Ok...

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Clearwater AL

Extremely helpful member
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Aug 28, 2013
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2,869
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PALS
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12/2018
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US
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NC
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Get Real
Ok... who wants to handle Christopher? I could tear him a new opening but I'm a newbie. Somebody... have at it.
:)
 
I think that it is not worth the effort. I am thinking that he needs help but, we can not force it on him. :)
 
Which one is he? I can't keep everyone straight. LOL
 
Whoops, should listen to Thumper's mother.... LOL
 
Since there has been a propensity of negative remarks about DIHALS peppered in several threads lately, here are my thoughts. I am not posting this to create division or controversy, but merely to reflect another point of view.

If DIHALS are annoying & irritating, don't open or contribute to the threads. Moderators are doing their best to corral the questioners into the appropriate sub forum and merging threads as warranted. Regular users may have noted that several relentless and repetitive DIHALS threads have been closed and in a few cases, the member shut down. ( after a warning or two).

Please keep in mind, these DIHALS people (& guests) do read other threads, including those in which we complain about them... I have been guilty of being unkind as well, but I will try to curtail unsavory posts going forward. If you wish to discuss DIHALS - please do so by way of private messaging.

If we think about it, it's a bit like a PALS reading rants & raves posted by a CALS from time to time... Some of those threads may make a PALS feel bad. Personally, the latter threads don't irritate or annoy me because firstly, I have accepted the irrefutable fact that my husband & family have it far harder than I have. For new PALS, one might imagine just how difficult some of those comments may be to read... Many CALS thread sadden me. Other CALS threads irritate me when repetitive in query and content. BUT, largely, I learn from from the CALS here and I have learned from many of the DIHALS here too. In all honesty, I have also forged friendships with several DIHALS. I believe there is room for everyone here.

My point is - this place is, or ought to be, an inclusive support forum. From understanding MND, to spreading awareness, to diagnosis to in memorium. And everything in between and beyond.

All I'm trying to say is that it can be just as hurtful to a DIHALS to read less than flattering remarks about them, as it is to a PALS reading things about others like them.

Just sayin'.
 
I don't think our beef is with folks questioning if they have ALS, but with the folks who, when seeking advice, do not heed it.

The continuous "development" of symptoms, the doubting of neurologists, the outright begging to be diagnosed.... that is what drives me up the wall.

When compassion is met with obstinance; when reasonableness is met with unreasonableness; when good, solicited, advice is ignored while feeding paranoia; harsh words, sarcasm, etc may be warranted if not necessarily nice.
 
We are here to support. I agree some folks don't listen.

Why let them drive you up the wall? Don't bother with them. Save your energy.

The point is, some real scared person may read the unsavoury comments and then opt not to ask a question for fear of alienating us. People remember negativity more than positivity. Human nature...

A search of our forum by a newbie ( DIHALS, PALS or CALS) may reflect the negativity and send them away... When they need us most.
 
I don't have the words to tell you why I agree and disagree with you. I respect you :) So I'll try

Part of dealing with our diagnosis is often helping out other folks. We try to help and essentially get ignored for our efforts. The responses we have may not be the nicest, but are understandable. We need to vent.

If we don't reach out to others, then we aren't helping anyone. If we aren't helping why be here at all?

If we don't share our frustrations, they are going to fester.

I don't want anything else in my life to fester.

If folks can't / won't see the frustrations for what they are and from where they stem, they probably wouldn't be able to get help here anyway (JMO).
 
I agree with Elaine. When I posted on the DIHALS if I felt they weren't getting the message, I would just tell them there is nothing left to be said and that I would not respond to any more of their posts and then I didn't. I would tell them I would no longer feed their anxiety/fear anymore.
 
Then threads might ought to be closed once someone is told it doesn't sound like ALS.
 
I agree with Elaine & i can't begin to count the number of times I've thought that when reading your posts, Elaine. When i joined the forum, it was before i had a diagnosis. Numerous doctors told me i didn't have it. Some people really do need our support. If it annoys you, it's simple enough not to read the DIHALS.
 
I agree with Elaine. When I posted on the DIHALS if I felt they weren't getting the message, I would just tell them there is nothing left to be said and that I would not respond to any more of their posts and then I didn't. I would tell them I would no longer feed their anxiety/fear anymore.

Since you are not a PALS; you shouldn't have been posting in the DIHALS section. You do not know how it feels to have ALS or how ALS feels in the beginning stages. Not sure what you would have to offer in the DIHALS section, other than to keep yourself entertained.
I have no patience for the posters in the DIHALS so i never go there. it's a simple fix if it is an annoyance.
 
well, this started about Christopher and quickly became philosophically about us, dealing with outsiders, uncertainty, and [our] lives. I lurk with fascination to see where we take this ...
 
I was wrong. (Again.) I started this thread. Humor is my better fitting but that's not what these DIHALS'ers would appreciate either. I will work hard not to go off on these nut jobs... ooops, these fine worried folks who need counseling more than advice from us (that was painful) and I will try hard to just click onto the next subject hoping it is someone with sincere concerns. But, if another L@V#llH011d^Y comes along...
 
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