George King on Alzheimer’s Early Signs, Treatment, and Choosing to Live Fully | George King

Full analysis

George King, a filmmaker and artist approaching 80, describes living with early-stage Alzheimer's after diagnosis confirmed by spinal-fluid analysis. He is on the drug lecanemab (Leqembi), reports his amyloid plaque has cleared entirely on scans, and offers a first-person account of adapting — not fighting — a disease he negotiates with daily.

What was covered

• Path to diagnosis. King's parents both died with dementia (likely Alzheimer's, though undiagnosed at the time because autopsy was then required for confirmation). He monitored himself for years using word games as a personal cognitive benchmark; when an online word puzzle began flagging that he'd already entered a word he thought was new, he sought a neurologist directly rather than going through a primary care doctor first.

• How diagnosis was confirmed. His neurologist used a lumbar puncture (spinal tap) to test cerebrospinal fluid for amyloid markers. King notes this is one of two methods; the other is a PET scan, which he describes as more accurate but not covered by Medicare at the time of his testing.

• Starting lecanemab (Leqembi). King says he received his diagnosis the same day the FDA approved lecanemab and began infusions about two months later, believing he was among the first Medicare patients on the drug. The standard protocol: infusions every two weeks for 18 months, with scheduled MRIs throughout to watch for two known serious side effects — microhemorrhages (tiny bleeds) and brain swelling (ARIA, though King doesn't use that acronym). He experienced neither.

• ApoE4 genotype — a disclosure gap. His first neurologist prescribed lecanemab, then abruptly stopped treatment via a nurse without explanation. When King switched to a second neurologist, that doctor reviewed his chart and informed him he carries two copies of the ApoE4 gene (homozygous), which is associated with higher Alzheimer's risk and a higher likelihood of the drug's serious side effects. King says neither neurologist ever discussed this elevated risk with him in a meaningful way before or during treatment.

• Current status after 18 months. A PET scan after completing the induction phase showed no detectable amyloid — an outcome King's neurologist described as beyond the expected result (usually a reduction, not clearance). King is now on a maintenance dose, likely indefinitely. He also takes aricept (donepezil), a separate medication that does not slow the disease but may aid focus; he noticed cognitive sharpening about six months after adding it. His most recent annual cognitive test showed a small improvement over the prior year.

• Daily life and adaptations. King continues traveling internationally, managing household finances, maintaining a social life, and blogging and posting on Instagram (@dancing.with.delirium). His key adaptations: planning for contingencies in advance, accepting afternoon naps rather than pushing through fatigue, and approaching the disease as something to negotiate rather than fight.

Notable claims & predictions

• George King: "The amyloid is all gone" — his neurologist's words after the 18-month PET scan. King notes this exceeded expectations; standard outcomes are a reduction in plaque load, not complete clearance.

• George King: His second neurologist said of patients who had been on lecanemab since clinical trials: "I have no patients that are doing worse." King presents this as anecdotal but meaningful reassurance about the drug's trajectory.

• Deborah Kan: PET scanning for Alzheimer's amyloid "is actually more accurate" than cerebrospinal fluid testing, but "Medicare will not pay for that" — said in present tense during the recording, though this may reflect policy at the time of diagnosis rather than current coverage.

• George King: He was carrying two copies of ApoE4 and was placed on a monoclonal antibody without being told — a disclosure he learned only from a second neurologist reviewing his chart. He frames this as a systemic problem, not just his own bad luck.

• George King, on cognitive self-monitoring: A word game that flags repeated entries served as his early warning system — more specific and actionable than a general sense that "something feels off."

Fact check

Claim (Deborah Kan): Medicare does not cover PET scanning for amyloid. Context-dependent and time-sensitive. Medicare coverage of amyloid PET scans for Alzheimer's diagnosis has been a moving target. This claim may have been accurate at the time of King's diagnosis but Medicare coverage policy in this area has been expanding. Readers who are currently evaluating diagnostic options should verify current Medicare coverage directly rather than relying on this statement as settled fact.

Claim (George King): He was "probably one of the first people" on lecanemab under Medicare. Unverifiable. This is a personal impression, not a documented fact. It is plausible given his timeline aligning with FDA approval, but cannot be confirmed.

Claim: Lumbar puncture (spinal tap) and PET scan are the two methods of testing for Alzheimer's. True but incomplete. Blood-based biomarker tests (plasma amyloid and tau assays) have emerged as a third diagnostic pathway. These are not mentioned in the episode, which reflects either the timing of King's diagnosis or the conversation's scope. Readers should know the landscape has evolved.

Claim (George King): ApoE4 homozygosity raises the risk of lecanemab's serious side effects. Accurate and supported by clinical data. Carriers of two ApoE4 copies do face higher rates of ARIA (amyloid-related imaging abnormalities — brain swelling and microbleeds) on anti-amyloid therapies. The failure of King's first neurologist to discuss this before prescribing is a legitimate patient-safety concern, not an exaggeration.

Why this matters for you

• If you or a family member is considering lecanemab or donanemab (the two FDA-approved anti-amyloid drugs), ask directly about ApoE4 status before starting. King's account illustrates that a homozygous ApoE4 result — the highest-risk genotype — can sit in a chart without being discussed. Knowing your status is relevant to how closely you need to be monitored and how to weigh the benefit-risk decision.

• Early self-monitoring is worth taking seriously. King's experience suggests that a structured personal benchmark — something specific and repeatable, like a timed cognitive game — can surface changes earlier than waiting for symptoms to affect daily functioning. If you have a family history of dementia, this is worth discussing with your doctor as a practical early-detection strategy rather than waiting for impairment to become obvious to others.

• Medicare coverage of Alzheimer's diagnostics is evolving; verify before assuming a test isn't covered. The amyloid PET claim in this episode may be outdated. If cost or coverage is the reason you or a family member is not pursuing a particular diagnostic test, it is worth a call to Medicare or your plan to get current information.

• The main practical takeaway from King's adaptation strategies is concrete: planning contingencies in advance (not improvising under cognitive load) and protecting sleep and rest without guilt. These are low-cost, immediately usable habits for anyone managing early cognitive change.