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Another Newbie

Hi, I'm 66 and new to the group. I was diagnosed with AD in Jan. 2025 (MCI stage). Taking Lequmbi infusions every 2 weeks. AD is really a shock to the system. Overwhelmed wth stress & planning for the future (when should I start memory care?).Living with a partner in Florida whose done the caretaker thing twce before and understanably, doesn't want to go through that again. My only income is SS and investigating going on Florida Medicaid, Looking for a new place to live may come sooner that I'd like. My two kids don''t have a place for me and not ready for caretaking. As you can probably tell, overwhelmed with what to do next. Sorry for the long post.

Comments

  • LBC83
    LBC83 Member Posts: 99
    25 Insightfuls Reactions 25 Likes 10 Comments 5 Care Reactions
    Member

    As I always begin, I don't know that the term "welcome" is really the appropriate start for a reply. While I'm glad you are a participant on this site, I'm guessing your life plans didn't include joining a group like this.

    I'm 64, preliminary diagnosis of MCI in Jan 2024 with confirmation via lumbar puncture in March 2024. I started on Leqembi in June 2024, just had my 24th infusions. I'm lucky, zippo reactions so far to the drug.

    I wouldn't stress about planning for the future. I surely don't. While I recognize the possibility of a lousy outcome, I have hope for my future. For example, I recently ran across the following article about Ralph Carmona. He has been on Leqembi for 10 years! He was a participant in the early trials, and has continued treatment. He just ran in the Boston Marathon. I don't suspect Ralph was "overwhelmed with stress & planning for the future"!!!

    I appreciate the Alzheimer's Association creating this site for people to share experiences. But from my vantage point, much of the content is geared towards those who were diagnosed late in the disease progression and are not on Leqembi or Kisunla. I am very sympathetic to this situation, as I lived thorugh both my parents having dementia (presumably AD, but who knows). But for those of use who started Leqembi early, we may have a much different outcome with this dreaded disease. So don't lose hope!

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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