Old 05-07-2010, 02:47 PM #1 (permalink)
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Default is this ALS thread

I read the call me names thread and the thread previous to it that turned ugly... I really dont like reading things like that. I know that no one on here intends to be mean and malicious.
Just a question I will put out there, but do you think that the forum should even continue with the "Is this ALS" thread? It seems to attract a lot of negativity. On occasion, I have read previous posts from this thread and the sad fact is, no one on here can really offer more information other than, talk to your doctor and if you dont like the answer, get a second opinion. I think everyone would like to help, but it is so difficult to diagnose, especially online, that even the most kind hearted and helpful member ends off coming off sounding cold and disinterested. I have read responses by those who asked about their symptoms, misunderstood the response and came back angry with an "I told you so" response. There doesnt seem to be a win response on this one.
What are your thoughts?
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Old 05-07-2010, 03:32 PM #2 (permalink)
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Default Re: is this ALS thread

Jodi, I agree with all that you have said. The only thing is, if we eliminate this sub-forum then all of the twitching "yeah but" types would just be asking their same question and not listening to the answers on the main forums. There is no way to stop them, at least this way I can (mostly) ignore them.

As soon as I typed this I realized that I was becoming a "Yeah but" Sorry!
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Old 05-07-2010, 03:43 PM #3 (permalink)
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Default Re: is this ALS thread

Well, if that forum was not available, then they would flood each forum with questions. Sometimes it's just so upsetting and I really do try to stay away from commenting on that part of the forums, but sometimes I feel compelled to reply when someone is being ridiculous. On the other hand, I don't mind trying to help someone that seems to have legitimate concerns.

Barry is right! There is no way to stop them.

Good luck to everyone that deals with this disease!
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Old 05-07-2010, 04:07 PM #4 (permalink)
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Default Re: is this ALS thread

I thought of that after I posted too. Just really find it depressing as it is a no win topic. You are right, I just wish everyone could understand that the Forum is a place for support not diagnosis. Sigh.
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Old 05-07-2010, 04:34 PM #5 (permalink)
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Default Re: is this ALS thread

Any particular reason that you didn't put this post in that forum? Maybe some of the troublemakers, malcontents, and abusers of that forum need to hear that even their fellow undiagnosed find them tiresome.
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Old 05-07-2010, 04:46 PM #6 (permalink)
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Default Re: is this ALS thread

trfogey, just so you know, Jodi is on here in support of her friend Joy and is one of the best friends that a PALS could have. And I think that she is correct in posting it here so that there could be a rational discussion without rancor.
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Old 05-07-2010, 04:58 PM #7 (permalink)
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Default Re: is this ALS thread

I think that people need a place to go with question..I have thought that tifogey does a wonderful job at figuring out who really need sap port and help and others that he so nicely gets rid of.....now when and if he gets tired of dealing with this sight,then maybe time for a change?..
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Old 05-07-2010, 05:07 PM #8 (permalink)
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Default Re: is this ALS thread

No problem, Barry and Jodi. It just occurred to me that the people who need to hear this aren't the PALS and CALS, but they are the ones in that forum. Second, expecting a discussion on this particular subject to proceed without rancor seems to be somewhat unrealistic to me. Fruitful, non-rancorous discussion can only move forward when the parties involved demonstrate good faith. I haven't seen a lot of that around here lately where this subject is concerned.
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Old 05-07-2010, 06:48 PM #9 (permalink)
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Default Re: is this ALS thread

Breathing in and breathing out with full deep breaths. The simple resolution is when you have people on that dreaded "Do I have ALS" thread you BAN THEM AND REVOKE THEIR MEMBERSHIP the FIRST time that they turn into head spinning pyschos that spew green bile. It is a necessary evil and also does benefit most of the people that go there. My first posts were to that thread. It didn't even occur to my to post on the other threads that were so clearly just for those that are AFFECTED by the disease and had a diagnosed. MAYBE PUT A DISCLAIMER ON THE TOP OF THE THREAD that no one has to answer them, that this is not medical advice and that we do not tolerate rudeness or disrespect to our forum family. I don't know about your family but in mine, we DEFEND one another. How about asking trfogey to be the monitor/moderator and giving him the power to click those idiots into cyberspace?! Honestly, where do all of the problems here begin and end? From that thread and it is simply because it is allowed. Have you seen the abuse that trfogey takes from those idiots and he is typing with his toes for God's sake! Wright goes on there and gives hours of incredible information for FREE. I have some other ideas and thoughts that I posted in this thread Abusive Posters destroying our forum HOME
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Old 05-07-2010, 08:40 PM #10 (permalink)
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Default Re: is this ALS thread

Whoa, folks. I'm not campaigning for a moderator's job. I appreciate the confidence some of you have in me but I'm not a good fit for the style that everyone likes around here.

The Do I Have ALS forum is, by its name and by its nature, a place where questions are going to be asked and answered. When you have an area like that, you've got to provide accurate information first, last, and always. Sometimes, accurate information is going to upset people. That can't be avoided; it's part of the human condition. Some people are simply more sensitive than others. Some people aren't prepared for the answer they receive because they have been lying to themselves so long that they can't deal with reality. Others are simply unpleasant people to deal with. So conflict is inevitable.
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Old 05-07-2010, 09:02 PM #11 (permalink)
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Default Re: is this ALS thread

Do I have ALS is a common statement from anyone who is trying to find out. The problem on the forum is us! We tell them no you do not have ALS in 27 different ways and yet they still think they do. Very simple solution when the topic goes sour write THIS TOPIC IS DONE YOU DO NOT HAVE ALS then we put on our adult thinking hats get up our nerves of steel and make no further comment past that point. The topic will quickley pass into the archives we make it harder than it really is.
God grant me the serenity to accept the things I can not change. The courage to change the things I can and the wisdom to know the difference.
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Old 05-07-2010, 09:10 PM #12 (permalink)
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Default Re: is this ALS thread

Hello, I posted here because my query is to those who are regular readers and supporters of the forum and not those who are possibly abusing it. I have responded to the odd person (I mean that in the nicest of ways) who has wondered about the possibility of having the disease, but I have to say that sometimes it is frustrating. Like others, I can not imagine spending time worrying about toes or fingers or distant relatives who may have contracted the disease when it seems that for now, the person is otherwise healthy. Also it is frustrating because all I can say is talk to your doctor and dont be afraid to get a second opinion. Yes, there are symptoms that could be problematic... could be the onset of ALS, but how can anyone say from here, on here?
I guess we should try to respond with respect, be as kind as possible and if there is an abusive member, it should be reported. Kay Marie... you stated that you reported an abuser and this person was not reprimended. I think out moderators have a big job as it is and maybe it is a matter of not having the resources to keep abusers in check.
Anyway, please do not let one or two people... or alter egos... what ever the case... sully the thoughts and feelings of those here on the forum.
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Old 05-07-2010, 09:23 PM #13 (permalink)
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Default Re: is this ALS thread

I had words with an assistant in my husbands neurologists office yesterday and when the assistant told me to just be patient, that the doctor would call me "today or tomorrow" I just had enough and used what my husband calls my "business voice" with her. Shortly thereafter the doctor did call me and I ended up using my "no, you are not God" voice with her. So, now I am nobody's baby at that office - but I did get the answers to my questions - which really were urgent since I had to make a decision regarding some surgery for my husband to be done Monday morning. Geez, this whole diagnosed is a hard enough reality to deal with - without people just acting like it's just business - hello - this is our life - my husbands life literal and the love of my life that I'm losing. It isn't business, it's personal - real personal.
I didn't have anyone else to spout off to - so thank you forum members for allowing. Mary (oops - posted on the wrong thread site. sorry - I just did it wrong. Mary

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Old 05-07-2010, 10:04 PM #14 (permalink)
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Default Re: is this ALS thread

I completely agree! True, there is no need and this is not place for, name calling. However, the uncertainty of not knowing what you have (medically) can be very frustrating! In that case, I understand the need for many people to come to this forum for reassurance. Not to be called a hypochondriac! I, myself, have experienced a doctor telling me I was "chasing rainbows" and how demeaning that can be! I think, at times, people act as if they are the keeper of the keys. Is it really necessary to be so mean? I hope that people can go away from this forum with the feeling that all of their questions have been answered (to the best of our ability) with a comforting and welcoming experience and the understanding that this, IN NO WAY, takes the place of seeing their doctor(s)!
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Old 05-07-2010, 10:15 PM #15 (permalink)
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Default Re: is this ALS thread

I agree with you with ValRunk... I think it is important to be patient and as kind as possible. I didnt respond on the thread that triggered the outbursts and anger because I didnt want to perpetuate and bring that thread back to the top of the list. It is just too angry.
We are all dealing with demons and some are more real and right now than others. The "do I have ALS" thread is a tough one as how does anyone really answer that question. However, it exists because there is a need and I hope we all try to be kind and not abuse it.
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