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Early Onset

maryannbarnsley
maryannbarnsley Member Posts: 6
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in I Am Living With Younger Onset Alzheimer's
Hi, I am 59 years old and was just diagnosed with early onset Alzheimer's. To say the least I am devastated. Lots and lots of ugly crying. I am trying to get my hands around all of this, so many things to do and so many questions?

Has anyone ever been on a clinical trial? What was it like?
I have started taking namenda/memantine and donepezil/aricept
I am going to have genetics testing next month to see if I qualify for liqembi. If you are currently taking that, can you still work? Especially the day of the IV?

I am high functioning but the unknown is scary as hell

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  • [Deleted User]
    [Deleted User] Posts: 0
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  • Iris L.
    Iris L. Member Posts: 4,541
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    Welcome Kristin and MaryAnn. I was 58 when I was diagnosed as cognitive impairment not otherwise specified by my neurologist. I too have white matter disease, called leukoairiosis. Please look that up. I have learned quite a lot from the members, there is a lot of knowledge here.

    Iris

  • LBC83
    LBC83 Member Posts: 28
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    edited December 2024

    Sorry to read about your AD diagnosis. I know it is hard, but try to keep your spirits up, and enjoy each day as best you can.

    I'm 63 and was diagnosed with MCI about a year ago. There are lots of postings for those with AD over in the "I'm living with AD" forum in the AlzConnected website at the link below.

    Specifically, you may be interested in the thread titled "Treatment with Lecanemab (Leqembi)"

    There are currently two FDA-approved drugs for slowing the degradation associated with AD: Leqembi and Kisunla. Clinical trials showed they both slowed the disease progression by almost 30%, some have translated that into buying about 6 more months at a given level of functionality (i.e. you would be able to continue to drive for 6months longer while on one of the drugs compared to if you were not taking either drug). The Leqembi infusion is bi-weekly, the Kisunla infusion is monthly. Patients can stop taking Kisunla when amyloid beta is cleared from the brain, while treatments with Leqembi are currently recommended to be terminated once the patient reaches later stages of AD. During the clinical trials, incidents of Amyloid Related Imaging Anomalies (ARIA) are higher with Kisunla compared with Leqembi. Although the name may sound innocent, the danger is high, as we are talking about brain bleeding and/or brain swelling. As a preventative measure, standard treatment for anyone on Leqembi or Kisunla is to periodically receive MRIs early during treatment, to check for ARIA.

    I just had my 13th infusion of Leqembi, with zippo side effects. This week I have my last third and final MRI. I am perfectly fine after each infusion, one day I went to the gym and ran a 5K. I'm retired, but I would easily be able to keep working while on Leqembi. My adjustment to Aricept was harder than anything with Leqembi.

    Here is the link to the other forum with posts about Leqembi. There is also a restricted group Facebook called "Leqembi Support Group". Over there, over 100 people (or their loved ones) post about their experiences with Leqembi.

    https://alzconnected.org/categories/i-have-alzheimers-or-other-dementia

  • maryannbarnsley
    maryannbarnsley Member Posts: 6
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    https://alzconnected.org/discussion/comment/231138#Comment_231138
    https://alzconnected.org/discussion/comment/231138#Comment_231138

    Thanks for the reply Kristen

    I am lucky enough to have a good support group. My father died of Alzheimer’s so I saw the progression first hand, but it was a tremendous help to have people around.

    Will you be able to build some sort of support group?

  • maryannbarnsley
    maryannbarnsley Member Posts: 6
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    Thank you for sharing your experience with Liqimbi and the other groups. I Will definitely be checking them out. Even though I have a good support system it still feels like I’m alone in this, like no one can truly understand how I feel and think, and it changes all the time. I started crying in the grocery store today

  • maryannbarnsley
    maryannbarnsley Member Posts: 6
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    https://alzconnected.org/discussion/comment/231191#Comment_231191

    Thank you for all this great info!

  • BJH73
    BJH73 Member Posts: 1
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    https://alzconnected.org/discussion/71457/early-onset

    I'm in the same boat.... Or sinking ship as it were. I am having a very hard time processing this I'm only 52 😢

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
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