Challenging decisions and public criticism though is just not tolerated at all now there ..that makes little sense to me as personally I'd prefer my laundry to be aired in the forum on which I post..instead of many others..but as the rules are being enforced right now its walking a tightrope to openly discuss "any" problems there...
Maybe...and I don't know..if many of problems that have arisen there..because the forum is so big now..as Braintalk is/was one of the largest forums on the internet of its kind it is hard to say....
I post at both forums. though I am more careful in choosing my words there and what I feel I can safely say....as I have friends that post at both places..and I don't like to leave newbies hanging out to dry there..though at one point I got sick of everything and said to heck with it all ..which was bad on one hand as there are many people I missed ...but which in a way was good because my time on the computer took away my time from my family and problems were created due to that which I did not realize..plus I was posting there too much anyway and I did not want the forum to become to centered around my husband and I...as there are better caregivers out there than I..and everyone with ALS is just as important. I have a tendency to be to vocal and opinionated ..if you haven't noticed...but hopefully though I can find a better balance...that and keep our new computer system running..I can sympathize with JL there...Lisa

Last edited by lisag; 10-16-2006 at 11:22 AM.
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Old 12-01-2006, 10:01 AM #8
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This is a trailer for a documentary on Avichai Kremer and his battle against ALS (Lou Gehrig's disease).
« Prev -
http://video.google.com/videoplay?do...patients&hl=en



Race Against Time
What would you do if you were told you only had three years left to live? ALS or Lou Gehrig's disease is a fatal illness that kills thousands of people each year and yet there is still no cure. This horrible disease can strike anyone, anywhere, anytime. Prize4Life was started by an ALS patient who wants to see a treatment in this lifetime. Prize4Life is the world's largest prize contest to accelerate ALS research. Go to www.prize4life.org to join the fight!
http://video.google.com/videoplay?do...patients&hl=en


A Midwinter Night's Dream
A Midwinter Night's Dream is an annual charity fundraiser held by The Northport High School chapter of the National Honor Society that supports Amyotrophic Lateral Sclerosis (ALS or Lou Gehrig's Disease) research.

Grand Total Raised [so far]: $264,000


http://video.google.com/videoplay?do...patients&hl=en
__________________

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ALS/MND Registry

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