Facebook groups for CALS?

[GregK]

the attached shows that there are a slew of fb groups including a few for CALS.

some appear to have few members; ALS Caregivers seems to be fairly large.

Do any of you CALS have experience with any of these CALS groups?

 

[gooseberry]

I belong to one but I can't say its very useful. There are several foul mouthed individuals who rant profanity laced books on a regular basis. I basically stay away from it.

 

[Barbie]

I can't remember which I am in, but I prefer this forum. I find it much more helpful and I feel a stronger connection. not a bad group however.

 

[affected]

I'm in 2 of them, one for current and one for afterwards.

I rarely visit or post on either now, but the CALS one I was in when Chris was alive was very needed for me as it is a closed group. So there were things in the first 6 months in particular that I couldn't say here for fear he would stumble into here and read, especially as the FTD was ramping up and I was trying to figure out what was going on. With FTD paranoia this is a real possibility.

There is value to the closed groups, but I've still found this place to be the best all round support.

We also have a fb group for Australian carers and I have one I run for Australian widows, again closed groups. Of course you won't find them unless you use MND as the search instead of ALS

 

[davbo49]

i belong to one group they only have it for the ones with als. don't know why we all are on this together.

im more for this site

 

[MaxEidswick]

>im more for this site

me 2

 

[affected]

lucky bout that Dave and Max as I don't think they would let you join bwahahahaha

That is another thing with the closed groups is that you have to be approved to join so that there are only genuine CALS in there.

Sometimes CALS need somewhere very private to discuss some of the serious issues of coping with this disease ... just sayin

OTOH this place is family to me and is where I stayed, so the value is huge.

 

[Nikki J]

Which is why the PALS group is PALS only Dave. I do think mostly we can learn from each other but there are times when we might be afraid to say something that our carepartners might see for fear of causing pain

 

[davbo49]

Living with ALS ~ For PALS ONLY. this is the only group i ran onto on fb. i try getting on there for some time. after 3 times they let me in.

 

[affected]

exactly Nikki

When CALS are in danger of burning out they need somewhere very safe to vent that they know can't be seen either by their PALS or family or friends.

OTOH I learned so much here by talking to the PALS that have become my heroes.

I don't think you can really have too much support, multiple groups with slightly different reasons for being a member means more support.

We have the small Australian carers group mainly because our health system and MND associations are so different and so we are able to support each other around that more than anything. It's a bit like those who have access to VA compared to those who rely on insurance in the US. We have neither in Australia so it's been really useful to have that resource.

When Chris was here I was also a member of the feeding tube group on fb and many of the open ALS groups. I have cut back on most of the memberships now.

 

[Barbie]

remember that dude that was all PO'd at us because we were nice? he belonged to another forum and came here to tell us off? it makes me laugh remembering. poor guy, he probably had FTD

 

[Nikki J]

If you are referring to the person I think he was found to be not a PALS but was a fraud and the whole thing was a huge hoax that he perpetrated on the other forum for months

 

[affected]

indeed that was a hoax and he didn't last here long at all ...

 

[GregK]

Thnx guys!

 

[davbo49]

so you are saying jane can not see anything i say on that fb group right hmmm