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 01-06-2008, 01:44 PM #11
lisag lisag is offline
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I absolutely 100 % agree with Curious, you have done an invaluble service to PALS and CALS here.
Just because people do not directly respond to a post , does not mean it is not read.
The what kind of world post has had hundreds of people reading it here in this forum -- and clicking on it . And thank - you so much for bringing the project to our attention.
Thank you so much for all you do in raising awaremess and all you do in the ALS community . Lisa

Last edited by lisag; 01-06-2008 at 04:51 PM.
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Old 01-06-2008, 01:49 PM #12
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maybe they will join and hit the "thank you" button. but if not..bobby..your posts are some of the most read here on nt. they might not get replies..not all are discussion type but information.

but look at just this page..page 1 of als. pd members...lyme members..just member of nt have been posting and starting threads. so this forum is doing ok.

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Old 01-07-2008, 01:08 PM #13
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I too have done a lot of thinking about why this forum doesn't fly and here are my opinons.

While the forums Lisa talks about are just fine and doing good service to the Als community can you not envision that this one can have the same effect but on a different venue.

There is an ongoing life with Als and while raising money is necessary it is not the be end of the problems those with Als face.

So why can't you exist here Bobby as well as at your other pursuits. I have never mentioned you leaving and yet you seem to at times infer I have. You are great here. But in my own opinion you are an anomoly of someone with Als. You have a great supporting family and many don't.

There are so many that indeed have no one who is willing to stop and spend the time required to talk or listen and give help to the daily grind of their lives.

So you stay and lets just expand the resources here to include those who for that brief period in time need to escape Als. I hope that clears this subject of you leaving away forever.

Lisa

You and I know from experience that a simple hello and how are you doing is the best medicine on some days you can get. That is all i am saying and if you pop in here from time to time leave a message because there is a lot of people out there in the community that admire you and Gary and look for you to see how he and you as well are doing. It all takes the same length of time.

Curious

I have read this site and the former one for over 9 years now and know it can be what I envision and I don't think it is doing well. That is why I am soliciting Pals and Cals to respond and see what they say or want. I know you have had the experience of Als in your life as have I. My Father and my brother and my grandson. A site like this wasn't available to them and how I wish it had of been.

So once again if anyone is coming here to read. Then while you are here please say in your own words what you think.

I don't want to cause any commotion so maybe we could just state our own opinions and not answer to others and start a dixcussion going tht will lead us all astray.

Me I want a site for just plain communication of all aspects of people and not just research and monies.

Can't they all be in one spot ?

Last edited by Thelma; 01-07-2008 at 01:13 PM. Reason: No reason I can think of save to try and be clear and precise
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Old 01-07-2008, 02:45 PM #14
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I lurk here...daily I read this forum Thelma. I personally don't know anyone with ALS so I don't feel right about posting here. I do know that I admire the heck out of the people who suffer with this death sentence.

If just posting anything while reading here would help...lots of us can do that and maybe generate some activity. I know that Bobbyb has a life away from here and he's busy trying to live it.

He also taught me how to do THIS. *grin

edit because THIS didn't get bigger.....
I wonder if Doc is still fiddling!
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Old 01-07-2008, 02:49 PM #15
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i'm all for helping carrying on conversations here.

support and friendship is important..whether we have had or have als in our lives.
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Old 01-07-2008, 03:56 PM #16
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Thelma,
I admire everyone living with this disease.
There are no right or wrong choices to make and everyones personality is different.
In 8 years my focus has shifted dramatically as Gary became more advanced., I spend much of my time focusing on traches, vents, catching secondary infections early.
This might be a bit much for people newly diagnosed with the disease.So, I only tend to post on these things when questions are directly asked though I do go into great deatail ., as fears are often worse than reality.
I don't spend aot of time on tracking experimental medications any longer. As Gary has not tried any in years.
However, I understand why some people would gravatate to a site that focused on tracking experimental treatments.
I think " all " ALS sites provide a valuable service. This one included.
I am glad things are much different than the old days.
That an ALs site now exists so people can track meds with experimental things., with graphs and charts.
That one site has a legitimate AL S researcher to answer research questions and sift through confusing prsss releasing and published med.
That a nurse who speacializes in ALS can help answer medical and practial questions and moderate a board.
To me , the more ALS resources the better.
For me, I mainly read the news articles and human intrest stories posted here.
But, I really don't comment on the stories as every one deals with this disease in a different way. And there is no single right way.
If someone, however has a question I may can help with I try to help with it if I can.
Lisa
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Old 01-07-2008, 04:08 PM #17
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Maybe someone just needs to ask some basic questions that will start a discussion?


Like - How do you cope with ALS on a daily basis?

and-

what treatments have been most helpful for you?



those kinds of questions usually spark responses on the other subject forums.

I'll post those 2 as threads and we'll see what happens.
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Old 01-07-2008, 05:18 PM #18
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It's not that easy hon. The Als population doesn't have that advantage of typing long letters in posts to explain anything to the uninitiated. They may take hours and hours of painstakingly typing with a movement of the eyebrow or a slight blowing into a wand to get a full paragraph down on paper.

When they do and you read it you can see and feel a manuscript in a few words.

That is why I loath when anyone changes or trys to interpret their words and the worst inhuman event is when they are removed.

Lets sit back and wait for what ever happens here and respond accordingly. You know they and they alone know what they feel and want to talk about and we need to not comment unless asked.

Besides that we are asking questions of the wall and waiting for it to speak back. Wait for the human being to talk to.

I know for a fact some people who are reluctant to post because they are limited by the amout of words me and others use. But you know I am in person just as loud and opinionated as I am here.

But I guarantee anyone who wants to post here I will not change lol

Dammn I miss and wonder about so many who are not here now.
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Old 01-07-2008, 05:23 PM #19
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Me too Thelma. I wonder about Bob of Bostons wife that he was caring for.
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Old 01-07-2008, 05:28 PM #20
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Thelma,
I am trying. And responded to one of Jo's threads.
You are absolutely right some people in advance stages of the disease have to spend alot of effort to type. And for some it is just too exhausting period , so I would not want anyone to feel they had to type on any forum as just reading is valuable too. .
But, several PALs in beginning and mid stages can type as well as I can.
( though I know my typing is horrendous and I do not have ALS my husband does)
I understand there may be PALS that read here that simply do not have the energy to respond to post. That is one of the reasons why I think Bobby's posts provide quite a wonderful service on this forum, as there are some PAls who do not have the energy to type at all . Though I know Bobby has to work hard to copy and paste much of what he posts.But his contributions are enormous to this forum and the ALS community at large.
There are other PALS who can type quite well in the beginning stages of this disease and who do on various ALS sites .Many type much more eloquently than I do , and most CALS type alot better than I do as well .
I guess , I just don't understand what you want us to do ? Or how you want the forum to change ?

Alfe, I have not seen Bob of Boston in awhile either. I participate in about 5 ALS forums though I mainly read most of them . But , I have not seen his posts either and wonder as well.
Thelma, if there is anyone I may can help locate, please let me know . I found various PALS and CALS at various sites.

Last edited by lisag; 01-07-2008 at 07:12 PM.
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