Ok, now it clear...

[Clearwater AL]

After reading the new “Sticky" for the DIHALS Forum (last paragraph, first sentence) it has been made somewhat clear that those of us who have been diagnosed with PLS (or any MND other than ALS) should refrain from commenting on that Forum. We are guests.

The top bar above the list of sub-Forums does state this however…

ALS and MND Support Group
(“Our support group is for ALL persons that have been affected by amyotrophic lateral sclerosis and motor neuron disease. This includes people afflicted with motor neuron disease, their friends, families, and loved ones. ALSforums is a community where you can ask questions, discuss concerns, voice your thoughts and experiences.”)

Ok, I somewhat agree with the new “Sticky.” It may be better for PALS and CALS only to answer the questions of those who believe they may have ALS. I would only hope that Moderators have a way of verifying those who are truly PALS and CALS. Most of all CALS.
(Somebody who helps care for an Aunt three times a week for a few hours isn’t really a CAL. But... would not be considered a guest if they put “Caregiver” in their bio.)

Finally, I just wish that the PLS Forum and other MND Forums weren’t below… “Other”, “Rants & Raves”, “Comedy-Humor-Jokes” and “After 5”. Kinda puts us in our place I guess. 

 

[Nikki J]

I do not consider our PLS members guests nor I believe do any other PALS or CALS. There is not a good name for people with MND (PMND just does not flow and looks a bit like PTSD if you read it fast)
The point of course is that people who have no connection with ALS other than a morbid fascination and or fear are guests and have no reason to stay here

Anyone who has a constructive comment and experience with MND can comment on DIHALS as long as they remain civil
The PLS people have a decent peer group the rare person who has an MND neither PLS or ALS is not so lucky here and you will see that I have previously remarked as recently as this week on the thread about new stickies that those people are welcome to post in the AlS section as are PLS people if they wish.

The concept of verifying diagnosis or caretaker status is of course not feasible here.

 

[skipper66]

I am strongly getting the impression that I am not really welcome on the forum because I don't physically do the caretaking of my dad. I guess my feelings having a dad with a terminal illness doesn't matter to some people. I am 48 years old and saw my father almost everyday of my life until this damn disease hit him two years ago and he now had to move thousand of miles away. Lost my mom 17 years ago to terminal colon cancer as well. My dad lives in the same town as my siblings. No, I don't need any support. I'm just plain fine.

 

[skipper66]

Oh by the way. I did respond to posts on the DIHALS threads. Not because I know much about ALS. I definitely don't. But, I sure know what anxiety and stress is capable of doing to one's mind and body. So, I addressed the posts that resembled them.

 

[cheerleader]

Oh Clearwater and Skipper, I think you misunderstood. The title of the sticky was aimed at people questioning "do I have ALS?" Since that is NOT your purpose for being on the forum, it was not meant to offend you or keep you off. It was meant to discourage the people asking for a diagnosis, and the ALS wannabes. Don't think anyone wants you off, as you have an investment in this and a need for support from those of us traveling the same road! Sure you will hear from others here who agree this is YOUR safe place to unload, question, contribute. Hugs to you both. Donna

 

[Schmidhogan]

From reading this thread and the sticky I think there's a little overreaction going on here. Alex

 

[kevinw]

Wow...all I can say after reading the last paragraph of that "sticky" is that is one of the most horrible, insensitive, rude things I have ever read on this website. I guess I can see the point, I sometimes get tired of reading about someone that is just speaking from fear, but we all started somewhere. To say when your questions are answered it's time to leave is a little rough.

 

[dalvin]

Wow...all I can say after reading the last paragraph of that "sticky" is that is one of the most horrible, insensitive, rude things I have ever read on this website. I guess I can see the point, I sometimes get tired of reading about someone that is just speaking from fear, but we all started somewhere. To say when your questions are answered it's time to leave is a little rough.

Needed though as we've had a few that after being told it doesn't sound like ALS and by their docs that they don't have it or any other mnd, want to stick around and give out false info to other dihals that confuses the issues for them. A couple have even come up on the other sub forums to hand out false info

 

[Nikki J]

This sticky is directed at the dihals wannabes some of whom decide that they can hang out here indefinitely. They even have said this is for the undiagnosed so I don't have MND but I should stay. . Not exactly dihals is a way station people come ask questions get advice and if the advice leads them elsewhere they should go If they or the person they represent have MND then we welcome them that is the way dihals has always been. I have edited the sentence you find offensive to make it clear they are asked to leave if it turns out they don't have MND which is perfectly reasonable. They don't belong here any more and they consume resources ( PALS ( used loosely does not even the VA say PLS is part of the ALS continuum?) energy)that are pretty limited people who read on DIHALS regularly must know this. If you are smart enough to stay away you may not but believe me it is an ongoing problem

 

[kevinw]

Yeah, I guess...I joined in 2008 and have seen a lot of good people come and go. Some for unfortunate reasons and others for the reasons you are speaking of, probably just fed up with people that just want to hear they have a problem. I suppose it had to be said in that note for those that just won't listen. I honestly just breezed through the note after reading this thread, then focused on the last paragraph. It was just my quick, first reaction that I posted...I truly understand the need to be forceful to get through to some people. Enough said on the subject...I hope all are doing well, take care.

 

[Tokahfang]

Sheesh, if I can be a moderator with a UMND that is not even exactly PLS, obviously we are welcome. Thank you for the edit, Nikki.

Making a better acronym than PALS for people with any MND would be a good project, though, preferably something pronounceable! With how many more PALS there are then people with other MND's, it might be hard to get traction, though...

 

[pecas]

You know, I think if the whole forum were visible only to registrants, most of these folks would stop coming.

 

[Clearwater AL]

The first sentence, the last paragraph of the new DIHALS sticky says,

("ALSForums.com is a site for PALS (people with ALS) and CALS (caregivers for someone who has or has passed away from ALS). If you do not fit in one of these categories, then you are only a guest here.")

Ok, I may have misunderstood what I thought I read, or it's intent. Oooops.

 

[Clearwater AL]

The above went to Moderation.

 

[Kosmoskatten]

Since the sticky is in the DIHALS-section, it is also aimed at people coming to this forum to ask questions. I believe that the term guest is used for posters to understand that when their questions have been answered, they should not linger on the forum unless they have a clear MND issue.

As we all know, the DIHALS-forum is overflowing with hypochondria, anxiety and issues not at all related to MND. So albeit a bit harsh, the sticky need to make clear, that this is not a forum to discuss other issues than MND, or anxiety issues. The sticky is not aimed at regular members of the forum.

I am very active in the DIHALS section, and do not have ALS.