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 01-05-2008, 02:11 PM #1
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Default Do you have an opinion

Does anyone have an opinion on why all of the Als forums are seemingly so empty now. Braintalk I know about but Neurotalk appears to have learned a lesson and still is empty.

What will it take to make one survive.
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Old 01-05-2008, 03:50 PM #2
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I don't know but we're certainly open to suggestions!
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Curious (01-07-2008)
Old 01-05-2008, 04:13 PM #3
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Well Doc

You are for sure but maybe just maybe you are the only one.
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Old 01-05-2008, 04:27 PM #4
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Thelma, my mother always told me that if I wasn't part of the solution, I was part of the problem.
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Old 01-05-2008, 05:54 PM #5
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That is so true Alfie. But sometimes the solution is not in your hands and you have no control over it. That can make it difficult. But you know when I put this in I thought it would go so fast my head would spin but the fact that Doc John replied shows me there is hope here and the sollution only needs to be talked about and when found viable put into place.

I also put it in another forum [not bt] where they are down to about maybe 10 people posting and with the advent of a new person at the helm was taken out real fast.

So lets talk about it as it really is needed.

What say Pals and Cals ......................................give your opinion and if you don't want to share it here email me thelmas@shaw.ca
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Old 01-06-2008, 11:48 AM #6
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Hi Thelma ,
I don't think that all the Als forums are empty.
I think that the internet has just changed considerably over the last 8 years and there are so many ALS sites now, Years ago there were much fewer ALS boards.
After Braintalks crash.People scattered about to many different forums, and all forums offer a different kind of support as they are all unique.
This forum has alot of traffic for people popping in to read the new articles that are posted.But not many ALS questions are asked, so there is not alot of people responding to post. But, people do read here frequently.
In other forums there is more of a focus on science and research or day to day coping with the disease.So more questions are asked and responded to.
In yet other forums there is more formalized tracking of graphs and data with people trying experimental medications .
All types of forims though are quite valuable though, some people particate in several even to just read.
Lisa

Last edited by lisag; 01-06-2008 at 12:07 PM.
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Old 01-06-2008, 11:58 AM #7
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i thought about your post a lot thelma. we have been posting. and clicking and clicking to raise money. do some back reading.

but when i see a wonderful post like this from bobby:
http://neurotalk.psychcentral.com/thread33357.html

well..it makes me very happy that he wasn't posting. i pray that others with als are spending time with their loved ones and and doing what bobby did....living life.

so maybe this forum doesn't have scores of posts from different people with als. that could change. maybe the caregivers and family will post more. or just us that care will post. but i know for one thing...i value bobby's posts and i know the scores that view them do too.
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Old 01-06-2008, 12:18 PM #8
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Hi Curious,
I looked down at the bottom of the screen and right now there are 18 people viewing this site to read it, although they are not logged in.
So people are definitely coming here and are reading this forum .
When I pop in to read here. I don't always log in either, unless there is a question or problem posted I think I may can help with. Lisa

PS. Bobby way to go , it looks like you had an awesome time hang- gliding and fishing.
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Old 01-06-2008, 01:27 PM #9
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Cool

thelma do u want me to stop ?

after bt went down pals scattered then neurotalk started and there was alot of talk n fussing going on [not with me] tho i just kept posting along and every now n then you pop up and have a say which is great thanks. but nothing becomes out of what you say so i just keep on posting.

so what do you want ?

are you waveing hi or bye in you picture ?
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Old 01-06-2008, 01:32 PM #10
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DO NOT STOP POSTING BOBBY!!!

i mean that. don't make me let out my flying monkeys after you.
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