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A new life journey begins
Knowledge is power, right?
Yeah, especially when it’s a powerful left hook that sent me reeling, suddenly looking up, stunned and blinking at the world from a whole new perspective.
I was ApoE4, twice over. That’s TWO copies of the Alzheimer’s gene.
How is this possible? I’m smart, very health-conscious, closely following a number of health experts and their well-known adherents. I read up-to-the-minute eating/exercising/supplementing/lifestyle research. I’ve adopted various changes and routines to my life meant to ensure optimal health and longevity. I make good choices that must mean I’d get a clean bill of health. I’m in control of my destiny.
Or am I?
It took me a few minutes to get up off the ground, so to speak. My heart was racing, pounding in my ears as I stared at the 23andMe report on my laptop in disbelief:
Late-Onset Alzheimer’s Disease: You have 2 copies of the ε4 variant we tested.
That’s the “Alzheimer’s gene” variation (or “allele”), correctly written APOE-ε4. Having 2 copies increases one’s risk of developing Alzheimer’s by eleven times, by some estimates, with about a 60% overall risk.
There had to be some mistake.
I knew my mother, who had severe dementia as she approached her 78th birthday, had one ε3 allele, and one ε4 (I’ll call her a 3/4). That put her odds of developing Alzheimer’s disease at roughly double the average, or about 20%, and it gave me a 50/50 chance of inheriting one copy of the gene from her.
My father lived to nearly 91 with a raft of health problems: heart disease, vascular disease, kidney failure, arthritis… only developing moderate dementia toward the end (my mom used to say that he was “getting dotty”). His brother and sister lived even longer than he did, without dementia, so even though I never knew his ApoE status I assumed he hadn’t held an unlucky 4 in his genetic hand.
Therefore, according to my wishful-thinking math, I figured that meant I had one or none.
So much for wishful thinking.
Of course knowing didn’t change anything, at least at the genetic level. Finding out didn’t MAKE me a 4/4—I am, was, and always will be.
But the kids…
Just as I was catching my breath and baby-stepping my way back to my feet, I was caught by a sudden right hook. Oh my god, my children. All four of them. I wasn’t even giving them a 50/50 chance of escaping inheriting a 4 from me, as I might have from my mother. All 4 of my kids have at least one ApoE4 allele. That’s even worse news than my own genetic status. I wanted to throw up.
It took me 2 weeks to work up the nerve to tell my husband. It felt as if I were confessing to something horrible I’d done—some deep, dark secret I was hiding. Of course there was never any doubt that I’d tell him—but I needed some time to absorb and digest the info myself first, and have some ideas about what to do about it to present along with the problem (you know, solutions—that guy thing).
So now what?
Solutions—ha. Most scientific/medical literature discuss exactly…none. News about failed drug trials, tips for “supporting loved ones with memory loss”—tons of crap like that. There might be successful medical or genetic intervention of some sort by the time my kids get older (a miracle drug? CRISPR? alien intervention?) but now? Nothing.
Except.
Except for a book my sister-in-law had heard about last summer—Dr. Dale Bredesen’s The End of Alzheimer’s. My mom had gotten so bad so fast my siblings and I have been eager to learn whatever we can. Thank god I read it before finding out my own status (the book had, in fact, been the motivation to find out in the first place—I had been hoping to get that worry off my plate).
Dr. Bredesen has had some success in treating memory loss in early Alzheimer’s patients and touts steps you can take, if armed with the right knowledge about yourself, to stave it off. Maybe even prevent it. Steps involving lifestyle: strict diet, exercise, stress & sleep management. Steps to give your brain some of the things it may be lacking like, say, vitamin D. And steps to free it from things that may be hurting it, like exposure to mold or toxins.
I know better than to view this information as a guaranteed reprieve. Most of the book addresses Alzheimer’s disease in general, with specific references to ApoE4 only sprinkled here and there. Things do get a bit more complicated, and the advice murkier, when it comes to ApoE4. There is less research, less knowledge to draw upon.
But I’ve also since devoured information from tons of other books, articles, podcasts—and an amazing website, ApoE4.info. There’s a lot of conflicting advice out there. A lot sounds promising, but lacks human studies to back it up just yet. You have to accept that whatever you do choose to believe may not turn out to be right, and you have to be open to new information that may change your mind later. We’re all learning as we go. I certainly hope to share more of what I learn along the way.
Sadly, there really isn’t anything to offer someone in the advanced stages of the disease, and it was indeed too late for my mother, who passed away a few months ago. For the rest of us, there’s no quick or easy fix. But there actually is hope.
So yeah, knowledge IS power—but only if you apply it. Alzheimer’s doesn’t have to be my destiny—or that of my children. God help me, I will fight back.
Here I go.
Gudrun Nilsen 