Remember We are people facing ALS

[suzannj]

An Idea . . .

Hi Everyone,
I haven't posted in quite a while, per my own neuro he gave me orders to stay away . . . but I was following someone's case and just mosied on over (for a moment ) and saw this thread. It's a hot one, so I had to throw down my two cents while here.

This same exact issue was brought up a long, long time ago and the same type of back-and-forth dialog took place. I thought back then of a way to resolve this but never said anything. Since this topic has arisen again, I'll put it out there and maybe the Moderators will give it some thought (if it's even possible to do what I'm suggesting).

When I first joined, a Forum-generated pop-up would appear asking if I would like to give a donation to help keep the Forum running. And, when my e-mail host company changed their format, an avatar showed me around the first time I logged on after the changes. What if the Forum did something along those lines, but only when posters / members first clicked on the "Do I Have ALS? Is This ALS" link? I have ZERO knowledge of how the technology would be applied, but if possible maybe it could be something like:

1) New member clicks on the Do I Have ALS link, and attempts to start a new thread;
2) If the post starts with or even uses the word "hypochondriac" a horrific shock is administered through their keyboard rendering them incapable of typing for several days (just kidding! :mrgreen
3) Okay seriously, when the new member attempts to post a question for the first time / start their own thread, the site would somehow recognize that initiative, and a pop-up of sorts would launch
4) The pop-up could just be an information window pointing out the Search feature, Stickies, etc., but maybe the next pop-up (which would have to be read before a post was allowed to go up) giving some very basic, easy-to-read Q&A that we see ALL the time on the Forum about EMG's, twitching, progression, and then also clearly point out the El Escorial criteria (sorry I didn't take the time to look back just now and look up the proper spelling on that one) it just MIGHT steer some of the more 'out there' questions away.

For those who say, "Yes Suzann, but all of that information is already on the Forum if people would just bother to read it". To that I would say, I agree 100%, and I also know that coffee cups these days tend to warn people that coffee is hot. People don't read and/or pay attention. They want quick tid-bits of information right in their face that can be quickly scanned and hopefully absorbed. It's sad I know, but true. Take that fact of today's society, and add in someone who is scared and has the, "I JUST NEED TO TALK TO SOMEONE NOW!" feeling, and there you have a perfect recipe for worriers who post a million questions that have been answered a million times already.

I know this was a long one (is anyone still reading? ) I hope I was able to put my ideas out in a making-sense sort of way! LOL Anyway, I better go. My neuro may have spies out there watching to see if I'm on here!

p.s. I also LOVE the "ALS is like snowflakes" analogy. It is so completely perfect and if any portion of my idea is used, THAT should definitely be on the pop-up information!

Take care everybody,
Suzann

 

[Al]

I read your whole post and like the shock idea and possibly some others. Food for thought.

AL.

 

[joelc]

I also read the whole post and agree that something needs to be done. This seems to be getting a bit out of hand lately.

As Al said - food for thought!

 

[brooksea]

Cool idea! If it would only work! Thanks Suzann.

 

[Lorie]

My idea?

CJ- Someone is listening.

Here is my IDEA: For all the people that think they have ALS. The ones that have not been to a Neuro. or have attempted to have themselves checked out and are constant worriers.

:idea:INVITATION:- Please come spend one day with me, just one. That is all it would take. Then they would take off running and never look back at ALS.

Anyone up for it?

Lorie

 

[trfogey]

The simplest solution, probably, is to prevent new users from opening new threads until they have had x number of posts. If all they could do was read existing threads and respond to those threads for a while, it might get the point across to them. Let the hypochondriacs thread-jack from each other -- it'll keep them walled off in their own little world.

Of course, the moderators would retain the power to waive that requirement and award full privileges earlier for those who demonstrate a willingness to join with and contribute to this community, as opposed to simply taking from the community.

Just a thought.

 

[liz]

CJ - They are not listening because they all think that they are the ones with serious concerns and that this thread is about all of the others but certainly not themselves.

Lorie - I agree. I also think if these folks were to stumble upon a live ALS support group they would never dream of walking into a room full of people with walkers, wheelchairs, wasted limbs, neck braces, garbled speech, drool, breathing equipment, etc. and start asking questions about their own symptoms. Yet somehow when they encounter an on-line support group they see fit to jump right in. It's like they don't get that we're not just text on a screen.

I was here when the Do I Have ALS? section of this forum was created to appease a particularly disruptive, even nasty, group of non-ALSers who were adamant about their right to be here. Nobody wanted to exclude all of the undiagnosed for fear of turning away anyone who might soon be "joining the club". Unfortunately, the existence of this Do I Have ALS? section is construed by too many people as an invitation to ask PALS for reactions to their symptoms and, rather cruelly, for reassurance that they are not as sick as we are.

 

[rose]

I agree that trfogey's idea is simple and would work well. The format of the forum already has checks in place to where members cannot view photo's, form "friendships" and probably some other features until they've reached a set amount of posts.

I would hate to think that asking a question would ever be off limits for someone who truly needs to get at an answer, but limiting new threads would not cause this. I'm thinking that all posts are read within a timely manner by at least one moderator, so no one who truly has something unique to ask (whether or not they're facing serious symptoms) would go unread. Because, like trfogey said, they could add their question to existing threads.

The added dimension of moderators having discretion as to how many posts a new member made before having the privilege of starting new threads would be very helpful as well.


Required reading pop ups would be good, except that people wouldn't read them, and if they did, would think that in their special case the information did not apply.


... the "shock therapy" concept is sooooooo funny BTW

 

[Zaphoon]

I like what Rose had to input and agree with the "shock treatment" idea!

Zaphoon

 

[Jennifer51]

LORIE not only am I gving them an invitation to spend a day with me I am actually giving mine away FREE....
Personally I never looked at this forum before I was diagnosed and then I would look and go away, not liking some of the things I was reading. It took me some time before I was able to join. Now it keeps me sane and I have made many friends and gained so much support and learnt so much..that is what this forum should be about....so any hypochondriacs reading...if you want you can have mine...if only I could find a way

 

[BarryG]

Jennifer, same here. It was almost a year after I was diagnosed before I came onto this forum. I knew that it was here but I didn't think that I had any need for it or had anything to offer. Since coming on the forum I have realized how much I need. If it will help I'll make an offer to talk on the phone to anybody that has questions. Go ahead, call me up and I'll talk at length about about twitching. Not that you'll understand any of it, but that's not important cause you won't be listening anyway! ;-)

Liz, you are so right when you talk about how the impersonal, internet connection allows so many people to ask questions that they would never ask in a face to face group. Not that that is necessarily a bad thing because many people that truly need to be here would be reluctant to talk if they couldn't be anonymous but like the thread title says we are real people with real problems so treat us the same as if you were talking to us face to face or on the phone. I like the idea of delayed thread starting abilities. This might make some people look around a little before posting.

I love the shocking idea!

 

[maryroseuk]

the other side of the coin

I dont understand the point of having a thread asking do i have als could this be als, if people are getting moaned at for asking that exact question... mmmmm

I was very thankful for this section on this forum during my diagnosis, and would have gone mad without it, if people arnt intrested in reading about peoples fears, then please just dont read this forum section.

Casey :grin: :grin:

 

[brooksea]

Casey,

After you've been here a while you will get quite annoyed at the ones that obviously do not have the symptoms of ALS and will not listen to good judgement by fellow forum members. Once you reply to their posts several times to assure them they do not have the symptoms you can become put off by their insistence that they have ALS/MND.

Nobody minds helping those people that symptoms obviously point to some type of neurological problem! We want to help! But when you get a 21 year old weight lifter that fears one bicep is smaller than the other and he thinks he now has ALS, well - it's just too much sometimes!

There is so much info on the front page of this forum and with the use of the search button people can find tons of info.

 

[liz]

Casey -

You seem nice but I feel that your comment really trivializes an issue many of us feel strongly about. You have posted here two times (one being your post above) since September 2008 so you have not had the experience of being bombarded daily with these queries that us "moaners" have been dealing with in your absence.

 

[maryroseuk]

hi again

Just thought id stick up for the people that annoy u all as i was once 1 of them myself, and as i said this forum section really helped me, and no i have not posted in a while but i do look at this all the time to see if there is anybody that i can maybe help or put there mind at rest. as i said before y not just not look at this section of the forum, id hate to think this thread made scared people feel even worse and bury there feelings when somepeople that dont mind helping or listening to the same thing again and again as i said before this section is called do i have als.

Smile.

Anyway take care