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Alzheimers Association Apology.
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.
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.
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.
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?
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
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.
Its so sad but I don’t even remember the original post I am complaining
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.
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.
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.
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.
The following email was sent out today.
From: Michael Ellenbogen Sent: Tuesday, July 14, 2020 7:40 AMTo: Beth KallmyerSubject: 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.
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.
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?
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.
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.
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.
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 PMTo: Michael Ellenbogen Subject: Re: Why do you tell me one thing and your folks do something
The admin team revised the
guidelines and put them up for all to view at the top of each forum:
As you will see, it explains
the reason a post might be deleted or locked and the process for notifying the
Hope this helps. Have a
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.
They heard you and made changes.
Despite all the criticism you persevered and really accomplished something that will benefit all of us. Thank you.