What's up with the ASAP forum? Where is everybody?

[reedy]

I keep checking in to ASAP, as I have done off and on for years (since my diagnosis in 2007). Its gone from being a very active forum to being very, very quiet, with only a few posts now and then. Where did everybody go?

[gunflint]

I think facebook is taking over social communications and on-line groups. It's too bad as I have never been on it nor will I ever go on it.

[syrinx48]

Hi Reedy and Gunflint,

I really miss the others too! Sometimes I want to ask something, or want to respond, but who is reading it? I feel lonely, and I think more of the the golden oldies...... What gunflint says is probably true. Most of the others are on Facebook. Not me!

Annemarie

[reedy]

Hi there pals! (waves!)

Good posts recently. There may not be hundreds of us at the mo', but we've got useful things to say.

I've got an FB account, and I read stuff regularly on FB, but its not a place I want to have info about my medical interests accessible to everyone I'm in a casual chatting relationship with. It see FB as a place for politics, cool photos, jokes and (sigh) kitty kats. I'm sure there is some obscure way you can make some links private, others not, but I'd really not like to accidentally have someone start going on about our shared problem on a location that can be read by my work colleagues, neighbours, etc. I like anonymity of a forum (although I'm quite happy to make personal contact as well).

I also like the organisation and moderation in a forum. A continuous timeline of communication, while mirroring the real world (meatspace!), is a way to increase life's jumble, not decrease it.

So keep up the forum, folks!

[hotsauceman]

I had a facebook acct. but closed it, too much junk. I prefer subject specific conversation.
Wish everyone, wellness.

[Peachdejour]

I'm on the facebook group and this group. The facebook group is private just like this is by the way. Only members can see the posts. I do like this too. It feels more secure.

[sarahb]

Hi from NZ. I still pop in here plus I am in two groups on facebook. It's good to catch up with familiar faces on here

[momsangel]

I have often wondered the same, when I first joined it was very active here, but perhaps facebook as taken most away

[SMLady]

facebook has pretty much taken over what little time I can spend on the computer.

[June]

I agree with Reedy--I don't want my medical info on FB. And I do miss the discussions we used to have. ASAP hasn't been the same in the last year or so. Glad to see you guys are here!

[wendi]

I only use FB for my business. I come here from time to time, but not as much as I used to. I do try and check in and will try and be more active if I can. You can always reach out to me if you need me.

Wendi

[marymac]

Hi Ho Friends

I write on here only about SM, never on FB. . . we all know what we mean to say on here and can understand what we're talking about here. I've only lost friends by telling them on FB: they don't want to hear it and I don't want to tell; not ashamed, just not comfortable with their judgements, opinions or comments when they know not of what they speak. At least here we can spit it out and get understanding answers or replies back. I wish we could all get together besides at a conference, just to know the faces behind the names, as we so often hide (with good reason, eh???) I trust my friends on here, and have no problem discussing meds, developments or opinions and feel safe asking questions. Also we can discuss the effects on our relationships here without fear of retribution, or hurt spouses, kids, etc. Nobody ever asks how I'm doing on FB. . . only here because we understand what the other is going thru. I will most certainly post more now that I know it's not just me. I used to come on daily, then it just seemed to dwindle so would only come on with questions when there was a problem. . . I'll be back regularly with pleasure and hope you will be too. I felt so lonely through the holidays, it was pathetic. Doing for others usually eliminates that but those days are fewer and shorter, by far. Lucky I can get thru my own day without help of other people. . . they seem to forget, especially if we still look good. Takes me a damn hour to paint on a happy face now in the morning, but it's worth it to me because people still treat me like I'm "normal" when I go out, which is also much less often. Used to take 8 minutes but when the hands went, whole new story. People comment on my hair because I've colored the gray and it has grown long because I can't stand the salon chairs: and tell me I look younger, HA. If they only knew. . . it's all a facade. If I don't paint the face on, I won't go out because I get the "mortified" look. Makeup is so fake and I used to think the time applying it was a waste but now I realize how much nicer people treat me, so I do the dance every day. As for the hair, it's wash and wear: no curlers, no irons, zip. If I can wad it up in a twist, it looks dignified and thus the compliments. People are SO very shallow. But I do it because I want to be treated decently, not pathetically. Too bad that's what it takes. Next time I see my NS, think I'll go "bare" so he understands it is worse, not better: he actually told me how much better I look, UGH. So FAKE and so SHALLOW. What a joke. Anyway, I'll be back to chat more often for sure. I miss you guys!
Love and gentle hugs
Mary Mac

[marymac]

Hey, what about a dating site for SMers, HA! Wouldn't that be a hoot??? Could be fun, even if it stayed on line. At least we could provide each other sympathy and understanding. Don't know about you, but my husband doesn't want to hear ANYTHING anymore, sick of it. My kids no longer ask either, they just come around less often. I think it'd be fun: SPINERS MINDERS, or something funny like that. . just an entertaining thought! We could emotionally adopt each other, hahaha. xoxo.

[June]

Hi Mary Mac,

Ditto to the Nth degree! I agree completely, in fact I had the "you look good" experience again just a few days ago...had my hair (dyed) washed and blow-dried, had put on make-up, and gone to a doctor's appointment. Mistake. The doctor said how much better I looked and assumed the new med must be working. (It wasn't, and I had quit taking it.) We got things straightened out, but good grief!

Yes, it is a lonely life. I rarely go out anymore. My husband has Parkinson's and emphysema, and fortunately he grasps the SM concept. But he spends most of his time on his computer, and I spend my time reading, watching TV, computer, whatever. But at least he is here, and that is comforting.

I think you are on to something with the adoption idea. SM'ers could partner up for more individual and specific support, via the internet, as needed. I hope you follow up. I'm on board.

[syrinx48]

Hi,
It is so true what you both have written! I am also such a person who try to look good when going to a doctors appointment. That is how I have been raised....
As for the husband and family, they get so used to it. When my husband calls me he always asks how I am doing. Not that he is really interested, it is more or less a standard opening word for a conversation. I once asked him if he really was that interested, because he knows how I am doing.....

But count me in, I am here also very often.

Annemarie