You were diagnosed with Tourette syndrome at age 9. What were your first symptoms? I kept putting my head down at school and blinking my eyes a lot. My teachers thought I was falling asleep.
What led to a diagnosis? My twitching progressed to where I was kicking my legs out as if to stretch or dance. The last straw was when I accidentally kicked a woman in the grocery store. My mother was horrified and took me to the doctor soon after that.
How was dealing with Tourette's in middle school in the 1980s? Awful. I was put on haloperidol, a heavy sedative that slowed my metabolism and knocked me out. All I did was sleep and eat. I went from an average-sized boy with lots of friends to a chubby, depressed kid whose friends didn't want to play with him anymore.
What helped you move forward? My parents and sisters were staunch advocates for me, fighting for what I needed at school and showing me simple ways to explain my tics. My mother, who had a wonderful sense of humor about my tics, made up funny nicknames for them. She called my leg kick the Fred Astaire and my arm flaps the funky chicken. It helped me find humor in my situation.
How has a sense of humor helped you deal with stares and stigma? Being able to joke about Tourette's disarms people. When I speak in public, I tell the audience about my condition. I say, "If I make funny faces, it's nothing you said or did. If I swear at you, however, it is because of something you said or did." A small minority of people with Tourette's have vocal tics that include swearing, but I don't, so this usually gets a laugh.
You are a lobbyist for the American Cancer Society Cancer Action Network. How has Tourette's affected your professional life? Having Tourette's taught me how to fight for myself and by extension for others. I also learned how to explain my condition in a clear way. And I have a touch of obsessive-compulsive disorder. That means I'm highly organized. Those skills—advocacy, communication, and organization—make me an effective lobbyist.
What are some of the ways you manage your condition? I take clonidine, which helps mute the urge to twitch. I also try to reduce stress since it exacerbates my tics. Stretching helps too, so I avoid places like crowded subway cars or elevators that don't allow me to stretch my limbs.
How did your wife react to your Tourette's? She was more worried about the fact that I was a Yankees fan. She's a die-hard Orioles fan. Right then, I knew I was going to marry her. Her lightheartedness made it so much easier for me to open up to her. She was also more worried about my obsession with the band Phish, which I've followed around the country for years. My Tourette's? She just rolled her eyes.
