When my father kept showing up at the dentist's office on the wrong day and kept forgetting how to turn on the TV, I took him to a neurologist. The diagnosis — “probable Alzheimer's” — prompted me to enroll him in a research project at Northwestern University. He would receive free treatment, but only if I agreed to do something he no longer could choose for himself: donate his brain to the university's brain bank. I gulped hard as I imagined the extraction. Then, with my father watching but not comprehending, I signed. The ultimate payment seemed theoretical at the time, and very distant.
Two years later, the debt came due. Within hours of his death, my father's body was transported to Northwestern Memorial Hospital, where his brain was removed and examined. The autopsy report described, with cool clinical precision, the massive lesions that prevented him from remembering anything for more than a few seconds. It also explained why his emotions careened from giddy laughter to rage, followed by heartbreaking despair that left him hunched over, moaning, with his face in his hands.
The autopsy reassured me there was nothing more I could have done to ease my father's suffering. But it also reminded me that as the son of a man with confirmed Alzheimer's, I am twice as likely to develop the disease. Obsessed by this danger, I began devouring research on Alzheimer's. A cure seemed very far off.
Then, nearly four years after my father's death, I met a scientist who told me he and his colleagues had discovered a protein that appears to be the actual cause of Alzheimer's. I plowed through the dense scientific verbiage of their study, which reported work done in the lab of Northwestern professor William Klein. I snapped to attention when I read that the five brains used to demonstrate the presence of this toxic protein “were obtained from the Northwestern Alzheimer's Disease Center Neuropathology Core.”
Could my father's brain have been used to make this groundbreaking discovery? Might he actually be contributing, posthumously, to finding a cure?
I e-mailed the director of the brain bank and asked if my father's brain was used in the study. To my amazement, the reply came within the hour: “Your father's brain was one of a group of samples used by Bill Klein.”
As I stared at my computer screen, one of my father's favorite aphorisms popped into my head: “It's an ill wind that doesn't blow some good.”
His disease, so cruel and demeaning to him, might help others — including me — avoid Alzheimer's.
The Northwestern scientists used my father's brain to demonstrate that the toxic protein they have identified actually exists in people who die with Alzheimer's. They've developed an antibody that destroys this protein in mice and even reverses memory impairment. Now they're working on a vaccine for humans, so that by the time I reach the age at which my father developed signs of dementia, Alzheimer's may no longer be a threat.
I couldn't help my father in his time of suffering, but it looks like his suffering might someday help me.
Before the disease addled his thinking, my father spoke with precision and power. As a labor leader for the United Auto Workers, he made rousing speeches that boosted the morale of striking union members. Among friends and family, his words deftly conveyed humor and affection.
But as he sank deeper into dementia, he stopped making sense. I jotted down his more bizarre utterances, as though preserving the pronouncements of an oracle. “Would you say, brother, that he's here now?” he asked me one afternoon, apropos of nothing. “They're taking up the hard paying.”
I would look at my father and wonder, “What is going on in his brain?” I imagined his neurons sparking and short-circuiting as they burned out, leaving behind only the rough outline of his personality.
By donating my father's brain, I gained some understanding of what was going on in there, and I'm grateful for that.
More important, however, the donation has helped advance the understanding of Alzheimer's disease.
The ill wind that carried my father to oblivion has brought us the hope of a cure.