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Nikki J

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Joined
Mar 22, 2012
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16,381
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Hi all
This was in another thread but want to be sure everyone sees this.

As most of you know the site was down for over a day. This happens rarely but when it does it is stressful for many and there is always a risk of someone being in crisis and REALLY needing us

As an alternate method of communication I have made a secret facebook group. It is to be used if needed during an outage it is not intended to treplace the forum at all. For those not familar with secret groups. No one who is not in the group can find it or see the membership. Posts are only visible to members ( so if you posted in the group you might see it on your newsfeed but no one who is not a group member will) so you do not need to worry about people in your real life knowing anything about it

I ask that you use a face book id specifically yours ( not a spouse for example) as not only could that person read your posts but also other members'. I added a few people who happen to be my FB friends. Anyone who is a member of the group can add you pending admin approval ( admins Jim and me could use another). You can pm me your fb id ( name and perhaps avatar description) I have not yet figured out how to add people who are yet FB friends so you might get a friend request. Hoping people will sign up
 
Those who attempted to log in while the ALSFORUMS were down, know that not being able to connect can cause one of those "sinking" feelings in the pit of the stomach. You don't know if it is you, the site itself or when/if the forums will come back online. While some of us are also connected externally, (i.e. Facebook or via email), most only have the forum for access to each other. Nikki has created a place within Facebook that can be used for those times when you find yourself without access to the forum and you're not sure why. You can pop in and ask if anyone else is having difficulties. It also gives us a place to communicate should there be an extended period of "site-wide down time". As Nikki has already mentioned, it is not intended to replace the forum... but only to provide an alternate location for access to forum members when the forums are down.

Please feel free to PM either Nikki or myself (here, within the forums) for an addition to the group... or you can send me a Facebook Friend Request (or Message me) from within Facebook. You can directly access my information on Facebook by doing a People Search for "jim.bird.77". Although there isn't much to do beyond being accessible to those requesting group access, we'd love to have at least one more person available as a Facebook Group Admin. And if you happen to be in a time zone other than Nikki and me (North America), that would be great, too.

Regardless of what you elect to do with the Alternate Access group, thank you for your participation within these forums. For every person we get to know because of the time you've taken to post your thoughts, there are scores of others that we don't know... but who still find help, here, in the forums. I'm reminded of a song from a few yesterdays ago by Sister Sledge - "We Are Family"...

Jim
 
Hello-
I am either forum illiterate, or have not posted enough or paid a membership fee or something, but I can't figure out how to pm someone here. Jim, I also searched your name on FB and can not find it under the jim.bird.77 id. I apologize for being a bit of a hassle, but if you could let me know some other way
Thanks again
 
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You don't have enough posts to pm yet. No worries. I will pm you
 
I honestly didn't recognize how much I depend on everyone on this forum until I couldn't access it -- and I'm a newbie, so I can imagine how more isolating it would be to someone who has been on this forum for much longer. Thanks a million for your foresight, Nikki. It is very kind of you to recognize everyone's needs and take the time to organize this. You're stellar.
 
Thank you! And thanks for the edit. Much appreciated.
I agree with LifeEnthusiast- I didn't realize what a touchstone this forum was till I couldn't access it for two days.
Thamks again!
 
I also searched your name on FB and can not find it under the jim.bird.77 id.

Curiously, FB doesn't find jim.bird.77, but if you simply google it, Jim's page is the first result right on top.
 
Thanks we are all in this together. If you are friending Jim and it is not obvious who you are here by user name could you pm him on the forum and tell him who you are. We are trying to be really careful about membership especially as a lot of us are using real names over there
 
My page has a "Someone I Love Is Waiting" picture related to ALS. Sorry the search did not work (it worked for me... but I'm already my own best friend!).

Jim
 
Hey Jim, maybe that young, brown-haired guy fooled 'em!
 
Thanks Nikki and Jim for looking out for us all!
 
Thanks Nikki and Jim for looking out for us all!​

Ditto that! You two are awesome!
 
Great idea, I had a heap of members here message me on fb that day asking if the forum was down :)
 
Nikki, would you pm me about this? Not sure if I should wait until my clinic eval, or sign up.
 
Affected has also agreed to be an admin
Thanks
 
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