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 09-27-2007, 08:20 AM #1
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Cool please post something peoples

please post something peoples
i feel bad being so postie.lol.
some one has to have somethin to say ?

tell us about your als/mnd.
this is a forum for als.

i post pals news stories to keep the forum going hoping someone will join in.

if you want me to stop please tell me.
robertb@mitchell.main.nc.us

awareness is what im doing.
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Old 09-27-2007, 01:57 PM #2
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Bobby

It is not just a matter of you doing it or stopping it it goes much further than that.

It is, and I imagine you will admit it as well, so hard to type for so many to put much in here.

I have asked for you to have a forum of your own for all that you enter and a forum for the other members that can't keep up. It is very discouraging to put all that effort into a post or a reply and see it slowly fade to the next page.

You need a forum of your own here.

When I say that I usually get a response of machines that type for you as there is so many that don't understand Als and the ramifications of the physical events that put such a strain on everyone.

I read all that you put in here and would not like you to stop but it is a lot of reading and while the quality is good the quantity can be overload.

This forum is unique and should be treated as such.

There are so many members that can post but it takes time for the other members to read and respond and we need space for that to happen. Many times that post is so far down by the very worthwhile postings you enter here that no one sees it to respond to.

While a poll seems to be democratic it can not take all of the needs into consideration and you will either be in the same boat after the poll or out of here and neither is good.

You deserve better for the work you do. So skip this poll and lets see if there is some way we can get to John and talk him into helping this very unique site.

As you know the same thing is happening all over the various Als sites. There are a handfull of people trying to maintain their sites or no participation at all.

I have tried to make my point with John here but just haven't done it right so do you want to try because we need both, a place for you and a place for each and every member to post. But no polls I just lost one and now we have a need for the site and it is not there in the Parkinson forum.

Let me know and I will do all that I can to be of help to you. I was extremely hurt by a member and went off on a ridiculous rant with the management so my name is not very well received but you may do better.

Lots of luck and keep well as we need you here. Bit selfish eh but true.
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Old 09-27-2007, 02:39 PM #3
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thelma, ok i will keep all my post in the
ALS News & Research

and see what happens.
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Old 09-27-2007, 03:16 PM #4
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hiya Bobby

honestly, I dont think you need to keep *all* your posts in the subforum ....just the ones related to news or research articles....that is why Doc created it for you...not to *restrict* you to it LOL but rather to have that as the place for the articles so that *this* forum could open up for discussion.

I think it may just be a bit intimidating for someone coming in here to chat and only seeing articles and no talking going on.

I think once a few conversations start up in the main ALS forum, others may join in........

you do a really good service to all by posting your articles Bobby.

Cheri
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Old 09-27-2007, 06:28 PM #5
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bobby,

i think the articles and news stories are great. i'm one of your faithful readers. for me, i'm not sure about "conversation" stemming from them.

personal posts, questions, advice, support i can see replying to. kinda like the news articles docjohn posts. they give information, but rarely get any discussion going.

what would you like to see happen here?
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Old 09-27-2007, 09:10 PM #6
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Bobby,

I too am one of your fans and readers. I so apperciate the work you do and your contribution.

And I love the pics. You give me inspiration everyday and I am just glad to have you here.

Not sure if it applies to your question but wanted to say it anyway
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Old 09-28-2007, 08:14 AM #7
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I also always read your posts bobby and appreciate you sharing them.
I seldom "talk" here because I don't have ALS, don't know anyone personally who has it...but I am so often inspired by the courage of ALS patients...

Please keep this "high profile" going. And thank you.
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Old 09-28-2007, 08:19 AM #8
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Hi Bobby
Although I don't have ALS, but myasthenia gravis, I'm one of your readers too. I understand that you would like to see posts from others with ALS. Where I live I didn't find a forum so rich and supportive as Neurotalk, and it's my choice to learn all the days how to write this or that in English (my native language is Portuguese, very hard to find someone from US, England, Australia etc that speaks Portuguese) and it's my choice to participate in a forum where so few posts on it (myastheia gravis). But the posts there helps me a lot and I think I help them too. One of he reasons I like to read your posts is that I fell you are a real person struggling in a real struggle. You are the kind of person I admire so much. I'm glad you are there!
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Old 09-28-2007, 08:38 AM #9
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i thought about this a lot last night.

i think what is missing here are personal type of posts. ones where we can get to know you. where a good dialog can get going. no matter what the topic.

i can remember posting and pm'ing with rob. topics were about anything under the sun. i miss him.

maybe what i'm saying (and i should know better than to reply before my 1 cup of coffee ) is that i would like to get to know you bobby and the other members here.

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Old 09-28-2007, 12:42 PM #10
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Bobby
I will email you this evening and see if we can figure this out.
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