About a year ago, I found myself at a lavish dinner party filled with celebrities and very wealthy people. I am a young professor at a major research university, and my wife and I were invited to meet and chat with donors at the institution. To any outside observer, my career was about to go ahead. After working intensely and passionately in science for my entire adult life, I had secured my dream job directing an independent neuroscience research laboratory.
I was talking to a businessman whose family members were affected by a serious medical condition. He turned to me and said: “You are a neuroscientist. What do you know about Parkinson’s disease?”
I caught sight of my wife, but she engaged in another conversation. I was on my own, and I paused to gather my thoughts before reacting. Because I had a secret.
It was a secret I hadn’t told any of my coworkers yet: I have Parkinson’s.
I am still at the beginning of my fascinating, frightening and ultimately life-affirming journey as a brain scientist with a disabling disease of the brain. Already it has given me a new perspective on my work, it has inspired me to appreciate life and it has allowed me to see myself as a person who can make a difference in ways that I never expected. But it took some time to get here.
first sign
I remember the first time I saw something was wrong. Four years ago, I was filling out a mountain of order forms for new lab equipment.
After a few pages, my hand became a trembling lump of flesh and bone, locked in needlessly tense stiffness. A few days later, I noticed that my walk was changing: instead of rolling my arm to my side, I held it rigidly in front of me, even grasping the bottom edge of my shirt. I also had occasional tingling in the last two fingers of my hand.
I was 36 and it was the most terrifying time of my life, even with none of these mysterious symptoms. In the span of six months, I found myself in a job I had spent 20 years preparing for, I became a father for the second time, I moved across the country to a city we didn’t know anyone in, and I was working alone.
In an empty lab wondering who left me in charge. I study how neuromodulatory chemicals like dopamine affect neural activity and behavior. And now, my own brain chemistry was rebelling against me.
I considered several possibilities. a brain tumor? dystonia? motor neurone disease? Huntington’s disease? multiple sclerosis? Was I just stressed?
My diagnosis came from a young neurology fellow at one of the world’s leading centers for the study of movement disorders. He felt more like a peer than an authority figure. He, too, spent a lot of time doing basic research in the lab and published papers in some of the same journals as mine; We could have met each other as easily as in a scientific meeting. As a result, the experience of my diagnosis was oddly collegial.
Immediately, I wondered how long I could get away without telling my colleagues. I worried that if the reviewers weren’t confident about investing in my future, I would be less likely to get the grant I needed to run my lab. I wondered if students and postdocs would be afraid to join my research group.
And, perhaps most importantly, how long will I be able to experiment – the thing I love the most. Stiffness, tremors, fatigue, jerky movements, falls, drooling, slurred speech and expressionless Parkinsonian mask. All these can be part of my future.
mind matters
I was diagnosed with Parkinson’s more than two years ago. From that day on, I’ve had a different relationship with the brain – my scientific focus for the past 20 years. Now I know what it’s like to have a brain disorder and can detect its manifestations earlier. Take the very strange symptom known as ‘freezing’.
Sometimes, when I try to raise my hand well… Note that I didn’t say can’t. There is nothing wrong with my hands. It’s still strong and able to walk, but it takes effort for me to move, even focus – often to the extent that whatever my brain is doing (talking) including doing or thinking) I have to stop. Sometimes, when no one else is around, I use my other hand to move it.
As a neuroscientist, being directly confronted with the intersection of neurophysiological and philosophical constructs of ‘desire’ is simultaneously fascinating and terrifying.
The way my mind and body battle forces me to rethink the homunculus, a generally disrespectful (among neuroscientists) little man pulling levers inside our heads, reading inputs and outputs. Sends. Everything we know about how the brain is arranged belies this image, and yet in my daily experience there is a dualism.
