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Alzheimers Association Apology.
Michael Ellenbogen
Posted: Friday, July 3, 2020 6:05 AM
Joined: 11/30/2011
Posts: 4323


Is there a way to change the original title of this thread? Thanks
NewCGiver
Posted: Friday, July 3, 2020 1:13 PM
Joined: 1/13/2019
Posts: 20


Just stop. No matter how many times you post, they will not respond. They don’t look at the message boards. You are trying to ruin AA for everyone else. The organization helps people. You are going to make people leave with your comments. Just because you don’t like them doesn’t mean they don’t help others. Take the hint. You are never getting a response here
Lane Simonian
Posted: Friday, July 3, 2020 1:34 PM
Joined: 12/12/2011
Posts: 5107


You can have a negative view of the Alzheimer's Association and still keep posting on these boards for the benefit of others.  And you can have a positive view of the Alzheimer's Association and not to be turned away by criticisms of it.

I agree with Michael, valuable information is lost when a whole thread is wiped out.  This is particularly regrettable when an individual has put a great deal of time, effort, and thought into making a post.  I am not sure why the Alzheimer's Association cannot be more even-handed in how it decides to handle controversial matters.  My own view is that unless a person is being vicious and hateful posts should remain.  Take the time to just delete particularly offensive posts rather than erasing a whole thread.  And then indeed just lock the thread if things have gotten too far out of hand.

A lot of money does go into the Alzheimer's Association.  I believe that there are other organizations that are more responsive to both people with dementia and researchers.  Sometimes the more powerful and wealthy an organization becomes, the less capable it is of listening to those who really count.


Michael Ellenbogen
Posted: Friday, July 3, 2020 3:34 PM
Joined: 11/30/2011
Posts: 4323


NewCGiver - You must be the perfect caregiver as you don’t seem to have any question since all of the only 3 replies were to say something to me negatively rather than trying to encourage me. If you should want to volunteer for AA I think they would love to have you since you know all there is to know about caregiving. Maybe you could help some of the people here with your great tips as that may be a bit more helpful.  I know I spend a lot of my short time trying to help them because I care about them and want them to succeed in more ways than you can imagen.  


NewCGiver
Posted: Friday, July 3, 2020 3:47 PM
Joined: 1/13/2019
Posts: 20


Just saying what others are thinking but won’t say. I think your complaining is a turn off for people. Your posts are always complaining about AA. People don’t need to read that. Stop making everything so personal. If I was just starting out, your posts would make me think that there was no help for me. That’s not what your messages should be saying.
Michael Ellenbogen
Posted: Friday, July 3, 2020 3:54 PM
Joined: 11/30/2011
Posts: 4323


You may be right but others may be thinking the same as me and are afraid to speak up. I know many people like that who have reached out to me privately.  You may not believe this but this will benefit you to if it ever happens.  Would you want your love one to be treated the same by them as they have treated me? I have done so much for this cause that you can not even imagine.  Please give me a little credit for sticking up for those like me with dementia as we also deserve to have rights. 


NewCGiver
Posted: Friday, July 3, 2020 4:00 PM
Joined: 1/13/2019
Posts: 20


The AA helps people. We get it loud and clear that you don’t like them. But they do help. They help a lot of people. I know for a fact that they help people with dementia. I’ve seen it. You are just making others turn away from something that could benefit them greatly. You think you are helping but you are trying to turn everyone against the Alzheimer’s Association. That’s a terrible thing to do.
Michael Ellenbogen
Posted: Friday, July 3, 2020 4:07 PM
Joined: 11/30/2011
Posts: 4323


First of all I never said I do not like them. I believe they do some great things that no one else does. I also know there are many things they don’t do. It comes from knowing them all at the top level and all others around the world who do this. I took many arrows znd stuck up for them and I still will for the right reason and they know it. Is it wrong in life to want and expect better? 


Michael Ellenbogen
Posted: Friday, July 3, 2020 4:37 PM
Joined: 11/30/2011
Posts: 4323


Not sure if you received it but I had sent you a connection request. :Love to speak with you as my writing is no longer one of my strong points. I wish you could hear why I feel the way I do.  Thanks


jfkoc
Posted: Friday, July 3, 2020 5:38 PM
Joined: 12/4/2011
Posts: 20914


I think that the most useful thing AA does is provide these message boards.

My local office is only interested in legislation and  honestly I think the effort is not worth the product. For example, the whole goal this past year was to get a bill passed that would mandate 1 hour of annual training for facility staff. 

I think it would be much more worthwhile to establish a speakers bureau, develop support groups, compile a directory of resources. These last two should be handed out within the medical community.

 I think they really think they could go a long way in making the website more user friendly. Try to contact your local office. Where is the number, the list of services, the schedule of support groups, the educational services for your area. Regading support groups I know that a neurologist here kept it updated.

Frankly I think we provide much more help for each other here.

I agree with Michael and Lane. It is inexcusable that researched data posted here is erased. I have been personally contacted regarding a post requesting a change to be  made so I know it is done. It is easy to lock a thread and/or contact posters that need to edit.

I see no reason to be asked to delete a post unless it violates the policies we agreed to.

I agree that Michael will not get any reply but wouldn't it be nice and really easy to just say "sorry". It would be super kind to retrieve the post with the date and return it to him.


dayn2nite2
Posted: Friday, July 3, 2020 5:43 PM
Joined: 6/20/2016
Posts: 3199


Okay.  There will be no apology.  But it's not personal.

NOBODY gets a response when asking why their posts are deleted, and the moderators no longer send any notice to the person whose posts are deleted.

This is EVERYONE.  Across the board.  So it is not personal.

Continuing to demand an apology from a message board is an exercise in futility.
TessC
Posted: Saturday, July 4, 2020 12:21 PM
Joined: 4/1/2014
Posts: 5213


I will speak up on behalf of supporting Michael. The person who removes a post should explain why they censured the post by deletion with an explanation to the original poster. They should state which point the post violated as set forth in their Terms and Conditions policy. This way it won't seem arbitrary. It shouldn't be hard to do because it is rarely done and then no one will feel they are owed an apology because they will know where they crossed the line.
jfkoc
Posted: Saturday, July 4, 2020 1:49 PM
Joined: 12/4/2011
Posts: 20914


Good idea....I know I have been accused of "always reporting" but truly I only report when I think the policies have been broken. I always post that I am reporting and from now on I will include the reason. Seems only fair.
lizziepooh
Posted: Saturday, July 4, 2020 11:08 PM
Joined: 5/2/2019
Posts: 390


Michael Ellenbogen wrote:

Its so sad but I don’t even remember the original post I am complaining about.

 

To Michael: I believe the thread in question was called Perceived and I believe I am the reason it blew up. I don't mean to be the reason but I often am.

 
And this time, I do not remember it because I was too drunk to remember it so that is never a good sign. I never mean to be a bitch. But if I was drinking it is highly possible I was mean and could fairly be called a bitch.
 
It is possible that I am the one to owe you the apology. If they left the thread, we would know that for sure.
 
If they left the thread, I hope I would be honorable enough to admit I was wrong, if I was wrong but now we will never know.
 

lizziepooh
Posted: Sunday, July 5, 2020 1:14 AM
Joined: 5/2/2019
Posts: 390


The thread was called perspective and not perceived. Just wanted to correct that...
Michael Ellenbogen
Posted: Sunday, July 5, 2020 6:26 AM
Joined: 11/30/2011
Posts: 4323


Thank you so much lizziepooh but you do not owe me or anyone an apology.  I believe that we should all have the freedom to be heard as long as we are not cursing at each other. I also believe that if you let it go on long enough we can help get others to may be see the others point or at least what they may mean and why they feel the way they do. It has worked for me all my life as ,most could not see it thill I had the chance to explain it. I also have my drinks regularly after 3 PM. I have been there an done that and that me be times I may need to say I am sorry if I said something wrong. No big deal as many of us have been there. I love my beer. I tried to do that with the person on this tread but refused to connect with me so I could explain its not a personal thing. We also relize after a while if we should not have said something based on others comments. I know I have asked others if I was wrong when I saw many negative comments

 

I like many of your suggestions but for me if they delete it I would want them to share my words back with me for my record. I had spent days working on getting the information reach out to others and had lost of dialog with the others side in order to get permission to share what I did. So for me it is more important to have back what I said.

 

Also if they lock up a tread they should be specific to let you know why it was locked up not a general message.

 

 

I have to admit I have been spoiled by AA as they did reach out to me personally many times when I created a tread to try to get me to understand why I should not do something. Id did not always agree and sometimes they had deleted it before total understand what was meant but it was already to late and they could not place it back. That part I find said as they also misunderstood and jumped the gun. But I will be honest I do have trouble understanding what can be added or can not be added and therefore I real on many of you to guide me. 


jfkoc
Posted: Sunday, July 5, 2020 1:22 PM
Joined: 12/4/2011
Posts: 20914


Because thing have been known to disappear many will write out their post and then copy/paste it here. Additionally threads that become "argumentative" are copied. This stated several years ago when a member was very abusive and several of us wanted a record of what was said since it was certain that she or the moderators were going to do some deleting.
Michael Ellenbogen
Posted: Sunday, July 12, 2020 6:58 AM
Joined: 11/30/2011
Posts: 4323


Even thought I had said I would not do this I plan on sending a copy of this to just one of my friends directly by email to insure at least it was brought to their attention. I don’t want to assume it was if it was not. 


FTD Wife
Posted: Monday, July 13, 2020 7:15 PM
Joined: 3/4/2020
Posts: 1


Michael, what is your diagnosis and how long have you been ill?
Michael Ellenbogen
Posted: Tuesday, July 14, 2020 5:39 AM
Joined: 11/30/2011
Posts: 4323


Its very complicated answer and to be honest with you I don’t know they will know until I dies and perform the biopsy. It took me 10 years to get a diagnoses if Alzheimers but they thought it may have been semantic dementia. Fast forward 10 years with new test available in trails they found I did not have amyloid. I now fell in some new category (Maybe SNAP) but cannot think of the name at this point and they think it could be semantic dementia. So I still have doctors who still believe I do have AD even knowing of the trail test I had. One thing I knew is more than 50 percent of people have 3 or 4 types when they die so thing know one can really know till you are dead.  

I no longer care what it is.  


Michael Ellenbogen
Posted: Tuesday, July 14, 2020 6:43 AM
Joined: 11/30/2011
Posts: 4323


The following email was sent out today.

 

From: Michael Ellenbogen
Sent: Tuesday, July 14, 2020 7:40 AM
To: Beth Kallmyer
Subject: Just making sure you are aware of this thread.

 

Good morning Beth,

 

I hope all is well with the family. I am not looking for any favoritism here but I just wanted to insure someone knew about this tread that I had started over 3 months ago after some of my comments were delete in a thread. It was actually one I had hope to give a different perspective on Biogen, I think. That’s the problem it was deleted and I have no idea what it was about and I had worked on it for many days & hours.

 

I had forwarded an email to the helpdesk to address this and even asked the moderators to insure some one at AA knew about this asking for a reply. It is time for change and I would like to see some reply to this tread as I want to put this behind me.

 

I just did not want to assume you knew about this and did not take any action. If you choose not to that is completely up to you. My intention with this email was to just insure it was seen and that is it. Up to you on how you handle this.

 

I also do not want to talk about this in a phone call as I want to be treated like any other person on the site without special consideration.

 

This is very important to me as it is hard enough to slowly lose your vice in this world and even worse when people delete what you try to say as you struggle to right it.

 

I will be adding this email to the thread and below is the complete thread that I copied from the site.

 

Thanks and have great day and please say hello to Harry for me.

 

Michael


Michael Ellenbogen
Posted: Tuesday, July 14, 2020 10:58 AM
Joined: 11/30/2011
Posts: 4323


I did received a call from AA but missed it. They did not think anything of mine was deleted. I need real help from those who may have the actual copy of what was deleted so they can see it or the actual title of that thread. I did call back and left a message for Beth. 


Michael Ellenbogen
Posted: Tuesday, July 14, 2020 11:17 AM
Joined: 11/30/2011
Posts: 4323


I received a call back from AA. They are not aware of what was deleted but will look into this. As I said I need your help.  They are going to look at their procedures and possibly make some changes which they will let us know. Apparently they were not aware of this thread as management was never made aware of this issue by any moderator. I find that very sad.   

 Who started the originl Thread and do you have any parts of it? Do you have any dates?


Michael Ellenbogen
Posted: Tuesday, July 14, 2020 1:43 PM
Joined: 11/30/2011
Posts: 4323


There reply is coming shortly as the finally found out what happened and caused the issue. I will let AA tell you.
Michael Ellenbogen
Posted: Wednesday, July 15, 2020 6:36 AM
Joined: 11/30/2011
Posts: 4323


As I am waiting for the answer here it really makes you wonder why none of the moderators made anyone in management aware of this. Do they really care? It was such a simple request to do. 


Michael Ellenbogen
Posted: Tuesday, July 21, 2020 9:52 AM
Joined: 11/30/2011
Posts: 4323


I am very concerned as I still see the moderators taking action they should not be doing. I had a conversation with Beth Kallmyer from AA last week and was assured this thread would be updated. It has not and they continue to do stupid things here. I am starting to wonder who is really in charge of the staff if they don’t listen to the top management. I have sent them more emails about the latest thread being locked out. 


NewCGiver
Posted: Tuesday, July 21, 2020 10:15 AM
Joined: 1/13/2019
Posts: 20


The thread that was locked was due to you being overly critical of caregivers. Multiple people pointed that out to you yet you refused to see it. This is for people to get help, not to be told their caregiving isn’t good enough. You seem to be blind to the effects of your comments. If you can’t see that people are trying their best and doing what they need to do to keep their loved ones safe, than you are the problem.
ruthmendez
Posted: Tuesday, July 21, 2020 10:21 AM
Joined: 9/8/2017
Posts: 2339


Perfectly said NewCGiver. And he’s well aware of what he’s doing. There’s something else going on here.

It would be nice if this thread is locked too. Unfortunately, it won’t end for a long long time. AA is being fair I think.


NewCGiver
Posted: Tuesday, July 21, 2020 10:31 AM
Joined: 1/13/2019
Posts: 20


Ruthmendez.  Sadly, I think this has to do with a grudge he is holding against AA and people on these boards are just collateral damage. I believe he fully knows what he is doing but just refuses to admit it. AA isn’t going to give an apology. We all know this. Just a shame that he has to cloud these boards with constant negativity because it is a really good resource for everyone.
dayn2nite2
Posted: Tuesday, July 21, 2020 11:32 AM
Joined: 6/20/2016
Posts: 3199


Totally agree.  Time to put this issue to bed and he can take it up privately with them.
Michael Ellenbogen
Posted: Thursday, July 23, 2020 5:55 AM
Joined: 11/30/2011
Posts: 4323


Below is an email I received and it looks like all of you now won for a better place and your information will no longer be deleted. Please try to get along so this does not even need to be used.  Thanks to all for the support.

 

From: Beth Kallmyer
Sent: Wednesday, July 22, 2020 5:38 PM
To: Michael Ellenbogen 
Subject: Re: Why do you tell me one thing and your folks do something else.

 

Hi Michael

 

The admin team revised the guidelines and put them up for all to view at the top of each forum:

 https://www.alzconnected.org/discussion.aspx?g=posts&t=2147553329

 

As you will see, it explains the reason a post might be deleted or locked and the process for notifying the poster.  

 

Hope this helps.  Have a good night.


Beth


Unforgiven
Posted: Thursday, July 23, 2020 2:49 PM
Joined: 1/28/2013
Posts: 2659


That really clarified things.
lizziepooh
Posted: Friday, July 24, 2020 2:42 AM
Joined: 5/2/2019
Posts: 390


Lol! Yes, very clarifying.

They may or may not remove a thread, they may or may not lock it, they may or may not deem something “unsupportive”.

Yes, very clarifying and not vague at all. Lol!

But I don’t blame them. They have the right to be as vague as they want and to limit/remove what they want. They are the host; we are but guests.

I do not wish the job of moderator on anyone but for the ones that are moderators either by choice or circumstances, my advice is do not moderate based on hurt. Someone, somewhere is always hurt by what someone says. Moderate behavior if you are going to moderate anything. That is truly the only thing one can try to judge fairly, I think.

 


Michael Ellenbogen
Posted: Friday, July 24, 2020 2:59 PM
Joined: 11/30/2011
Posts: 4323


They heard you and made changes. 


jfkoc
Posted: Friday, July 24, 2020 3:55 PM
Joined: 12/4/2011
Posts: 20914


Bravo Zulu! 

Despite all the criticism you persevered and really accomplished something that will benefit all of us. Thank you.


 
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