Living with APOE4: A Beginning, Not an End

Nearing retirement age, I decided it was time to take a closer look “under the hood” to make sure everything was still running smoothly. After all, I’d set an audacious goal in my 50s (half jokingly, half serious): to live to 135. And if I didn’t make it, I’d die trying! Arbitrary? Maybe. But I figured if I planned for that kind of mileage, I should at least stretch the odds in my favor.

So when a local wellness clinic advertised their “Know Your Heart” program—a low-dose CT scan designed to detect calcium deposits in the coronary arteries—I signed up. I’ve been slender and active my entire adult life (5’7”, 120 lbs), so I expected to pass with flying colors.

A few days later, the nurse practitioner called. She recommended I follow up with my primary care doctor. My calcium score wasn’t the coveted “big fat zero,” but rather a surprising 78—a concerning number for a woman my age. My husband, just two days younger than I am, had done the same test. His results were also flagged for follow-up.

My father died of a massive heart attack just shy of his 74th birthday, so heart disease was already on my radar. Still, given my otherwise healthy lifestyle, I suspected that something else—something genetic—might be at play.

So I ordered two 23andMe kits.

Cautious about what might happen with my genetic data, I registered our tests using alias names and a unique email address I’d created just for this. In hindsight, that was a smart move—especially after 23andMe filed for Chapter 11 bankruptcy in March of 2025.

Four weeks after sending in our saliva samples, our results arrived.

I printed my husband’s first. As we scanned through the health section, one line stood out:
“You have two copies of the ε2 variant in the APOE gene. This genotype is associated with a lower risk of developing late-onset Alzheimer’s disease compared to the general population.”
Everything looked good otherwise. No red flags.

Then I opened mine.

My jaw dropped. My heart sank and started pounding so hard it must have been audible in the room. My husband looked at me, instantly realizing something was wrong, as I finally managed to read the words aloud:
“We detected two copies of the ε4 variant in the APOE gene. People with this genetic result have a significantly increased risk of developing late-onset Alzheimer’s disease.”

The following weeks were a fog. I drifted between shock, panic, regret, and grief—for the life I thought I’d have and the golden years ahead that now appeared ruined. I withdrew. I didn’t want to see friends. I couldn’t find joy in the little things. I worried about not knowing who my children and grand children are one day, and I was having a big pity-party! I wondered if I’d ever feel light again.

The Sunset Epiphany

Then one evening, I sat on our patio watching the sun set through the Georgia pines. The beauty of it hit me. The sun was setting—not in gloom, but in quiet radiance. And I thought:
That’s how I want to go.
Not slowly fading in stupor and confusion, but living with intention—clear, bright, and grounded to the end.

That night, as I was preparing for sleep, I thought of a phrase that has always guided me:
“If it is to be, it is up to me.”

And with that, I had new intention, focus and a goal.

The next day was a turning point. I was determined to learn everything I could about the APOE4 gene—how it functions, why it increases risk, and most importantly, what I could do to silence, offset, or override it. I approached it the way I’ve approached every challenge in life: with focus, resolve, and the belief that mastery is possible. This Substack is where I’ll share what I’ve discovered—and continue discovering—about Alzheimer’s prevention, APOE4, and what it means to live with intention in the face of a high-risk gene. If you're here because you're on a similar journey, I hope my experience can be a roadmap—or at least a flashlight—for your own.

We're not powerless. Knowledge IS power and there are so many avenues to pursue in our quest to retain health and wellness into old age. Let’s walk it together!