The Disease

When I ask people if they’ve heard of Posterior Cortical Atrophy, they shake their heads. When I mention it’s a rare form of Dementia, or more specifically, a visual variant of Alzheimer’s Disease they nod, prematurely. As if they’re familiar with the ghost that haunts my father’s mind. They say they can relate because they know someone who knows someone who has it, and I listen respectfully as they tell their tale. As it turns out they don’t know and they can’t really relate--but I’m used to that now. I tell them I understand, and empathize, but my father’s case is different. And so begins my mantra:

My father’s memory is still in tact, but he can no longer perceive space and time. This unique strain of Alzheimer’s has robbed him of his vision and although he’s legally blind, he still shaves his face in a mirrored reflection he cannot see.

My father isn’t old. He’s 69. He looks like he’s 50 and he’s in better physical condition than most of my 30-something peers. He’s been aerobicizing everyday for the past 18 years. He’s always eaten fruits and vegetables and steered clear of red meat bad fats and processed foods. He doesn’t drink or smoke or engage in strenuous activity. He monitors his heart and watches his cholesterol. He lives in Michigan where the air is clean and water is pure. He’s done everything right. But all those things done right made no difference in the end. Looking back he should have been more concerned with drinking a cold beer outside on a spring day, or feeding the ducks by the river.

The PCA variant is not your grandfather’s Alzheimer’s Disease. It’s not the kind erases the memory of a daughter’s face, at least not at first. What makes PCA such so unusual is that it effects visual perception and motor ability before the memory goes. Meaning, unlike most Alzheimer’s patients who forget who they are before their bodies fail them; my father will retain the awareness of his deterioration.

First goes the vision, then his body, then the mind. Eventually he will forget how to breathe.
But he may never lose complete self-awareness. This notion is the hardest to take.

But for now, he’ll hold his hand out for you to shake and look you in the eye. He’ll greet you confidently and charm you with ease. He’s quick to engage with an insightful discussion of foreign policy or current events or art history and you’ll be disarmed by his wit. Most people are oblivious that my father has dementia--I should know. I was one of those people for 15 years.