missing members

[chally]

it's been bugging me that two strong posting members just up and stop! does any one else have thoughts or feelings on this? i am concerned for them are they ok? what's up here? i know we all have our choices to post or not but out of the blue they just up and drop out? i might be paranoid but computers and social media freak me out and it was with great effort for me to join this group and i like it very much but when things happen like this with no reason or explanation i start to question all senses of commitment and reliability. when this happens for me i isolate and that's not good. so please some one say something! if your gone ,fine no problem, just don't leave your friends behind without word,that's not what i was taught in the military, when i sign on you have my 100%. maybe i should just lower my expectations. this bothers me as if you can't tell. thanks for listening chally

 

[Nikki J]

Mark did post somewhere he was having a hard time with recent losses and was not up to posting. It is also the nature of the illness and of this forum that people drift in and out. We have discussed before that perhaps it would be helpful to arrange some back up communication possibly sharing an email address with a couple of members through pm and or instructing family how to post if need be.
There is a place in your profile to share emergency contact info. Has anyone done this? I have looked occasionally and can never find it but it may be there is nothing to see or it may be that only admins can see it not mods.

 

[GregK]

I contacted Sandy regarding Max prior to starting the M&M thread.
He is OK but having a hard time following our recent loses.

 

[Nikki J]

Thanks Greg

 

[chally]

thank you greg and nikki much relieved. chally

 

[Green Queen]

Chally, I often send private messages to people when I don't see them around.
Call me nosy, but I check to see if either M or M has logged on. Utter relief if one has, the knot in my stomach gets bigger if one hasn't. It's amazing how we have all grown to care for each other. As you know, I email a few people as well, and would be lost without you all.
My day will be awesome when I see them both posting again.
You take care Chally, my dear friend, I love that you are honest and forthright and willing to express your concerns.
God bless you always, Janelle xxxxxx

 

[affected]

It is a really hard thing and I worry a lot when people don't post in a while.

I have contacts for quite a lot of members, for PALS often it is a contact that their CALS can access so that if the PALS goes quiet they can contact me.

The offer is very open - send me a pm with your or your CALS email.
Or friend me on fb Katrina Jeffery (there is only one in Australia and I have a koala pic so I'm easy to spot)

I think we also have to realise that this forum is for people suffering a severe illness and at some point/s posting is just so hard when hands become very weak or stop working. Let alone the fatigue and the sorrow

 

[tripete]

This disease sucks! Seeing people pass here is extremely difficult, I try not to read them. I also CANT STAND the DIHALS post. Some of those people seem like they WANT this fricken beast. I go through anger and frustration, to flippant sarcasm, to true thankfulness for each day, -it is a roller coaster that just ends up in exhaustion.

Life is not normal no matter how much we try and pretend.

 

[Green Queen]

Peter, i have to say Ditto that!
Some DIHALS end up staying because they DO have MND. But I do notice they are the ones who are very near to diagnosis anyway. I didn't even think about the internet for this kind of site until March this year, four months after my roller-coaster ride was given a name. And I agree that the roller-coaster stopped being fun when you realise you can't get off.
I don't know how deep your pain is Peter, only you know that. But if you look around you on this roller-coaster, you'll see us all, there with you, all the way.
God bless us all. Janelle x

 

[chally]

thanks again tillie and i will pm you my cals ph# and e-mail asap. chally

 

[Atsugi]

Nikki, I just entered my phone number in the "Emergency Contact Number" field of my profile so you can see if it shows up for the moderators.

Tillie, that's a great thing you're doing. It would be good to keep the CALS contact info just in case they need help and are unable to ask for it.

Having contact as email pen pals seems to be helpful. Sometimes we want to carry on communication outside of the forum.

 

[Nikki J]

Thanks Mike. I can't see anything so it must be admin only

 

[DreamsEnd]

I have been worrying about Max and Mark but was afraid to ask. Thank you for starting this thread so I learned they are still with us. Seeing friends pass is horrible.

And I rarely read the DIHALS posts.

Sherry

 

[affected]

One of the things I love about a forum compared to a fb group is the way things are laid out and grouped.

So I don't go to a few of the forums by choice and it's just so easy to do that.
I also don't read all threads in a forum. EG if one is obviously asking about the medical system there I may stop reading that thread as I know diddly squat about that. Using the forum tools I can read all the threads I need to then mark that forum as read and still easily see when new posts have been made.

No one has any obligation to read any section, thread or post and I love how easy it is to use lots of little tools here to make the forum work for how I want to use it.