Old 10-02-2012, 02:19 PM #1 (permalink)
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Default draw the line?

I've been watching the DIH/Is this ALS threads lately and to be perfectly frank with you all, I am amazed at what's going on. I am relatively new to this forum ( Feb 2012) and when I first joined,after losing my relative, I saw this place as somewhere to talk to people who had experienced and were still experiencing what I had come through. I was not disappointed. The amount of friendship and support has been tremendous. The advice, the backup, the fun, the tears, everything. I feel privileged to have met you all and had a glimpse into your lives. To cut to the chase, what is annoying me is the number of people who come onto this forum who are, quite frankly, hell bent on having MND/ALS. I understand that people have concerns and some of these concerns are sadly connected to ALS. BUT.....sometimes it is blatantly obvious that some of these posters are neurotic to say the least and paranoid most of the time. I know only too well how much time and effort it takes some patients of ALS to type only one line. Time and effort which could be well spent elsewhere. By what I've read so far, I can see that the people on this forum can separate the wheat from the chaff by a few posts. So why don't we, after they have been pointed in the right direction, draw a line under them and simply refuse to respond. Refuse to feed their paranoia. Don't let time wasting posts run to 50+ replies. Nip them in the bud and concentrate on people who really need help and advice. Keep in mind that there are people out there who actually get their kicks from forums like this and think it's a great laugh to keep winding folks up. Don't over respond to them. Direct them elsewhere if they do not genuinely belong here and refuse to answer one newly thought up symptom after another.
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Old 10-02-2012, 02:41 PM #2 (permalink)
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Default Re: draw the line?

Why don't you stop reading that part of the forum? You don't need to, therefore getting upset about it is a bit fruitless. There is a seperate thread for poking fun at these people, that you spend heaps of time at, doesn't that help? Some would fine that thread rather unsettling and the people who partake in the abuse, equally as sick as the anxious neurotic people on the DIHALS. You can go there, swear, call people names, abuse people, whatever you wish.

Until this horrible disease touched people's lives here, I doubt they knew a thing about it either.
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Old 10-02-2012, 02:41 PM #3 (permalink)
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Default Re: draw the line?

Thank you...amen!
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Old 10-02-2012, 03:59 PM #4 (permalink)
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Default Re: draw the line?

Scotslassie the thread that you refer to was a great help and comfort when I joined in 2007 when I was concerned about my husband having this disease. Luckily he dodged the bullet. The posters are no different now than back in 2007. If it distresses you that people spin their wheels and get very obsessed and repetitive just ignore the thread. There are always those who will response respectfully and with kindness and with honesty. I rarely visit now because of feeling embarrassed by the members who join in on making fun of these people or who go on at length in vengeful ways about trolls. That kind of juvenile behaviour just isn't what this forum has always been about. Yes having a sense of humour and teasing has always been a part of this forum, but ridiculing people is just so wrong.
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Old 10-02-2012, 04:05 PM #5 (permalink)
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Default Re: draw the line?

I'm sorry you have hang ups Ally. I don't recall swearing at people, or calling them names or abusing them. I think you are over reacting somewhat don't you. This is a forum. Where people can say what they want to say and knowingly leave themselves open to criticism from others with differing views. This I accept. Your response is your opinion but you have contradicted yourself in responding in the first place.
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Old 10-02-2012, 05:27 PM #6 (permalink)
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Default Re: draw the line?

I agree with scotlassie and that we should not respond to these types of posts. When we respond politely at first with our advice and they don't take it and keep badgering us still we should just ignore the rest of their posts. I think some people get on here just to poke fun of people who really have the disease. But, I really needed a laugh today and the post about her lips shrinking made me laugh so hard I about wet my pants.
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Old 10-02-2012, 05:52 PM #7 (permalink)
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Default Re: draw the line?

Laurel, I never said there was anything wrong with the actual thread itself. It is a very useful thread and has no doubt helped many people. Unfortunately some people push it to the limits at a cost of time and effort to others. THAT was the point I was making, a point which seems to have been misconstrued.
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Old 10-02-2012, 06:07 PM #8 (permalink)
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Default Re: draw the line?

We have ourselves tried to stop a thread from being posted on by stating POST CLOSED or ARGHH! but someone always posts again on it. I suggest we all try to limit posting repeatedly after we realize they are not going to listen. I have been amazed how many people actually posted after I had asked twice for them not to respond anymore.
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Old 10-02-2012, 06:12 PM #9 (permalink)
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Default Re: draw the line?

I'm posting this here, in hopes it will remain out of the radar of the new member who posted about her lips, and I believe that her thread may have been the trigger for the start of this one.

One of the first problems I noticed physically was the change in my lips. Those who have a process affecting their bulbar muscles often experience this. The lips just get flatter. The 7th cranial nerve, also called the facial nerve, is what gives our lips much of their shape and dimension. And, anyone who has bulbar weakness, whether it be from ALS, or another disease, understands why its not funny at all.

I'm not posting this to embarrass anyone, but rather to educate. You wouldn't know, if you had no reason to know. But, to assume because it has not touched your life personally, does not mean that it isn't something that can happen.

The main muscles of the lips work like a purse string, They draw the lips up into a pucker so that we can whistle, give nice poochie kisses, and not have food and beverage dribble out of the corners of our mouths.

This muscle is called the Orbicularis oris muscle.

Back when I first noticed a change, it was not only because my lips—the lower in particular—didn't have much of a "pout" anymore, but, because about a year previous, I'd had my lips tattooed with permanent lipstick. I worked crazy extended hours in the public eye,and it was a nice perk to not have to worry about lipstick. So, when the muscle mass diminished in my lips, all the of ink under my skin wasn't as stretched out, and the color darkened considerably. It became a dark line on my lower lip, darkest at the corners and for about a half inch from the corner on each side, going toward the center of my lip, rather than color enveloping my entire lower lip like it had before. That area also became wrinkled. Thankfully, permanent cosmetics aren't actually permanent, especially if you use any sort of AHA or BHA acids on the skin, and now I don't have the dark line, because the ink is all gone, just flatter lips, that don't pucker, can't whistle (and I used to be a really good whistler, even if I do say so myself!) can't keep food in like they should, etc. The left side of my mouth droops and I'm careful to never be looking straight into the camera for photos.

So please, think before you assume that what a person is describing is preposterous and open for ridicule and poking fun. It hasn't been fun for me, and I doubt that any woman, no matter what her age or position in life, would think its funny to be robbed of what is considered by society as an asset to her appearance.

And, to be clear, no, I do not believe that young woman has ALS, or PBP, the point is to not assume

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Old 10-02-2012, 06:13 PM #10 (permalink)
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Default Re: draw the line?

lassie, it is frustrating and upseting when some of the people go on and on. I do agree--there has to be a line drawn where you stop responding, but there is no way to keep others from responding again and again and again. I know I have occasionally said things to the DIH's but if they don't get it or are obviously baiting responders I just go elsewhere. Even though I hate that thread, it does serve a good purpose for some who really need it and I thnk most of us can tell who does quickly. I find it very disturbing that there are so many "sick" (in the head) people. I would give up a limb for my husband not to have ALS!

I gotta agree--the lips poster was very funny though!
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Old 10-02-2012, 06:51 PM #11 (permalink)
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Default Re: draw the line?

I can see both sides. I cringe now at some of my first posts, and I certainly got a lashing or two from some of the regulars, but in hindsight, those early rambling posts reflected my honest state of mind at the time. I recall being shocked and even offended when some of my comments were met with hostility or sarcasm, though I understand better now. Point is, no - we shouldn't endlessly humor people who refuse to listen to reason, but I don't ever think there's cause to ridicule people. I think if someone is really getting fired up about that area of the forum, take a break from reading and replying for a bit.

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