Have any questions about how to use the community? Check out the Help Discussion.

Hoping to Start an Ongoing Conversation Space for Those Living with Dementia

13»

Comments

  • Sco-B
    Sco-B Member Posts: 12
    10 Comments
    Member

    Thanks John. Your words are inspiring and helpful.

    My husband and I spend a good bit of this past Wednesday with the clinical trial team to document our baseline assessments then on Thursday, I was back there all day for the first infusion. It gave me a sense of ease that the team there is knowledgeable, empowered, and there for you every step of the way. While 50% of participants in this trial end up with placebo, it still feels like my best bet at this point since the traditional health insurance/hospitals have not been able to figure out next steps to any treatments in the 8 months that I've been working with them. I even switched insurance companies to what they recommended.

  • amymetzger
    amymetzger Member Posts: 3
    First Comment
    Member
    Yes, I would be interested in starting a group like that. I am a 59 year old psychiatrist and I am devastated. My 20 year old son is still at home and not handling this well. My husband has been immensely supportive but he does not have the disease. I would be nice to talk with people that do.
  • Lizaru
    Lizaru Member Posts: 9
    Fifth Anniversary First Comment
    Member

    I'm interested!

  • mpowrie
    mpowrie Member Posts: 5
    First Comment
    Member
    https://alzconnected.org/discussion/comment/264806#Comment_264806

    Hi Laura. I am interested in your group. Just new at trying to navigate this website. I will await your response. I have 2 APOE4 genes

  • mpowrie
    mpowrie Member Posts: 5
    First Comment
    Member

    Hi Laura. I also have the 2 APOE4 genes and up until now, didn't know this downfall with infusions. I'm sure I will soon find out. I am brand spanking new with this diagnosis and trying to navigate how to find help and support.

  • Tessa60
    Tessa60 Member Posts: 1
    First Comment
    Member

    Hi I'm not sure if this group still exists. This is my first time on this website and have no idea how I even found this page 🤔😊. I am 60 years old and am in the process of testing. After some positive blood test results my doctor has referred me to an Ahlzeimers clinic. My appointment is on September 2nd. I'm very nervous. I can't find many articles or YouTube channels for the people who have Ahlzeimers. Everything is geared towards the caregivers. Which is great but I have questions and just need people who understand. I would love to be part of your group. But not sure if I'll ever find my way back to this page 😁.

  • Sco-B
    Sco-B Member Posts: 12
    10 Comments
    Member

    I was not successful identifying support groups through Alz.org. Here’s a quick list of options that replied with actual groups I could join:

    Dementia Minds: https://dementiaminds.org/join-a-group/

    Lorenzo’s House: https://www.lorenzoshouse.org/match

    YES: https://yessupport.org

    Scott

  • invbrown
    invbrown Member Posts: 3
    Second Anniversary First Comment
    Member
    https://alzconnected.org/discussion/comment/265252#Comment_265252

    I would also love to join the group.

  • Lizaru
    Lizaru Member Posts: 9
    Fifth Anniversary First Comment
    Member
    https://alzconnected.org/discussion/comment/279581#Comment_279581

    Hi Tessa60, I’m Liza. If you’ve made it back to this page, I find the website a little challenging, too. I’m fairly new to it, too. I’m 66 and was diagnosed at 64. I’d had symptoms for four years before that but doctors wouldn’t listen to me saying something was wrong. I was finally diagnosed with a spinal tap confirming AD. I’ve been on Lecanamab (Leqembi) for over a year with no problems. It helps a lot, I think. I’d be glad to share what I know! I’m an Advocate for the Alz. Assoc. And am early stage.

  • Lumbar4
    Lumbar4 Member Posts: 13
    10 Comments
    Member

    Hello

    It looks like this discussion started months ago, so I'm wondering if a discussion group has formed? Kerry stated back in January:

    "I’m hoping to start a small, steady discussion group just for people living with dementia. A space where we don’t have to explain ourselves, apologize for forgetting, or pretend we’re doing better than we are. A space where we can simply be real."

    I too have been looking for this in the form of Zoom meetings where we can see one another and have meaningful discussions about how we are thriving with our neurodegenerative conditions. I am located in Chico, California. Does someone from ALZconnected monitor this conversation? Can they help us get started?

    Looking for help in starting a peer-led support group~ Akhila

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

Community Guidelines


Click here to review the ALZConnected Community Guidelines

Categories