Dementia runs in your family on both sides. When did you learn you were likely to develop it?
I started noticing symptoms like forgetting things and being confused. I went to see a neurologist, who did some blood tests, and we discovered that I had the APOE4 gene, which increases the risk for Alzheimer's and other dementias. At that point, I knew I wasn't getting out of it.
You've had a career as a journalist. How has that helped you manage your condition?
I've always taken copious notes, and that habit helps me organize my thoughts and remember important dates and events, especially from my childhood.
Why did you write On Pluto, your book about living with dementia?
I felt it was part of my job as a journalist. I had to step outside myself and become a reporter chronicling his own disease. I called it On Pluto because I often feel like I live on a different planet. My mind will go blank at least 30 times a day, I see things that aren't there, and I get very emotional and enraged at times. There's an old saying: “The Lord doesn't give you more than you can handle.” But I think God has me mixed up with someone else. I don't want to sugarcoat what life is like with dementia, so I share everything.
Do you have a daily routine?
I'm up around 5 a.m. and check emails right away to find out what's going on. My mind is like an old metal file cabinet, and when I sleep someone ransacks it and the files are on the floor. When I get up, I have to put all those files back; if not, bad things might happen. Like the time I went to brush my teeth and my brain told me to reach for my razor blade. Another time, I wanted mouthwash, and it was rubbing alcohol. I also have no appetite. I gave up breakfast and lunch for Lent, and it seems Lent never ended for me. I try to go to the gym in the evening. At that time of day, my symptoms often get worse, and exercise helps counter that. I tell myself if I'm not moving forward, I'm moving backward.
What keeps you going?
Faith, hope, and humor. Faith has made me stronger, and it's why I'm still here. And Larry David [from Curb Your Enthusiasm]—he's my hero. I just love his dark sense of humor.
Speaking of dark humor, are there any silver linings with this disease?
A writer friend of mine told me my writing has improved. He said, “You're writing from your heart, and guess what, Greg, you're less of a jerk.” I wanted to give him a big hug when he said that. Anytime a good friend says you're less of a jerk, it lifts you up. A disease like dementia also gives you an opportunity to reflect on your life and try to make things better.
What sort of legacy do you hope to leave?
I don't want anyone to feel sorry for me because if they do they won't listen to my message, which is “Don't take life too seriously, because no one gets out alive.”
Listen now! Brain & Life Podcast
Dr. Daniel Correa speaks with journalist and author Greg O’Brien about his new documentary Have You Heard About Greg, a film that chronicles his journey with Alzheimer’s. Greg shares how he feels the condition has affected his life, his family’s relationships with one another, and how his career as a journalist has influenced his experience with a chronic condition.
