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 10-08-2006, 01:30 PM #11
fotios fotios is offline
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Lisa
Geia hara
If we can't change the rules why we try to find solution for ALS?
Rules say ALS is not cure for more than 137 years now.
Rules wanted me to be slave but I am not,
because someone in the past fight for my freedom .
If we forget the past, we can't go in the future.
Fotios
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Old 10-08-2006, 01:37 PM #12
lisag lisag is offline
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Fotios..if we can't change the rules in one place we can meet at another like here where our "collective" voices are heard on some issues that are more open to discussion...
I don't know what to do ... if people are afraid to speakout..and I understand the dilemas faced on other sites regarding this matter..spaekout and risk being banned..
I'm pretty darn vocal..but I still feel as though I'm walking a tightrope discussing this matter there... I also don't want my voice to be the only one that is heard..it not all about me..
But,bashing a forum to me is just not productive either..I mean there are alot of caring people on various forums.and many have done alot of good as well...is the answer to just pack our bags and leave ...for me its not..its a cooling off period I need...for others it may be their own personal solution..as everyone sees things differently..
I don't have all the answers..just for now.. I'd like to try to post at both places because there are people I care about here and there...Lisa

Last edited by lisag; 10-08-2006 at 02:30 PM.
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Old 10-08-2006, 02:11 PM #13
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Lisa
I don't like rules bad or good rules are rules.
Every administrator/moderators can ban me as Fotios,
but not my voice.
I have enough rules from ALS no place for other rules.
Is better to open friendly the door for the PALS and stay fair.
Fotios
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Old 10-08-2006, 02:20 PM #14
lisag lisag is offline
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Fotios..I understand what you are saying... at least to a degree..I can never completely understand... as I do not have ALS and nor your unique personality..but I do know what ALS does to a person as I do see it 24/7..and have seen the damage it has done over the past 7 years firsthand..
However, to me ...some rules have to exist..they even exist at this forum...a community needs to be safe and no one deserves to be threatened...
But, I do get the jest of what you mean and respect your point of view..Lisa

Last edited by lisag; 10-08-2006 at 02:25 PM.
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Old 10-08-2006, 03:06 PM #15
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Hi, lisag, and welcome.

I appreciate your asking about the guidelines.

BobbyB gave a good example about what might not be limiting in reference to the guideline stating to "limit the discussion of politics".

As far as questioning a moderator/administrator action, you can. For instance, if you feel that you were misunderstood and a moderator acted out of misunderstanding, you certainly can PM that moderator to state your concerns. To attempt to cut down on misunderstandings a moderator will contact the member first to ask them to edit their own post (unless action is needed immediately and you're not online) to open a dialogue from which to work with. Also, in an attempt to gain as much information as possible, the moderators work together and ask for input from all online at the time...again in an attempt to avoid misunderstandings.

If you feel that you're still not being heard, please PM myself or Doc John.

We've already "fine tuned" several guidelines to the specific needs of this community. They're guidelines for all of us to go by for the comfort of the whole. We recognize that there also can be specicial circumstances that will come about when posting.

Please remember that if ever a post is edited, etc., it doesn't mean that you've been warned or anything. It's just an edit. If behavior continues, then warnings might come way down that road for some members. I don't see that happening here, though.

If ever an issue arises that you feel the need to post outside of the guidelines for a specific reason, please contact myself or Doc John and we'll discuss it with you and work on something that hopefully can meet your needs.

You'll find we're very hands on. Don't ever hesitate to PM with concerns, suggestions, or just to say "hi".

I'm glad you're here.

KD
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Old 10-08-2006, 03:10 PM #16
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KimmyDawn,
Thankyou ...and very nice to meet you...Lisa
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Old 10-08-2006, 04:09 PM #17
fotios fotios is offline
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Lisa
Say big hello to Gary from me and big hello to you
and Gary from my wife Kirsten
I go for sleep now,
I hope tomorrow night to sleep with PEG .
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Old 10-08-2006, 04:13 PM #18
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Fotios,
So good to see you are still hanging in there...and good luck with the PEG,,, it should make life alot easier...Lisa
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Old 10-08-2006, 04:35 PM #19
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fotios good luck my friend, hope the best for you.
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