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.

I don't know but we're certainly open to suggestions!

Well Doc

You are for sure but maybe just maybe you are the only one.

Thelma, my mother always told me that if I wasn't part of the solution, I was part of the problem. :)

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

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

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.

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.

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 ?

DO NOT STOP POSTING BOBBY!!!

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

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

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.

:grouphug:

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 ?

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!

:D i'm all for helping carrying on conversations here.

support and friendship is important..whether we have had or have als in our lives.

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

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.

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.

Me too Thelma. I wonder about Bob of Bostons wife that he was caring for.

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.

I have sitting in a leter holder one of my most treasured things. It is a letter from Jandel that she wrote about 2 or 3 months before she died. I sent a copy of it to Bob and he was so touched by her doing it. they were 2 great human beings.

Bob died within a year or so of Jan's passing from I think a massive heart attack or an aneurysm I am not sure which. His wife passed away a year later. Carol was so ill and he was so good to her. I remember him telling of the trip he took her on and she didn't know it but loved the feel of the sun on her face. That was enough for him.

It is such a loss of all the work JanDel did for PSP and I really loath the fact that, her words, they are not put back on for those who need them so desperately.

But who said the world is just....................not me

I knew that Bob had died unexpectedly Thelma...he did take such good care of Carol..I didn't know that she had died too. I spoke with him when we were in England and we had planned to go to Stonehedge together but he was not feeling up to it that day. His voice on the phone sounded exactly as I had expected it to. He was a lovely man. Both he and JanDel were wonderful people.

Thanks for telling us.

My goodness that disappeared before I could respond to it. I must agree with what John posted...

"Should this forum fail, then the blame must rest width the membership as its future is dependent on our actions. From what I have seen of *** it appears to be aimed at a different sector of the ‘market’ from ‘***. *** as I have said before ‘it appears cold and uninviting' and may well not appeal to everybody as a first choice ‘home forum’.

Lack of participation will make any forum fail. You can lurk and read all you want but if you don't contribute you'll have no one to blame when there is nothing here to read.

Thanks BobbyB for sharing.

*administrative edit*

Good grief Thelma....I wouldn't dream of thanking you. I quit hugging you cause that used to tick you off too.

*whisper....taking your suggestion here and posting from the heart. :wink:

Hi Alffe.
At this point I'm just confused.
I 'm not even sure what happened as I just logged in today.
I'm not sure if the quote you posted was from Doc John or another John.
However, I don't know of "any" ALS forum that seems cold and univiting.
A long time ago , a couple of moderators on one got overzealous on one but to me that is now history and water under the bridge.
Some forums are more scientific and medically focused in nature -- but different PALS and CALS focus on different things.
Some focus more on experimental meds -- some choose that route others don't.
Some like this one post information and news mainly.
All forums have their place and serve a valuable service.
But , a forum is both what it's administrators and "all " members make it. That I do definitely agree with.
The most vocal members however , are not always right and do not neccessarily represent the majorities opinion --and I'll include myself in the vocal group-

I don't post many news articles myself. Though I do read them , find them interesting and appreciate them.
Everybody has their own unique pesrsonality and capabilities of contribuiting to a forum.
I feel the best way I can help others for me personally as I have been a CALS for over 8 years -- is to help try to solve and share experiences of how daily problem were handled or take fear out of specific challenges in dealing with the disease, when a question is asked.
But no one solution works for all, and no one forum will address all PALS and CALS various needs.
If a question is posted I 'll try to help if I can., on any forum I am a member of. But , you can't share experiences or support others if questions are not asked.
Lisa

It's my fault you're confused Lisa.

No, my quote was not from our doc john.
My intention is/was to try to generate some activity on this forum because we can't expect BobbyB to do it all. At one point this afternoon there were 35 people lurking here and no one posted a word.

But you're absolutely right...it takes a question...conversation is a two way street.

How are you today? *grin

:)

Whew !!

I feel much better now.
Though, I don't know why people want to lurk and not post.
Maybe some simply can't and that is understandable . But others can.
Lisa

:D count me in as lurking.

:D Ok there were 34 people and a monkey! I'm going to bed now. *grin

monkey see monkey do.......lol:grouphug:

hahahahahahahaa

:grouphug:

spambots will also show up as lurkers