By Kate Zernike
Parkinson’s disease was not the end I wanted for my father. But the decision he made to donate his brain for science has made it more bearable.
When he was sick, I wanted to take care of my father the way he had taken care of me. I wanted him to feel safe, and loved, and to be able to die free of any sadness or regrets about what he had or had not done. I could not ensure that; no one could. But the act of donating his brain after he died made me feel that we were giving him a way to continue to make a difference even after he had left the world.
It seemed a fitting legacy project. As a physicist, my father’s life was about asking questions, poking holes — whether in his lab or around the dinner table with us. Even as dementia claimed more of him, his boyish curiosity remained his hallmark.
He himself had chosen to make the donation. We joked after his death, in the kind of bad pun he would have appreciated, that it was a “no-brainer.”
He did not need to be told that there are relatively few brains available for study, or that doctors can only properly diagnose Parkinson’s from a person’s brain after death. He was a scientist, and if there was information to be learned, he thought it should be explored. This was the way he approached his disease.
After he died, we watched a video clip from early on in his treatment, where he was showing his neurologist how his hand shook when he held it one way, but not another. You could see the same twinkle of inquiry, the same delight, in the way he explained to us how, say, something in physics could be precise but not necessarily accurate. Watching the video, his neurologist remarked that it would have been an insult to my father not to donate his brain.
My father’s decision, though, gave great solace to me. First, I was proud of him for doing something so selfless. But also, the autopsy was able to not only confirm the Parkinson’s diagnosis, but to show how the disease had changed his brain, and his behavior, in the last months of his life. The tests revealed a score of six, the highest score on the scale of the disease progression. Hearing this reassured my family that we had done everything we could, that he had fought the disease until its natural end. The hallucinations and changes in his behavior had not been some freak personality mutation; his loss of memory and mobility had not meant he wasn’t trying hard enough, or that we weren’t doing something to help him. It was the disease.
In the two years since, the experience of the brain donation has allowed my father to be more alive to me — more Dad — than he was at his sickest. I talk to him all the time, and when I do, it is his brain, the emblem of his wisdom, that I appeal to. When the rest of the family gathered for a birthday celebration last year, I paused briefly to consider that one of us was missing. But it also happened to be the day that his brain pathology was being done. I quickly changed my frame of reference: my father wasn’t missing; he was working.
Sometimes I drive along the Hudson and nod to him at Columbia University Medical Center, the way he taught us as children to look under the George Washington Bridge for the Little Red Lighthouse. I imagine him busy there in the brain bank, answering questions the way he answered so many of mine growing up. He is in a lab, where he spent so much of his career. I think he is happy.
I have been told that many family members do not want to subject their loved ones to the surgery required to donate the brain. They feel they have suffered too much. For me, by contrast, donating his brain was making sure that my father’s suffering mattered. He hated this disease, and I hated it on his behalf. But when he could no longer fight it, we could help him fight it for someone else.
Kate Zernike is a national correspondent for The New York Times.