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Joined: 3/14/2012
Posts: 140
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Hi all. I have set up a secret group on Facebook which means that
it's existence, who is in the group and ALL POSTS in the group can only
be seen by people I add to the group. I set it up for those of us that
are still able to communicate and interact and have a desire to talk to
others diagnosed with any type of dementia including Alzheimer's and
FTD. I am diagnosed with Atypical Alzheimer's Disease and do not have a
great deal of short term memory issues yet, more of issues with
executive function than anything. There is at least one other support
group that I am aware of on Facebook that is a secret group but I wanted
to start one that I could promote here and add anyone diagnosed from
this site to the group. So the only conditions for being added to the
group are being diagnosed with any type of dementia, still able and
willing to communicate and have a Facebook account. If you are
interested PLEASE send me a message or post a comment so I can get a
hold of you. I will have to send you a friend request on Facebook and
then as soon as you approve that I can add you to the group. It will
show you posts to the group on your wall but DO NOT worry, no one else
except members of the group can see those posts or will know you are a
member of the group! I also do not post a great deal about being
diagnosed on Facebook publicly so your privacy is assured and important
to me! Thanks and I hope to hear from those of you interested!!
John
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Hi John,
I'm not sure how to send my husbands facebook information to you. I'm off to read the how-to's for messages. Thanks, G
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Joined: 12/15/2011
Posts: 18689
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GBTrotter, your husband is welcome to join us on our two boards, "I have AD" and "Younger Onset AD". We are an open, supportive community via the message boards.
We invite him to join us. We would like to meet him and get to know him.
Iris L.
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Joined: 11/29/2011
Posts: 514
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G, as Iris said, we would welcome the opportunity to have your DH (dear hubby) communicate here with us on the two AD Forums!
Most of the posters in these two forums have a diagnosis of AD, other dementia, or cognitive challenges. Thankfully, with early diagnosis, we can talk to others with like experiences.
I do hope your DH will join us here.
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Joined: 12/5/2011
Posts: 127
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Hey John, guess its not a secret anymore, huh? LOL!!
Tracy
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Lol Tracey, guess not
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GBTrotter wrote:Hi John,
I'm not sure how to send my husbands facebook information to you. I'm off to read the how-to's for messages. Thanks, G
While reading the spouse's boards, I ran across a post that gave specific instructions on how to send a message to a connection. A little detailed, but it worked. Thanks,
GB
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Iris and Geegee,
I've set up an email account and have written down everything for him. He just says not interested at this time. He might not be at this time, politics are consuming his time it seems. He'll ask me, and I'll have it ready when he is. I'm still trying to find a group here in Jacksonville for him.
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Joined: 8/19/2012
Posts: 2333
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My husband was told only 4 weeks ago. he is 63yrs old... Just started on Meds. I would like to get him on the facebook...this site is too much for him to handle..
Bridget.. I will send you a message..
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Joined: 8/19/2012
Posts: 2333
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John, I just invited you.. have to wait for you to accept so I can message you..
thanks
Bridget.. Yes Rich would like to be on Your Facebook page..
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Joined: 3/14/2012
Posts: 140
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Sorry I did not see your messages sooner but alas try as I might I forget to check the forum regularly. Just one of the reasons I wanted to do the Facebook group but I also agree that it can be overwhelming to many with a forum on where to go, the different threads and so on. I get confused once in a while and I have always been a computer geek and participated in many forums in the past. I never wanted to take anything away from this great resource that my favorite non-profit created but rather wanted to give another option to folks that were interested. I have sent you a private message in reply to yours.
GBTrotter wrote:Hi John,
I'm not sure how to send my husbands facebook information to you. I'm off to read the how-to's for messages. Thanks, G
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Joined: 8/19/2012
Posts: 2333
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John50, this is BIDDIE12...i WILL check for a message from you..I'm on the fourm..but my husband who has AZ cannot handle all this "he would like to do your Facebook site."...so if you accept him on your group it should be good. I just need the group name so I can get him on there... I did not get a message from you yet??
Bridget..
This post was edited by the ALZConnected Moderator on 8.30.12.
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Joined: 3/14/2012
Posts: 140
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Hi, check your inbox, I sent you a private message. Thanks.
BIDDIE12 wrote: John50, this is BIDDIE12...i WILL check for a message from you..I'm on the fourm..but my husband who has AZ cannot handle all this "he would like to do your Facebook site."...so if you accept him on your group it should be good. I just need the group name so I can get him on there... I did not get a message from you yet??
Bridget..
This post was edited by the ALZConnected Moderator on 8.30.12.
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Joined: 8/19/2012
Posts: 2333
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John, I wrote you a note on facebook. I can get on the site from my facebook wall "Bridget" but when we bring up my husbands facebook wall so he can get on to post "Richard"..we can't bring the the site up "early Alzheimer's" why is that. he was posting yesterday under my avatar...help us out..Bridget
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Joined: 6/21/2012
Posts: 47
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Hi John,
I would love to join your privite Facebook page. I have early-stage alzhiemer's dementia. I am also a member of the national Alzhximer's Association Early-Stage Advisory group. My facebook page is www.Facebook.com/kayefox
Thanks a bunch,
Pastor Kaye
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Joined: 12/15/2011
Posts: 4122
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@ Kaye i used your FB link but it did not work. ugh,
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Joined: 12/15/2011
Posts: 4122
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Hi John50 what is the name of your facebook group. when i type in alzheimer's etc etc several groups pop up and i want yours...thanks
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Joined: 10/19/2012
Posts: 1
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How do I send you a message. I'm on facebook and wanting to join you group. I'm at the beginning of this long trip and looking for all the support I can get. I'm Janice Aubuchon. So what information do you need to start.
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Joined: 12/15/2011
Posts: 4122
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How come I am not getting support. I have posted that I cannot join John's secret facebook because i do not know the name
and i post that the link below or FB page by kaye isn't working
www.Facebook.com/kayefox
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Joined: 12/18/2011
Posts: 3097
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Bela, John has dementia and he has explained before that he forgets to come here. He probably hasn't even seen your message.
Also, as I read his original post, his group is only for those people who have been diagnosed with dementia, not for caregivers or relatives of those people.
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Joined: 9/29/2012
Posts: 50
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John50
I would LOVE to join your Facebook support group, if it still exists. I think it is a GREAT idea. MANY people, including myself, have difficulty with the discussion board.
I do hope you still have it going.
Struggling
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Joined: 9/29/2012
Posts: 50
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John50
Do you still have your facebook group? If so, I would like to join. Give me detailed instructions please
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Joined: 11/29/2011
Posts: 7027
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Hi
Struggling,
I'm so sorry to hear that you are having problems with this board.
Can you be more specific? I do know that we PV's as well as the
Administration will help in any way possible.
If you are able to make a phone call while you are at the computer, please call the help line 1-800-272-3900 the next time and they will walk you through.
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Joined: 12/31/2012
Posts: 2
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Hello my name is Peggy I was diangnoised march 2010 with early on set A Z I was forsced to take early retirement at 48 years old I am 51 years old there isnt a support group in weston wva i would love to join this group God Bless.
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Joined: 12/6/2011
Posts: 3326
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Hi, Peggy! Welcome to our discussion board. Would love to hear more about your journey.
Here's how you can get help in West Virginia. They have 3 regional offices:
You can contact us in many ways:
Charleston
West Virginia
1601 2nd Avenue
Charleston, WV 25387
304.343.2717
Morgantown
Northern Regional Office
1299 Pineview Drive, Suite 3
Morgantown, WV 26505
304.599.1159
Parkersburg
Mid-Ohio Valley Regional Office
1218 Market Street
Parkersburg, WV 26101
304.865.6775
24-hour Helpline:
800-272-3900
Web:
alz.org/wv
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Joined: 3/14/2012
Posts: 140
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Hi wvgranny, I have you in my connections so I just sent you a private message concerning the group this thread was started about. It is not meant to compete with or take away from this forum but there is a group of us diagnosed that really like keeping in touch with Facebook since we are on that so much.
Take care,
John
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Joined: 12/15/2011
Posts: 18689
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Welcome to our online support group, Peggy. I hope you will be able to make contact with the Alzheimer's Association through the resources Myriam has listed. You can ask about local support groups. Your Early Stage Coordinator can help you find local resources.
Please feel free to start a new thread to introduce yourself. You are welcome to come back often to ask questions and just to vent.
Iris L.
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Joined: 9/19/2012
Posts: 8
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Hi John. Add me please.
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Joined: 12/31/2012
Posts: 2
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Thanks alot
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Joined: 3/14/2012
Posts: 140
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struggling, I sent you an invitation to join my network on here so I can send you a private message. I will tell you there how to connect with us on FB if you are still interested unless you are one that already has, so hard to keep up with names here versus FB names. I apologize bela, I did not see your post until now but if I am correct you are the family member of someone diagnosed? The group I started is just for diagnosed people to keep in touch and express common experiences because we are on Facebook a lot. There are other groups on there such as memory people that are open to anyone that cares about dementia, I would suggest that group perhaps if you want to add to participating here. Thanks!
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Joined: 9/29/2012
Posts: 50
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Thanks John50 for your message, but I am trying to simplify my correspondence rather than add another venue. I'm not much of a facebooker anyway.
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Joined: 1/14/2013
Posts: 81
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I.m still having trouble with this message board let alone try some thing new.
Do you know why the recent posts are at the end of the page? That's ok but I notice in the caregiver forms things seem more organized. But I messed up a response the other day that went to the wrong forum. Thank Iris for making me aware.
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Joined: 12/15/2011
Posts: 18689
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Hi, Gregg. I'm sorry you are having trouble with the message boards. The threads have always had the most recent posts at the end. This is the same as on the caregiver boards.
If you go to the "I Have Alzheimer's" board, you can click on the tab "Add Topic" at the top right. Then you can begin your own thread.
Please keep posting. We want to hear from you.
Iris L.
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Joined: 11/29/2011
Posts: 7027
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Gregg, if you're still having problems, with your computer open to the alzconnected page, call the help line: 1-800-272-3900 and have someone walk you through your problem to the solution.
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Joined: 1/14/2013
Posts: 81
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thanks for you help I think I'm getting better. We'll see what happens tomorrow.
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