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New Facebook support group for those diagnosed
John50
Posted: Tuesday, August 7, 2012 5:02 PM
Joined: 3/14/2012
Posts: 140


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


GBTrotter
Posted: Thursday, August 23, 2012 12:32 PM

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


Iris L.
Posted: Thursday, August 23, 2012 1:12 PM
Joined: 12/15/2011
Posts: 18357


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.

Geegee
Posted: Thursday, August 23, 2012 2:36 PM
Joined: 11/29/2011
Posts: 514


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.


younghope1
Posted: Saturday, August 25, 2012 5:47 AM
Joined: 12/5/2011
Posts: 127


Hey John, guess its not a secret anymore, huh? LOL!!

 

Tracy


GBTrotter
Posted: Monday, August 27, 2012 2:14 PM

Lol Tracey, guess not

 


GBTrotter
Posted: Monday, August 27, 2012 2:15 PM
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


GBTrotter
Posted: Monday, August 27, 2012 2:17 PM

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.


BIDDIE12
Posted: Monday, August 27, 2012 4:43 PM
Joined: 8/19/2012
Posts: 2333


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..


BIDDIE12
Posted: Monday, August 27, 2012 5:24 PM
Joined: 8/19/2012
Posts: 2333


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..


John50
Posted: Monday, August 27, 2012 5:55 PM
Joined: 3/14/2012
Posts: 140


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



BIDDIE12
Posted: Thursday, August 30, 2012 4:23 PM
Joined: 8/19/2012
Posts: 2333


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.


John50
Posted: Thursday, August 30, 2012 4:53 PM
Joined: 3/14/2012
Posts: 140


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. 


BIDDIE12
Posted: Sunday, September 16, 2012 8:39 PM
Joined: 8/19/2012
Posts: 2333


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
Kaye
Posted: Wednesday, September 19, 2012 8:24 PM
Joined: 6/21/2012
Posts: 47


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


bela
Posted: Wednesday, September 26, 2012 3:54 AM
Joined: 12/15/2011
Posts: 4122


@ Kaye   i used your FB link but it did not work.  ugh,
bela
Posted: Thursday, October 18, 2012 2:26 PM
Joined: 12/15/2011
Posts: 4122


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
ainsley's nana
Posted: Friday, October 19, 2012 6:42 PM
Joined: 10/19/2012
Posts: 1


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.
bela
Posted: Monday, October 22, 2012 7:59 PM
Joined: 12/15/2011
Posts: 4122


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


dayn2nite
Posted: Wednesday, October 24, 2012 12:01 AM
Joined: 12/18/2011
Posts: 3097


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.


struggling
Posted: Thursday, November 29, 2012 2:29 PM
Joined: 9/29/2012
Posts: 50


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


struggling
Posted: Thursday, November 29, 2012 2:39 PM
Joined: 9/29/2012
Posts: 50


John50

Do you still have your facebook group?  If so, I would like to join.  Give me detailed instructions please


Mimi S.
Posted: Friday, November 30, 2012 10:05 AM
Joined: 11/29/2011
Posts: 7027


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.


wvgranny
Posted: Monday, January 21, 2013 7:25 PM
Joined: 12/31/2012
Posts: 2


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.
Myriam
Posted: Monday, January 21, 2013 7:48 PM
Joined: 12/6/2011
Posts: 3326


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 

 

 


John50
Posted: Monday, January 21, 2013 8:05 PM
Joined: 3/14/2012
Posts: 140


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


Iris L.
Posted: Monday, January 21, 2013 9:01 PM
Joined: 12/15/2011
Posts: 18357


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.

TZ
Posted: Tuesday, January 22, 2013 12:38 AM
Joined: 9/19/2012
Posts: 8


Hi John. Add me please.
wvgranny
Posted: Tuesday, January 22, 2013 11:43 PM
Joined: 12/31/2012
Posts: 2


Thanks alot
John50
Posted: Wednesday, January 23, 2013 7:11 AM
Joined: 3/14/2012
Posts: 140


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!
struggling
Posted: Wednesday, January 23, 2013 2:02 PM
Joined: 9/29/2012
Posts: 50


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.
gregg1
Posted: Wednesday, January 23, 2013 4:33 PM
Joined: 1/14/2013
Posts: 81


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.


Iris L.
Posted: Wednesday, January 23, 2013 5:07 PM
Joined: 12/15/2011
Posts: 18357


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.

Mimi S.
Posted: Wednesday, January 23, 2013 7:14 PM
Joined: 11/29/2011
Posts: 7027


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.
gregg1
Posted: Wednesday, January 23, 2013 9:02 PM
Joined: 1/14/2013
Posts: 81


thanks for you help I think I'm getting better. We'll see what happens tomorrow.
 
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