I now understand BURNOUT

[kmendsley]

I always kind of wondered why there weren't more PALS people who replied to the threads on 'do I have ALS? and General things about ALS/MND'?

Now I understand. With the recent thread posts...I think a total of 4 new threads...and how many hijacked threads a certain new member has written in the past 24 hrs. I see that people in a high anxiety state don't listen very well.

I have tried and will continue to try my best and look and help where I can on these two threads...but I don't think I will make it as much of a priority to check it over and over again restating all I have already written in a previous post...at least to the same person that is.

I won't stop adding my advice where I can because I think that I add a different perspective to people freaking out...esp. the younger ones. There is a definite generation gap that I have noticed so I hope I can help in that area. Anyway...long story short...before I burnout completely on the forum I think I will be moderating my use of those specific threads to just once a day

 

[Jellycat]

Keeping your replies to that section to once a day sounds very sensible to me. I admire your giving spirit. I can't even manage to read that section much at all. In fact there's one thread title around these last few days to which I really just want to say.....why would you want it?

 

[kmendsley]

haha...yeah I know which one you are talking about Jellycat...poor choice of words I feel on their part. lol.

 

[brooksea]

When I first joined ALS Forums, I would try to help in "that" forum. But, lately, I just check in out of curiosity. It's the same thing over and over again. There is no amount of convincing the majority of these people that their symptoms don't jive with ALS. Occasionally and unfortunately, as you know, the symptoms do jive.

As a distraction to the madness, a while back the "Forum Follies" was started. But, sadly, some participants can no longer contribute .

 

[linzblkr]

I think that people all to often assume the worst. I've seen a few posts that I will admit have made me somewhat angry. If people would take the time to either actually research or wait for their test results that they would see that they do not in fact have als. It just really bugs me sometimes when I read these posts and they say are these als related. It takes 5 minutes to type into google and get a page that gives symptoms, outlook, etc. Maybe I'm wrong for the way I feel, but there are so many people with this disease why not show them respect in that way. Just my two cents.

Linz

 

[notme]

I think I need to do as Al suggested--and stop feeding the trolls. When someone won't listen--it's a waste of time to tell someone the same thing over and over.

I've noticed a lot of people recently seem to just keep adding symptoms--almost as if they figure if enough is added someone will say 'Yes, we think you have ALS'.

I don't get why the reassurances don't seem to be helping people much over there. I really get why trfogey posts in the manner he does a lot better now.

Unlike the majority of you over here--I'm undiagnosed--and really do understand the fear of the unknown--as I'm sure all of you have, too. I just figure that once in a while, I can make some of them worry less. Also unlike you great folks--I'm not dealing with anywhere near the level of disability you all face.

Has there always been such a rash of very young people over there? I've only been here posting for 3 months--and I tend to post way too much--but I don't remember them all seeming this young a few months ago. I was reading posts quite a while before I finally decided to join.

For some, there is just nothing that is going to convince them they don't have ALS. Just typing the letters in G will almost always pop up this forum.

I don't mind taking the time to answer--but I don't have to deal with knowing each day that I have ALS--and read people that are convinced because of a twitch or low stamina for a week or two.

Kellbell, as young as you are, I think your age just confirms for a lot of the younger new posters that if you can have it, they must have it, too.

too bad actually reading the sticky threads can't be a requirement before someone can post a question. I know i annoy several here with the number of posts I make--but since I can't concentrate on my writing right now, and am rarely working--I browse here quite often.

Some over there don't realize they are burning out so many of the people that could really offer the best information; and that's too bad.

 

[sadiemae]

I too very rarely post in response to the Do I have ALSers anymore. I used to a lot, trying to help. In my 18 plus months here, there have been about 3 or 4 people who did turn out to have ALS, and I was pretty sure at the time they did. I remember when Barry posted a comment about Alexandre (He's Baack!) that some people took as rude, and those of us who have been here awhile understood it exactly. Barry's comment should win something for best comment of the year!

 

[abbas child]

Kell Bell, I don't go there often anymore, for the reasons you stated. I guess like sadiemae, I saw a handful end up with this--or, in one case I believe it was a brain tumor--a serious condition, in other words. That kept me from commenting several times. And, there is one who has a very weird, difficult and even tragic set of problems following back surgery. But, the majority do seem, sadly, to be acting irresponsibly.

Yes, I haven't read the thread, but the one title brings a snap response to mind... sounds like he/she wants it.

Hope--wish the sticky thread reading could be required.

CJ, posted in your twilight zzzzzzzzzzz. ;-)

 

[hopingforcure]

Kel,
You got it. I think this section has done a lot of damage to the forum at times. Just so hard. From the time this part of the forum was started, only a few have been really people who had reason to be here. The rest have hurt those who are in the need of the section.
I have said it many times before, but will say it again.. The people who originally demanded the section, all ended up not having ALS, and have been gone for years... Really trying..

 

[tmasters]

Like several of you, I used to visit that section of the forum often and tried to help. But it's too frustrating at times with those that seem to WANT to have ALS. I hope Wright is still helping people but I would understand if he, too, was burned out.

-Tom

 

[kmendsley]

@notme Yeah I figured that might be the case. I usually don't fly my age around like that but I figured it would help that certain person. I sent that person as well a message letting them know it is extremely rare and that I have had other med issues that don't follow my age...for example I was diagnosed with breast cancer at 21...and now ALS at 24. Obviously, I am quite out of the 'norm' in medical standards. Thanks for the advice...I wil try to stop feeding the trolls as well

 

[rcharlton]

I posted a new sticky in the "Do I have ALS?" section.

Actually, as a junior moderator I'm not sure I have the authority to do this. So I am expecting dad (Al) to delete it later. Hopefully I won't be grounded.

Maybe the best response is "Please read the stickies".

 

[trfogey]

And now everyone knows the reason why I wasn't around yesterday. That, and the desire to make sure my 1000th post here on the board was something other than a post I've made literally hundreds of times before -- "No, you don't have ALS and here's why...."

notme hit the nail on the head (unintended, I'm sure) when she said:

"I was reading posts quite a while before I finally decided to join."

My reply to that is: And so did the ones we had in the past, the ones we have now, and the ones we'll have in the future. Quite frankly, if knowledge was the cure for these folks, we'd never have another one register, because the archive in the DIHA forum has an answer for just about every question that these folks could think to ask.

2800+ threads and nearly 32,000 individual posts in those threads -- an average of ten replies per thread. It's the second most active forum on the whole board. And it didn't even exist in the earlier days of the board.

The first thread in the General Discussion about ALS/MND is dated in May of 2003. The Patients with ALS -- "PALS" forum, same as the General forum, and the ALS Caregivers Support forum's first post was in July 2003.

The DIHA forum's first post was in late April of 2007 -- nearly four years after the other forums were started -- and as H4C will tell you, that was to give them someplace to go where the PALS and CALS didn't have to see them and their repetitive posts.

The problem in the early days of DIHA was that the only people who participated there were the undiagnosed -- the PALS and CALS ignored the place. Most of you aren't aware of this, but our noble admins have been so successful at attracting the attention of search engines that posts on here may show up on G o o g l e in as few as ten minutes after they were made. This search engine efficiency means that there are literally months worth of crazy statements and wildly improbable theories that went unchallenged at the time and come back to haunt us now.

No, folks, the people who join here to post in the DIHA forum aren't here for knowledge, for the most part. They get that -- and a lot of old misinformation -- in all the reading they do before they register and post. What they are here for is sympathy and validation -- "support," not truth. The (very) occasional one deserves support; the rest deserve truth.

The trick is being able to tell the difference.

 

[brooksea]

L M A O! "DIHA" DIHArds!

 

[trfogey]

I think of it more like a Rebel Yell, brooksea -- "DeeeeeeeHaaaaaa", like Slim Pickens riding the bomb in Dr. Strangelove -- but yours will work too. :lol:

Sheeeesh, first the Rockford Files last night and now Dr. Strangelove today. I'm really dating myself the last couple of days, aren't I? :lol: