Privacy for PALS

[Atsugi]

Sometimes I see CALS commenting in the PALS forum.

I always thought that the forum called "People with ALS - PALS" was a place where PALS could speak to each other without CALS being part of the conversation. I know the "CALS" forum sometimes contains posts that are really meant only for CALS to read.

Maybe it's just me. Have the rules changed? Was it never really an unwritten rule? I try to stay out of the PALS forum, to let them have their privacy. Seems like a good idea.

 

[Nikki J]

We have discussed this before. For PALS and CALS ( as opposed to DIHALS) there are not a lot of hard and fast rules.

In general it is preferable if:

People post in General discussion if they want input from everyone.

PALS should not start threads in the CALS section and vice versa except in the rare occasion that they are specifically seeking input from the other half.

Responding on a thread is more of a gray area. Mostly I agree that if someone posts on the PALS section they are seeking responses from PALS and ditto for CALS. General is where we meet mostly. Unless a thread says CALS only or PALS only in the title it is not forbidden though. People should think twice before deciding to post.

If a discussion is likely to be painful for PALS then it definitely needs to go in the CALS section and will be moved at the discretion of the moderators. PALS read the CALS section at their own risk.

Another issue is using the specialized subforums as they are intended. Research news should be just that. Real research not speculation. Drug trials ditto.

Most everyone posts with good intentions.

And I get to post everywhere because I am a past CALS too! Wink wink!

ETA
Please try not to quote. It lengthens the thread and makes it harder for PALS who use eyegaze and other alternative navigation methods.

PLEASE use paragraphs. Blocks of text are difficult for all and again especially for PALS. It is easy to lose your place when scrolling a massive block of text.

Our regular members are most really good at both of these- this is mostly for new people who happen upon this thread

 

[Nikki J]

Oh, and try not to hijack another person’s thread. Better to start your own if you want advice on a situation even if it is similar to the original post

 

[KarenNWendyn]

I think these rules are good general guidelines. I do like reading the CALS forum because it gives me a good perspective on what they go through, which hopefully will help me be more sympathetic to my own CALS. If a thread were to read “CALS only”, then I would try to respect that.

 

[affected]

I'm not sure how that equates to privacy as this is an open forum searched by google?

I would be horrified if I were to read a thread and have input and then think oh no it was posted by a PALS so I am not allowed to reply.

If they ask specifically for PALS only then I do respect that of course.

I'm not going to hijack to discuss hijacking however :lol:

 

[ShiftKicker]

My thoughts are the same. As long as whoever is replying to a post is aware of whether the original poster is CALS or PALS, where the post has been made, and responds accordingly. Sometimes a CALS or PALS has good insight on issues being discussed and can give answers based on their perspective that adds to the discussion. Sometimes it's not always clear if someone has posted with this awareness.

I think it's important to ask everyone to be aware of where the posts are made and whether the original poster is PALS or CALS. Same with some of the other subforums- while the PLS subforum is quite quiet currently, it has benefited from input from people who don't have PLS but have experience with whatever issue is being discussed.

 

[mpnatx]

The CALS input has been very valuable to me. Especially since I'm my main caregiver. They have witnessed this disease and gone through the trials and tribulations that PALS and CALS endure together. Their experiences and courage have truly been a blessing. I'm grateful for their input wherever it may be found.
I do tend to stay away from the CALS section because I can't stand to see their suffering.
Thank you CALS and PALS!

 

[Nikki J]

Fiona makes a good point in bringing up the PLS subforum. People with PLS clearly belong here and are valued and equal members. Many of the issues are the same for both those with PLS and ALS. It is important to remember the differences though. I have seen replies made by PALS who do not seem to realize the differences in progression and recommendations between ALS and PLS.

Again it is mostly important to consider context and post thoughtfully

 

[KimT]

I'm my own CALS at this point. I've read a lot of CALS posts because, at some point, I'll need to train someone to help me live and let me die. I have posted in CALS threads but it was mostly encouragement and telling them how great they were and how impressed I am with them.

I'll admit I've read things that scare me but the things I've read that are helpful far outweigh the scares. I also got to "know" some of the CALS, especially Tillie, when I wrote the ALS Awareness paper. Some of the CALS from my local support group call me for information and suggestions.

I guess I just believe we're all in this nightmare together and we all have different situations, challenges, hopes, and dreams.

 

[wishmobbing]

Mike, thank you for the discussion, Nikki for a good guideline and all the others, too.
I'm so grateful to be part of this community. The general tone is so warm and open-minded.

I almost exclusively use the forum via the "new posts" button, so I overlook easily in which subforum it was posted.
It's pure genius to see rightaway next to each post who wrote it, so you can put the perspective in perspective. I miss that quick context in the German forum I still sometimes look at.

I enjoy getting different perspectives on the same topic, the exchange between CALS, PALS and anyone doubling their roles. I often tell my CALS stories and info I read here, I sometimes (ask his okay to) relay his stories here. I'm thankful for the openess here, I wouldn't mind a PALS ranting about his or her caregiver once in a while. (Don't think that I read something like that yet.)

The only thread so far where I make a try of not butting in is the PALS roll-call. I sneak a peek sometimes and am glad to read what people are up to. Like in the CALS roll-call it's a good way to get a feel for the members who don't have to join every conversation or maybe have to household with their energy and just give the occasional update.

Kim, you're so right. We're all in this together. Noone has to deal with this alone. By sharing your life here, you've become family to so many of us.

 

[Chincoteaguer]

Sometimes I see CALS commenting in the PALS forum.

I always thought that the forum called "People with ALS - PALS" was a place where PALS could speak to each other without CALS being part of the conversation. I know the "CALS" forum sometimes contains posts that are really meant only for CALS to read.

Maybe it's just me. Have the rules changed? Was it never really an unwritten rule? I try to stay out of the PALS forum, to let them have their privacy. Seems like a good idea.

this is one of those dumb questions but can you tell me how I know if I am in a PALS or a CALS forum.

 

[Nikki J]

If you use the new posts link as many of us do when you look at the thread title you can also see the subforum title. If you forget to look if you scroll to the top of the tread page you are on you will see just to the right of your user name the subforum in blue.

Please Larry as noted in my post above don’t use the quote function. It adds to the difficulty of PALS because the longer the thread the harder / longer it is to scroll.

 

[Firefighter58]

I agree one hundred percent with Mike. Many of the older member have stopped posting on this site because they are sick and tired of the woe is me, poor me I am going to die. We are all going to die, every one on this earth is going to die, so be it. I still text with many members but we do it off this site for that reason, gone are the days when we used to meet new members with gladness and humour and text each other the same way, now it is all doom and gloom and no fun to be here.

The last time I posted here was when a person wrote in and posted a statement, so I asked them what was thier point. They had not asked for advise, they had not asked for an opinion, they had just made a statement.. I got a reprimand from a moderator for asking the question. The friendliness and fun in gone from this site.

Many of the CALS make the statement they know how the Pals feels, that is impossible, they make the statement they know what is best for the Pals
That is only thier opinion, Pals are still people they still think like they did before, they still like thier privacy, they are still functioning human beings
Al

 

[Atsugi]

Thanks for that, Al. I think you're very right, and I need to think a lot about how I can adjust my behavior.

I sometimes wonder if it would be best for the community if I just shuffled off. My posts probably cause more trouble than they solve.

Got a lot of thinking to do. Thanks again.

 

[frankb]

no way, mike, can you shuffle off. you have provided sage advice, specially veteran related info, which has been indispensable to so many of us.

back to the pals/cals deal. cals have been very helpful answering specific questions from pals since they have had similar experiences as a caregiver. also, many cals write as an extension of their pals who can no longer communicate effectively. just my thoughts.

stay with us, mike. we depend on your wisdom ! !