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Kohler

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Joined
Jul 14, 2010
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41
Reason
Learn about ALS
Country
US
State
WV
City
Fairmont
I have been coming here regularly for the last several weeks in search of information and support, and thankfully in my family’s case we have at this point ruled out ALS. As my sister continues to search for a diagnosis, I plan to keep visiting in order to keep learning and, most importantly, to keep up on the many wonderful people I’ve met here.
However, for those of us who do eventually rule out ALS, here are some observations I’d like to share about this part of the forum:

1) Having searched and read here quite thoroughly, I’ve come across quite a bit of posts from regular members expressing frustration about people coming here for a diagnosis, posting non-ALS symptoms, etc, including a thread about shutting down this part of the forum altogether. Although of course there are as many reasons for coming here as there are people, it’s my perception that although it’s natural for most people to frame a first post in the form of questions, symptoms, etc., a lot of us come here not so much because we think or hope we’re going to get a definitive diagnosis, but to gather as much information as we can, and MOST important, for the human contact, support, and comfort. Unresolved medical issues can leave one feeling very disoriented, frightened, and alone. So, my advice for the regulars with a great deal of knowledge and experience is to perhaps focus less on the diagnostic angle (which just seems to frustrate the people providing the information AND encourage those who may have an unhealthy fixation on their symptoms) and concentrate more on the support/comfort. For me, anyway—and please remember, that’s the only point of view I’m representing here—the most helpful posts were from people who simply shared their own experiences and/or provided an example of hope and support in case an ALS diagnosis does come.

2) On the flip side, new members, please be aware that in my short time coming here I'd say that on average there have been between 1-3 posts PER DAY describing similar symptoms, situations, etc (my own included). In general, the same handful of members come to this section to answer posts and offer support, which means that they regularly answer the same types of posts many, many times. On some occasions, the original poster disappears after only one or two posts, or keeps coming back with the same questions over and over again (although I hope the regular posters keep in mind that this does not consititute the majority). So, be aware of the time and effort that people are putting into answering your posts, and also know when to let it go.

3) Even though many people who visit this forum may be facing large medical bills/expenses (my own family included), I would like to encourage people to donate (see the link in the upper right hand corner; you can donate through PayPal, which is secure and easy). Remember, not only is the forum all volunteer, but most of the people maintaining this site do so despite serious physical limitations/challenges. Imagine if every person who came to this section of the forum seeking advice or support would donate even a dollar or two? Every little bit adds up to buy a piece of equipment or help pay for maintenance costs.

Finally, thanks to all the members here who have been so helpful, patient, and kind. After all, that’s what it’s really all about.
 
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Thanks, very wise words for all of us. Be well and I am so glad that you no longer have this disease hanging over your family.
 
A really good post, Kohler. Thank you for taking the time and effort.
 
Very nice job articulating the thoughts of many of us! Glad you can rule out ALS.
 
Would it be futile to expect at least a modicum of good manners as well? When a poster is perceived as annoying, is it necessary to thrash them? To berate them, call them names, humiliate them, bully them with a flood of words and insinuations? Tell them they deserved it because they are just so darn annoying? And to defend our own ugly behavior behind a facade of do-gooder self-righteousness?

I plead, once again, that members ignore posters they are annoyed by. I also plead, that if a member loses all dignity and self-restraint and throws the first stone, that you do not fall prey to temptation and throw the next one. We do not need a mob mentality here.
 
If you don't have ALS, why do you have an obsession about it? get off the internet and live your life. That's what I would do, without a look back at this dismal race toward a certain death. But that's just me! If you want to ruin the only life you'll have, go for it. Wallow in our sorry lives.
 
Would it be futile to expect at least a modicum of good manners as well? When a poster is perceived as annoying, is it necessary to thrash them? To berate them, call them names, humiliate them, bully them with a flood of words and insinuations? Tell them they deserved it because they are just so darn annoying? And to defend our own ugly behavior behind a facade of do-gooder self-righteousness?

I plead, once again, that members ignore posters they are annoyed by. I also plead, that if a member loses all dignity and self-restraint and throws the first stone, that you do not fall prey to temptation and throw the next one. We do not need a mob mentality here.

You appear to be annoyed over some posts you've seen. Are you ignoring them, or are you lecturing the rest of us about how we should behave so that we don't annoy you? How is your behavior different in this post than the behavior you are condemning, other than being unspecific and in less pejorative language?

The advice to ignore what bothers you cuts both ways. Unless the posts in question are an explicit violation of the terms of service. Then you should refer them to the moderators.
 
Very thoughtful post. Thank you and congratulations on not having to worry about ALS. Excellent!
 
Sorry I wasn't clear.

I am urging people to ignore annoying posts by not creating abusive posts. I certainly did not intend for my comments about annoying posts to be confused with my thoughts on abusive posts. There is a difference. To expand and clarify: I would never urge anyone to ignore abusive posts. Ignoring abusive posts by others condones them. My original post was to urge everyone to try and avoid creating abusive posts by ignoring annoying posts. Hope that helps-


Lydia
 
My idea is for everyone to step back and think before you answer a post. Is it in any way rude or hurtful. There have been many people over the years that have got my goat. I can probably count on 1 hand the number of times I've "lost" it. I'm not perfect but have gone through a lot of members here. Each one was the same but different. Scared, confused, and worried. So lets quit hijacking this thread with unneeded banter
Good post by the way Kohler.

AL.
 
Thank you Kohler I agree also that it was a well thought out and considerate post. While I have felt my share of UGGGGGHHH moments with some of the Scared who come on this forum. I do smile when we get a new member who is a special addition. I can remember Halfin's first post, it was as spot on as all of his posts are. He made me sit back and think wow this forum is amazing. When we get a new person who turns out to be wonderful, well then it is all worth it.. We have to kiss a lot of Frog's, but every once in a while we get a Prince or Princess who makes it all worthwhile..
 
Frog_kiss_21.gif


Ribbit
 
Barry you are so funny.. He is so cute.. thanks you are definitely a PRINCE..
 
Wow Kohler-very thoughtfully and gracefully said.

I try to live my life (and responses here on the forum) with the mentality that everyone functions from a place of 'good intention'...If I can keep that in the front of my brain, then I can usually temper my responses so that 'annoying' posts don't receive 'abuse' (at least I pray they don't!)
Peace,
Melody
 
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