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ALZConnected Q&A Thread

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  • ALZConnected Moderator
    ALZConnected Moderator Administrator Posts: 86
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    edited April 2023

    Please note that this thread is designed for questions and answers. We understand that transitions from one platform to another can come with an adjustment period, but please keep posts within our Community Guidelines. Thank you kindly.

  • ALZConnected Moderator
    ALZConnected Moderator Administrator Posts: 86
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    Admin

    There is no time limit as to when users can edit their posts.

  • Iris L.
    Iris L. Member Posts: 4,421
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    edited April 2023
    I believe it is 24 hours. I will do a test.
    I edited a post from 4/7 and it posted, so the limit is not 24 hours.
  • Michael Ellenbogen
    Michael Ellenbogen Member Posts: 991
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    Am I going crazy or are my comments being deleted

  • Quilting brings calm
    Quilting brings calm Member Posts: 2,487
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    How do we quickly get back to the top of a discussion? A different forum I am in has an up arrow key button to do that.

    I also still want to know what the points mean in my profile

  • [Deleted User]
    [Deleted User] Posts: 0
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    The user and all related content has been deleted.
  • M1
    M1 Member Posts: 6,788
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    Thanks for posting that Victoria. Moderators: really?????

  • ALZConnected Moderator
    ALZConnected Moderator Administrator Posts: 86
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    Admin

    While there is no button to take you to the top of a discussion, you can quickly scroll up using the Page Up key on your keyboard. Alternative, pressing the Home key (or pressing the Shift and Space key simultaneously) will take you to the top and the End key will take you to the bottom of the page. If you're on an iPhone/iPad, you can tap the time at the top-right of your device to be taken to the top of a page. Android devices do not have such a feature that I could find without installing an app.

    As for points, this is a feature of our new platform but we have no plans to utilize them for anything. We are working on a way to remove them to avoid confusion.

  • Iris L.
    Iris L. Member Posts: 4,421
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    edited April 2023

    Thanks for posting and clearing this up, Victoria! Wow!


    I have been participating on the board for over 13 years in order to help people living with dementia, both patients and family members. I am not here for brand loyalty or engagement or to compete with others to see how many points I can accummulate!


    As a matter of fact, I used to feel part of a community. I told new members that this was an online support group. Now, I can no longer tell them that. Now, I feel like I am a pawn in someone's game. I felt that from a week ago when the platform changed, now I KNOW the reason why I feel like a pawn in a game, because it is a game! I am so sad.


    Already I have been posting less and reading fewer threads. I used to read every new thread on the two caregiver boards and the two patient boards, now I only read three or four threads. I have lost my motivation. It's not that I can't keep up with the myriad changes, it's that I feel manipulated. I won't stay around people who manipulate me. I cannot speak for others, because I know they need the very valuable information and support that used to be a part of these message boards, including the lost Clinical Trials board.


    Just dropping points won't be enough. The fact remains, members are now expected to compete against each other. As someone said, our prom is a funeral. How do we compete for that?

  • ALZConnected Moderator
    ALZConnected Moderator Administrator Posts: 86
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    Admin


    While we appreciate your feedback, please keep in mind that this thread is designed for questions and answers. That said, we wanted to address your concerns regarding points. While some message boards encourage users to post for points, ALZConnected is not designed to be such a community. ALZConnected will remain an ever-updating support group for people around the country that are affected by Alzheimer's Disease or another dementia.

    As for your concerns about the Clinical Trials board being removed, you can keep an eye on the latest news on research on alz.org/news or by downloading the Science Hub app on your mobile device. You can also learn more about research by checking alz.org/research.

    We hope that you and other members continue to connect with one another. Thank you for your participation.

  • Michael Ellenbogen
    Michael Ellenbogen Member Posts: 991
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    Then why have you not fixed my issue and you just delete my request or comment.

  • [Deleted User]
    [Deleted User] Posts: 0
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    edited April 2023
    The user and all related content has been deleted.
  • Michael Ellenbogen
    Michael Ellenbogen Member Posts: 991
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    edited April 2023

    Is there a reason you cannot make the Threads one third the size they are now so more fit closely together.

     

    Also can you make these bigger?   


     

    One should also be able to select the tread as long as they select inside the box not just the first data line.

     

     

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    Discussion List


     

    ALZConnected Q&A Thread

    Hello all, The ALZConnected team wanted to let you know that we very much appreciate the constructive feedback we've read since the new platform's launch. We're listening and doing what we can to make…

    Announcement

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    Daughter with early onset

    Are there no others in this quiet sorrow? I am a retired nurse with long dementia care experience. It's my 58 year old daughter in this instance, and her sister and I are overseeing her care. We are n…

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    Most recent by GHJ

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     94

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  • [Deleted User]
    [Deleted User] Posts: 0
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    edited April 2023
    The user and all related content has been deleted.
  • Last Dance
    Last Dance Member Posts: 135
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    From Last Dance

    How much did you pay to have this new site, and who did it?

    Did you vet them before you had them to it ?

    Did you try it or even look at it before you released it?

  • Michael Ellenbogen
    Michael Ellenbogen Member Posts: 991
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    I think it was an organazaion called BlackBaud. Very sad it what they did if it was them. My daughter once worked for them.

  • M1
    M1 Member Posts: 6,788
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    The "long distance" board seems to be the least used so far. Maybe consider regrouping? I didn't see anything wrong with the previous groups on the old board.

  • ALZConnected Moderator
    ALZConnected Moderator Administrator Posts: 86
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    Admin

    Thank you for your feedback. You are welcome to directly message any member of ALZConnected, including peer volunteers.

    You are limited to blocking five users currently. If there is an instance where you are being spammed, please report the spammer and the moderation team will review the situation.

    Regarding changing your username, doing so will update your prior posts (including those imported from the previous platform). The quote section will not disappear if someone is quoting your post in their discussion thread.

    While you yourself cannot delete your account, you can request to have it done so. We can either deactivate your account, leaving up your old posts and allowing your account to be reactivated again in the future, or we can delete your account completely, removing all of your posts.

    We are currently looking into increasing the font size on ALZConnected. There is currently no option to increase the size of your avatar; however you can click on another user's profile to see a larger version of it. We cannot currently move badges and do not have immediate plans to remove them. Thank you for your understanding and for your engagement on ALZConnected.

  • ALZConnected Moderator
    ALZConnected Moderator Administrator Posts: 86
    10 Comments First Anniversary 5 Likes
    Admin

    Thank you for your feedback. We are working on increasing the font size. We are unable to accommodate your other requests at this time. Your patience and understanding is greatly appreciated. Thank you for staying engaged with ALZConnected.

  • ALZConnected Moderator
    ALZConnected Moderator Administrator Posts: 86
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    Admin

    Thank you for your feedback. Unfortunately, we were unable to recreate the scenario you described. When you click on a thread that you have already clicked on before, you will be taken to the latest posts on that thread that you have not yet read. You may have to scroll down to see new posts.

    If you want to see all of the discussion threads across all boards in chronological order, you can click the Browse All Discussions icon from the Home Page. You are correct in that some boards are nested within one another. You can see all of the available boards by visiting the Discussions page here.

    We appreciate your engagement with ALZConnected.

  • ALZConnected Moderator
    ALZConnected Moderator Administrator Posts: 86
    10 Comments First Anniversary 5 Likes
    Admin

    Thank you for your inquiry. We understand that the change in boards may take some getting used to, so we appreciate your feedback. ALZConnected's new platform is hosted by Vanilla. We tested the boards extensively before launching them to the public, and will continue to do so into the future.

  • ALZConnected Moderator
    ALZConnected Moderator Administrator Posts: 86
    10 Comments First Anniversary 5 Likes
    Admin

    We currently have no plans to change the discussion boards, but we appreciate your feedback.

  • jfkoc
    jfkoc Member Posts: 3,882
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    What happened to private messaging???

  • ALZConnected Moderator
    ALZConnected Moderator Administrator Posts: 86
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    Admin

    Here is a post with instructions on how to send another member a private message.

  • towhee
    towhee Member Posts: 472
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    For how long will a draft be saved? Is there an automatic discard?

  • towhee
    towhee Member Posts: 472
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    I went back to the "community tour" posts and saw that the "community guidelines" post is no longer at the top of the page. Is there a way it can be kept at the top? We seem to have a problem with people using names and e-mail addresses in posts. When you register for the site are you directed to read the guidelines? When you are filling out your profile there is an option to have your e-mail address public. What exactly does this option do?

    Thanks

  • M1
    M1 Member Posts: 6,788
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    Would there be a way to put the guidelines at the top of each discussion section, like they used to be on each forum page on the old site? Would be much more visible and accessible that way.

  • michiganpat
    michiganpat Member Posts: 143
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    I see a lot of placating from the moderators and probably they have no say in changes. Reminds me of going to a road commission meeting which was for citizen input. The next day there is an article in the paper thanking us for our input but no changes to be made. The meeting was for show with no intention of making any changes. My biggest complaint, among many, is refusing to make members pictures bigger so we can see who is posting. Makes no sense. Sorry to be so negative but I am sad for the many people who rely on this site for support.

  • Michael Ellenbogen
    Michael Ellenbogen Member Posts: 991
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    edited April 2023

    I still have many issues they have not addressed. I would like them escalated management.

  • ladyzetta
    ladyzetta Member Posts: 1,028
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    I agree with Michael, I see a lot of questions but no good answers. I think this question answer is a time waste because I see no change. I am learning more from the boards and what the members are having to deal with. I am still totally lost.

Commonly Used Abbreviations


DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
Read more