Who has been here a long while?

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Danijela

Senior member
Joined
Dec 3, 2008
Messages
667
Reason
PALS
Diagnosis
11/2008
Country
UK
State
UK
City
Bolton
Dear All

I don't post much these days, but all are in my thoughts and I read whenever I get a chance. Things are getting even harder for us, but it is warmer and all is green, so life is still worth living.

Just wondering who is still here, from the 'old guard'. I joined in 2008....

Dani
 
Hi Dani,

I was thinking of you just yesterday. I'm sorry to hear things are worse. I suppose the saving grace is that your son has his dad a little longer.

The old guard is still kicking around from time to time.

Good to hear from you.
 
Hi dani,so sorry to hear how much harder it is for you.
I posted on the main forum about friday world awareness day....did you see it and the link?
I am an oldie ,joined jan 08 after lurking for a few months before.
Keep meaning to contact Rose and Hopingforcure as they have not been on in months.
keeping you,hubby and baby boy in my thoughts and prayers.
 
Hi Dani, I have been here since 2009. Are you on Face Book? A lot of the CALS who have left here are still active there. I was just looking at my friends list the other day, and so many never come here any more. HUGS, Lori
 
Hi Dani--we are still hanging around!
 
@Sadiemae:

Quoting the last part of your post: "I was just looking at my friends list the other day, and so many never come here any more".

May I ask what has happened that they are no longer coming back here?


NH
 
@Nighthawk, A majority of CALS who are no longer here because there PALS have died. :( Quite a few left because of a lack of a moderator after Richard and Al died. Also, when this forum was first started, FACE BOOK was not around. There are several closed, and therefore more private groups available now. I belong to a closed CAREGIVERS group on there that has at least a hundred active members. This forum used to be a lot more active. It was not uncommon to have a hundred or more members online at all times.
 
@Nighthawk, A majority of CALS who are no longer here because there PALS have died. :( Quite a few left because of a lack of a moderator after Richard and Al died. Also, when this forum was first started, FACE BOOK was not around. There are several closed, and therefore more private groups available now. I belong to a closed CAREGIVERS group on there that has at least a hundred active members. This forum used to be a lot more active. It was not uncommon to have a hundred or more members online at all times.
What is the Facebook site called? The one I got into seems to not have been active since at least January 2013.
 
Larry,a lot of the groups are closed groups that you need an invite to get into. DJ you have a lot if contacts on FB that have ALS? 90% of my friends (over 400) are PALS or CALS.
 
Hi Dani,

I'm still here every day. Annie joined in Feb 2008, and I joined in 2011 when she could no longer post.

I wish you much grace and peace.
 
Hi Dani

We are still here too, like you looking in but not really posting. Sorry its getting harder for you, anything in particular or just generally, I know Mick is struglling a little more with his chest these days, but thought maybe the warm weather hasn't helped him. Hope Laurence is on a more even keel soon. xx A
 
Hi Dani, i am new here but i still wanted to wish you lots of strength and courage.

On another note re fb groups, the one big advantage for me here on this forum is that we can read through past post and it is nicely organized. On fb, it is a pain to scroll dwn and sometimes posts are repetitive. At least here the info is accessible. Fb does offer camaraderie but the forum does too.
 
Hi Dani

I am still around. On NIV 24/7 with no
peg. Eating and breathing getting difficult but no regrets. Nine years let me see my children grow up. Using dynavox to write but can still whisper. Looks like my swallowing and breathing will fail about the same time. Best wishes, John
 
Hi Dani,

I rarely post but have read and followed many friends here for years. Jim was Dx in '09 and we're still thankful when forum friends post what they're up to and how things are going. Although we have never spoken I care about you and your family. Sorry to hear things are getting harder. Hugs, Marie
 
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