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The Alzheimer's Test

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Alzheimer's Test
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Writer Susan Davis's father died of Alzheimer's disease on December 1, 1992. Back then, experts weren't sure if there was a genetic link to the disease. Since then, Davis's life and scientific thinking about genetics and Alzheimer's has changed dramatically. So, on the 15th anniversary of her father's death, Davis is wondering whether or not she should get tested for the gene. She's asking herself how much she really wants to know about the years that may lie ahead.

- - -

by Susan Davis

I remember the first time I saw my father and understood that he didn't know who I was. He was in his mid 50s, thin and graying but otherwise seemingly healthy ... he looked into my eyes and said, "you're so pretty ... do I know you?"

It's difficult to describe how close I was to him, and what it meant to lose him in such a protracted and undignified way. He was a smart, energetic man, good humored in his fatherhood. He was an ophthalmologist, an eye surgeon, and he loved to tinker with broken appliances and open up gadgets.

When my brother, sister and I were kids, he entertained us with prisms and tricks of refracted light. On pleasant Sunday afternoons in our leafy Detroit neighborhood he'd sit on the front stoop of our house and conduct a informal clinic, examining the scrapes and sniffles of all comers.

When he was 43 my father began a pattern of inexplicable forgetting—birthdays, appointments, then forgetting to pick me up from dancing school and attend my brother's tennis matches. Next, it was forgetting to report a car accident and to pay taxes. Finally, his brain forgot to tell his lungs to breathe. He was 45 when diagnosed with dementia. I am 42.

* * *

This past Thanksgiving, I traveled with my husband and young children to see my mother in Michigan. She lives outside the city now, but we stopped in front of the house that I grew up in. My kids romped in the unraked leaves and posed for pictures on the front stoop.

My daughter asked to see the kitchen windows and the back door. She knows the story of the night my parents threw a fondue party in 1971, and a pot of grease caught fire. My father picked up the flaming pot and carried it out of the house, across the yard and to a strip of empty concrete. The paramedics had to use a scalpel to pry his hands from the metal. He spent 3 months bandaged like a prize fighter and an organized crew of friends, family and neighbors helped him through his daily routine.

We were told he would never regain normal use of his hands let alone operate. But he did. In less than six months he was driving and writing and eventually he returned to his medical practice.

For my daughter, my father isn't a specter, he's a magical ghost. She knows his hands defied predictions. She also knows that he was a high school track star and a legend on our block for his 50-yard dash. She knows that he built a half basketball court in our backyard, and that he gained a citywide reputation for the high level of play on that court. Boys—mostly black—loved the old, white guy they called "doc." My dad's silent mission was to keep those boys off of Detroit's streets by keeping them in our backyard.

My daughter wants to be just like him: to run really fast, to keep the ball in the air and the game going, and to walk through fire. I thrill to the ways in which my daughter is like him: analytical and exuberant, precise and witty.

But there are things my daughter doesn't know about my father—that he couldn't manage money or keep from swearing. She doesn't know that he bought a lottery ticket every day of his life or that he battled depression. And she doesn't know how he died.

Standing in front of my childhood home with my husband and my mother, watching my kids race around the mighty maple tree on the front lawn, I allowed myself this question: what if I could learn my fate? What if I am carrying the disease, what if I get the disease and I disappear over the next few years? And what if this fate is hers too?

Would I want to know it?

* * *

When my father died of Alzheimer's in 1992, medicine and science were not agreed that there was a genetic component. Now we know there is. And there's a test that could indicate if I've inherited the tendency towards the disease. But the results are not definitive. Genes do play a part, but so does environment. And, well, chance.

But now that I'm close to the age my father was when he was diagnosed, the situation feels dire and maybe I should reconsider.

I already watch myself obsessively. I make a note of every time I misplace my keys or space out a lunch date or struggle to match a name with a face.

A close friend recently asked if I was going to get tested for the Alzheimer's mutations.

I turned towards my husband. This is his decision too. If I slip into an unknowing oblivion, my husband will be the one to hold my hand and walk me through the house pointing to the window and saying, "window." And he'll have to finish raising our children without me.

My friend Daniel Pomp is a geneticist at UNC Chapel Hill and I asked him, as an expert but mostly as my friend, if I should get tested.

"I wouldn't make a recommendation to you," he told me, "but I personally would get tested."

"Why?" I asked.

"Because I would want to know. I like to have control of my environment and my life and how things are gonna happen down the road. And if I found out that I did inherit a disease like that, I would make different use of my time up until the point where the disease would effect me. I would like to say that I'd make that kind of use of my time anyway but that isn't how things work out."

I'm not like Daniel. I think I already know what I need to know.

I know that my father was here and I know that he mattered. And I know that what the disease erased from him remains in me and my siblings. And I know that he has been reborn in my daughter.

  • Music Bridge:
    Artist: Hauschka
    CD: Room to Expand (Fat Cat)


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  • By marshall blondy

    From MI, 03/02/2008

    as i heard a woman talking on weekend america a few months ago the story became very familiar. as the story ended, i waited to hear the name of the storyteller .i was not surprised to hear it was susan davis. i was her pediatrician years ago.

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