Knowing doesn't change the losses

momikins

I am recently DX'd w/ early onset Alzheimer's (who I call Al, who is friends with my other guy ARThritis). I am a Former Alzheimer's specialist serving as the director of a local Alzheimer's association, Developer and creator of residential services and, in my youth, a personal care worker for those with Alzheimer's. None of those experiences ease the personal journey for me or my loved ones. What it does is give me (I hope) an intention to be a gracious receiver. So far it isn't easy. When my main people, my daughter and my husband, ask pointed questions, as diplomatically as they can, I know where they are heading, and I know they are right but if feels like part of a million tiny cuts. Then I remind myself the cuts go both ways because every loss I have is added to all their losses now and in the future. I look forward to sharing with and learning from this group

LBC83

Welcome to the group that nobody really ever wanted to join :)
After my AD diagnosis, I volunteered to serve a 1-yr stint on the Alzheimer's Association Early-Stage Advisory Group. It is an interesting experience, working with a team of others diagnosed with AD to help guide the overall efforts of the Alzheimer's Association.

After my diagnosis, I elected to start on Leqembi, one of the two anti-amyloid medications approved by the FDA (Kisunla is the other drug, it wasn't available when I was diagnosed). I recently had my 39th infusion. I soon hope to switch to the new IQLIK version for maintenance dosing which is self-administered via a subcutaneous injection. I recently had one of the newer blood tests, which showed that my brain is cleared of amyloid plaque (i.e. the Leqembi worked as advertised and removed the amyloid plaque). I have not had any side effects from my Leqembi infusions, but I should note that in the clinical trials (and reportedly in real-world conditions, some taking anti-amyloid medications do experience brain swelling / bleeding, referred to as ARIA. Most cases of ARIA have no symptoms, they are only discovered via MRI scans performed regularly to check for ARIA. Once ARIA is discovered, treatment with anti-amyloid medication is paused until the ARIA naturally clears, at which point treatment may resume.

Dorse

https://alzconnected.org/discussion/comment/260389#Comment_260389

Thank you for sharing your experiences.

Dorse

https://alzconnected.org/discussion/74796/knowing-doesnt-change-the-losses

Momikins, I am curious as to your age?? I am 80, diagnosed 5 months ago with early alzheimer's. This diagnosis is life changing for sure. Do you plan on getting the infusions? I have been waiting 5 months after approval to start the infusions, no infusions yet.