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Clearwater AL

Very helpful member
Joined
Aug 28, 2013
Messages
1,573
Reason
PALS
Diagnosis
12/2016
Country
US
State
NC
I may end up in disfavor with a few on this one. Yes, I’m back.

Also to new joining members.

The Mods are very knowledgeable, well intended, have good computer
skills and are great composers. But… they should not be taken as the
last word on any topic. Their job is to keep the Forum on topic, free
of spam, free from those with ill intent and yes… pass on their valuable
knowledge. Again, not to be taken as the last word on any topic.
So many of the sub-forums have gone nearly dormant as compared to the
vibrancy they once had nearly daily a few years ago.

We have so many members who used to post who have now regulated
themselves to occasionally stopping by or have become just readers.

We all do not have the computer skills others do. I have lost much of
the skill I once had. I could fire off a reply in the “Reply” window of a
topic within seconds or less than a minute. Now… as this Thread I have to
put it on Word first, edit, try to keep a train of thought, move paragraphs
edit again and thank the heavens for spell correct for words I once had no
problem with.

Some members reply to Threads saying this is a Forum for those with
ALS and those dying of ALS and their care takers. No… not really.
It does have many sub-forums of other MNDs. PLS for example… we
have a Moderator who has PLS. And it has a sub-forum
called “Could this be ALS?” The most read of all other sub-forums.
Strangely, members who say they don’t bother with it seem to know
what’s been posted on it. :)

Ok, if a Mod or other high ranking notation member posts something
you question, disagree with or have had a different experience with do not
be cautious to post your thoughts, disagreement, different experience or opinion.
So what if someone doesn’t like it or rebukes what you posted.

If you are concerned of your reaction score or number of points you’re
posting/contributing for the wrong reason. Start a Thread of your favorite
peeve or tree that will get you many “likes”

Don’t worry about your composing skills, sentence structure, paragraphing
capping the beginning of a sentence or word. The first poster that says a
a word about your post I’ll be on them like a duck on a June Bug ( and old
Southern saying). If I don’t get booted off for this. :)

My only want…? see the Forum maybe get back some of the active
participation it had nearly daily just a year ago or so on the many other
sub-forums.. Maybe it’s past that now.

Or, now… “It Is What It Is”
 
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KimT

Forum Supporter
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Joined
Nov 18, 2014
Messages
3,528
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
Al,
I think one of the factors is all the Facebook Groups that are extremely active. There is one for pills, one for pot, one for women, one for PALS only, one for CALS, one for FALS, and many others. I see lots of daily activity there. The take from those groups is that, on most of them, you can post links to products. I sometimes hang out on ALSTDI because it is pretty much uncensored and there are some active threads on supplementation that I find interesting and helpful.

Just my opinion.
 

Kristina1

Senior member
Joined
Jan 26, 2017
Messages
666
Reason
PALS
Diagnosis
03/2017
Country
US
State
MA
I agree about FB. Im in several ALS groups there and they are quite active. It's also easier from a phone. I prefer this forum for solid information though. There's a very knowledgeable core group here.
 

blitzc

Distinguished member
Joined
Apr 20, 2018
Messages
242
Reason
PALS
Diagnosis
01/2018
Country
US
State
OH
So here are my thoughts regarding facts about the active participation.
I personally don't have a Facebook account, so this forum and other ALS research sites are my only source of information. I believe many new members have FB and use it as Kristina mentioned above. There is obviously a changing population of members here due to a variety of reasons, most notably the disease and its effects. So if the conversation level has dropped, perhaps there are factors out of the moderators control.

One of the most contributing factors to the atmosphere here is the ability to contribute without concern for rebuke. Can we keep it this way, please?
 

Atsugi

Legendary member
Joined
Jan 11, 2011
Messages
5,187
Reason
Lost a loved one
Diagnosis
12/2010
Country
US
State
FL
Looks to me like EVERYBODY posting on this issue is totally right. I agree. Except for one thing--in a minute.

It's great to have an active forum. I avoided other forums because I was never sure if the information was good enough to trust.

But here, I'm very happy with the info. I guess it's because I was active here for so many years--and I've met or communicated with some folks behind the scenes--that I got to know some people well. And I can assure you, we have the best, smartest, and most ALS-smart people on the web right here. They might be quietly lurking, but they are making sure that our quality of info stays the best.

Thanks for bringing this up, Al.
 

Trippy

Active member
Joined
Sep 8, 2014
Messages
62
Reason
DX UMND/PLS
Diagnosis
01/2014
Country
US
State
NY
I’ve been wanting to directly contact some of the lapsed members, particularly in the PLS sub forum, to check in. Wish I had their email addresses. I don’t post much myself but I do try to keep up and educated.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,970
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
It would be nice to have a buddy system of some kind or perhaps teams where people shared contacts and or fb ids or asked someone to contact their buddy if they became unable to come to the forum. I think the pls folk go elsewhere for a variety of reasons. On this forum it seems the faster progressing folk and their CALS are most active usually. It makes sense because of their changing needs. But I also agree about FB. There are lots of groups with different goals- something for everyone- and some groups are very lightly administered which appeals to many.
 

Clearwater AL

Very helpful member
Joined
Aug 28, 2013
Messages
1,573
Reason
PALS
Diagnosis
12/2016
Country
US
State
NC
I have done a lot of research concerning Facebook. I keep Facebook
at a cautious arm’s length for security reasons. I have a Facebook page.
I do not discuss ALS and most of all… politics.

A few years back I used to be very active on Facebook then someone
posed as my daughter and another posing as my nephew. My daughter
did not have a Facebook page.

I kinda cringe sometimes that I have pictures of me on Facebook but…
I have an uncommon name and yet there are at least 25 people in this
country with my same name. One is a famous artist. And… yet I have to
for those down in Florida who knew me as “Clearwater Al” I’d like
to hear from.

Yet, people concerned about privacy here on this Forum in their bio
they put something like “Somewhere – US” ??

You reveal a lot more about your personal self on Facebook than you
do here.

Just a note…Microsoft has done a good job of keeping news on the
back pages of the news where recently the Cloud has been hacked.
Millions of people now have their info “out there.”

Just me… I don’t want anything of my health condition on Facebook
and sometimes I wonder about this Forum. But… we live in a world
now where your phone even though you’ve turned it off and the
screen is black… it still maybe listening and your camera may be on
without you knowing.

I guess for all of us... this desire for our own internet security is like
a circular firing squad. Don't do it here but leave yourself open there.

Whatever… just trying to bring conversation back to the Forum.
Maybe I can start something on one of the other sub-forums.
 
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KevinM

Active member
Joined
Mar 30, 2019
Messages
87
Reason
PALS
Diagnosis
06/2019
Country
US
State
FL
I couldn’t agree more about revitalizing the forums and sub forums, Al. When I joined the forum as my diagnosis was unfolding last spring, there seemed to be a lot more back and forth, and I learned so much and was buoyed by the often positive comments and individual experiences. I know that several of those great folks are now gone, but damn.

My big concern is that some of the most active and entertaining posters that are still with us have now progressed to the point where the challenges of daily life far outweigh the effort to participate here and draft text for a post. (If anyone knows the whereabouts or status of Vincent or NotBrad, please let me know. I always enjoyed their optimism and comments.)

I’m also discouraged by the lack of new information posted to the new research and clinical trials sub forum. The reality is that there is very little in the way of near term therapies or potential drugs out there beyond the NurOwn and CU-ATSM ones we know about, but it is really discouraging nonetheless. I keep up with ALS News Today, but the studies on fruit flies and mice seem so speculative and distant that I get more depressed than excited. In the language of my youth, quite the buzzkill.

I dream of checking in one morning and finding some genuinely exciting new discovery (whatever happened to repurposing Telbivudine, which is already an approved drug?), but I guess it is what it is given funding levels and the “process.” Kind of dampens hope, though, with the clock ticking so loudly for everyone here.

Anyway, thanks for bringing this up. Here’s to a more vibrant forum once again! Kevin
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
2,889
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
Not Brad was here the other day. You can click on someone’s avatar, and it says when they last signed in.
 
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