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Alzheimers Association Apology.
Michael Ellenbogen
Posted: Thursday, April 2, 2020 5:29 PM
Joined: 11/30/2011
Posts: 3494


I would like to see a public apology from the Alzheimers Association for them deleting my threads. As a person with this disease I go thru great lengths to write and place thing out to this community. I try to insure I am accurate and sometimes spend hours to put together my response. Very frustrating when they are deleted and I have no Idea it happened. This creates to much confusion for me.  

 


Jo C.
Posted: Friday, April 3, 2020 4:30 AM
Joined: 12/9/2011
Posts: 11354


 It is really important to know that IF for a significant reason, a Post or Thread is deleted by an Administrative Moderator, in ALL cases, they will notify the individual Member that this is being done and the reason why. There are no exceptions to this.  If a person has not been contacted and notified, then no one at the Alzheimer's Association has removed the Post.

In all other instances, only a Member can delete his or her own Posts EXCEPT:  If the Member is Posting on someone else's Thread, the person who initiated that Thread can delete said Thread.

So; if a Post disappears and one has not been notified of this by an Administrative Moderator, then that Post was not removed by anyone at the Alzheimer's Association.

I have been on the Message Board since 2006, and been a Peer Volunteer since 2009; in all contacts for any personal issue or other interaction, I have found those professionals on the team who administer this Message Board to be very caring and very supportive of myself and my care challenges, and also deeply caring and supportive of all of the Members as they work diligently to support and care for this Message Board .  The word, "Moderator" is a blank word that come from technology.  It is faceless and unknowing.   It does not describe the individual professionals behind the scenes in Administration who are dedicated to striving to provide and oversee (Moderate) this wonderful service to so many; and that is no small thing.  As said, I have had very good support regarding my own experience in the very difficult days I had with my Loved Ones with dementia or when I have had a problem issue. that I felt needed to be addressed.

NOTE:  If you have a problem concern or need assistance; if you wish to communicate that to the Administrative Moderator Team, at the top of this page you will find a prompt that says, "Contact Us."  You can use that to reach a variety of assistance including communicating with someone on the Administrative Team that "Moderates" this Message Board and you will get feedback.  I have found that to be helpful.

 J.

 

 


Michael Ellenbogen
Posted: Friday, April 3, 2020 7:03 AM
Joined: 11/30/2011
Posts: 3494


Please do not make excuse for them as they have deleted many of mine in the past and never said anting until I reached out to them. All I want is my data that I had worked so hared to get from key people who had helped me with my replies. This place is so one-sided with their views. They always think they no better and most time they don’t. I am tired of going to top management as they dot do anything to make it better. 


Michael Ellenbogen
Posted: Friday, April 3, 2020 8:48 AM
Joined: 11/30/2011
Posts: 3494


 Alzheimers Association claims to care about those with dementia but for 10 years working with them they ignored most request to help those living with dementia. I have a few great friends at the top but sadly this organizations is extremely slow to change for many of the wrong reasons. They care more about themselves then doing good to change things for those living with dementia. I have seen that time and time again. I can assure you I gave them many opportunities and I was very slow to learn that because I have people there that I real like as friends. Not sure they still consider me that.  For years I fought for them and told others they were wrong but there is only so much one can say before you realize that they will not change but you tried so hard to make that happen.   

 

I wants use to give them thousand a year in donations but I stooped that 5 years ago because of all of this. I had even remove them from my will which they would have had a big chunk of change. All of the organization work together to be in this fight and meet at the table monthly except AA. So what does that tell you about them.

That is why I have donated tons of my money to https://www.usagainstalzheimers.org/

 

I strongly recommend you do the same. Those people have taken many of my ideas and they are all happening in many places. Don’t get me wrong they still do some good things but it could be 60 percent better if they listened. So many of you would have it so much better if they only implemented my recommendation which they refused. That is why you all struggle for help when you need it.

 


Michael Ellenbogen
Posted: Tuesday, April 14, 2020 10:35 AM
Joined: 11/30/2011
Posts: 3494


 Why is it so hard for some to say "I’m sorry"? It’s remarkable how I knew that the Alzheimers Association would never do it as they don’t care about those with dementia and only themselves. This just proves I have always been right about them. Their motto is to just ignore it.  

 


Michael Ellenbogen
Posted: Thursday, April 23, 2020 12:57 PM
Joined: 11/30/2011
Posts: 3494


I will be using this thread going forward on this topic.  Thanks

 

 

https://www.alzconnected.org/discussion.aspx?tid=2147551923&g=posts&t=2147551921