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

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  • Gabbycam
    Gabbycam Member Posts: 63
    Third Anniversary 25 Likes 10 Comments 5 Insightfuls Reactions
    Member
    https://alzconnected.org/discussion/comment/269135#Comment_269135

    Hi Diane,

    I'm so sorry, I understand what it's like not to be able to take the infusions. I opted not to because I have a higher risk for ARIA and brain bleeds because of I have 2 APOE4 genes. You are in the right place. I have found this platform is a little clunky - but we are making do. I would love to get to know you more. I'd love to hear more about you.

    Kerry

  • chemist867
    chemist867 Member Posts: 1
    First Comment First Anniversary
    Member

    I had the cognitive assessment, blood tests, and metabolic PET scan a year and a half ago. So far, everything indicates early-onset Alzheimer's since I'm in my early 60s. My insurance doesn't cover the amyloid PET, so I need to wait for Medicare. My working memory (short-term memory) is gone. I'm unable to remember anything I read, hear, or see. My math skills have become very poor, but I'm still able to reason. Remembering names is an issue, as is finding the right word in conversations.

    This is all very distressing, and the stress only gets worse with time because I don't know what's around the corner. I'm still the family provider, working part-time, but I don't know how long that will last. I'm concerned about what will happen when I'm no longer able to work since I am not a man of means.

    I dread ending up in a public nursing home. I visited one many years ago, and it looked worse than Hell. I wish I could end on a bright note, but I can't think of one.

  • Gabbycam
    Gabbycam Member Posts: 63
    Third Anniversary 25 Likes 10 Comments 5 Insightfuls Reactions
    Member

    I’m so sorry about what you’re going through. I understand that kind of uncertainty, the waiting, the fear about what’s changing, and the pressure of still trying to work while your mind feels different. It’s real, I remember feeling so much of that fear and anxiety.

    Being stuck without the amyloid PET is hard, but don’t stop fighting for answers. There are new FDA‑cleared blood tests that can be used and your PCP is the front door for these tests. It took me years to get my diagnosis, and it was scary, they didn't have the blood test when I was going through it. I advocated for this test to become available for people just like you. Call the Alzheimer's Association's helpline for more information. Their helpline number is 800‑272‑3900. They can talk with you anytime, (and it is ALWAYS a live person). They help you sort through next steps, and connect you with resources you may not know about.

    I'd love for you to join our group. Look for the This is Us Group and hit join. I'm Kerry - and my friend you are not alone.

  • TammyB63
    TammyB63 Member Posts: 6
    First Comment
    Member

    Thank you Kerry, i have been looking for a group because I am so lost in all of this, And don't know what direction in. And doing it alone is terrible. My heart goes out to anyone with this disease.

  • Gabbycam
    Gabbycam Member Posts: 63
    Third Anniversary 25 Likes 10 Comments 5 Insightfuls Reactions
    Member
    https://alzconnected.org/discussion/comment/270694#Comment_270694

    When I got my diagnosis, I felt like I was the only one in the world like me. It was a reallly dark time, I have since come to that I have a lot of joy left to live. I have been in touch with the Alzheimer's Association and we are hoping to get a short term support group together so we can meet over zoom. It would be wonderful to get to see everyone in person.

    Make sure you check it out. Here is the link.

    Kerry

  • Gabbycam
    Gabbycam Member Posts: 63
    Third Anniversary 25 Likes 10 Comments 5 Insightfuls Reactions
    Member

    Oops! Here is the link. https://alzconnected.org/group/66-this-is-us-a-living-with-dementia-group

  • lindajny
    lindajny Member Posts: 29
    10 Comments 5 Likes 5 Care Reactions
    Member
    https://alzconnected.org/discussion/comment/270694#Comment_270694

    Hi,

    I was diagnosed at the beginning of the year and I’m still trying to figure out how best I can organize things for my family (mainly my husband). I have unfortunately not found great support within the medical field. Quite a bit a misinformation has been given to me. I rely on the Alzheimer’s Association for guidance but I fear when I won’t be able to process things

  • saradooley
    saradooley Member Posts: 12
    10 Comments
    Member

    Hi Kerry,

    I notice you mention a possible short term support group on Zoom that you are trying to coordinate with the Alzheimer's Association. Any luck?

    Sara

  • Sco-B
    Sco-B Member Posts: 5
    First Comment
    Member
    https://alzconnected.org/discussion/comment/266311#Comment_266311

    thanks Kerry. Do you mind sharing the invite again? I did not receive.

  • Hondo
    Hondo Member Posts: 1
    First Comment
    Member
    https://alzconnected.org/discussion/comment/268113#Comment_268113

    I was diagnosed a month ago at 62. Can you send me a invite? Thx!

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

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