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For Parkinson’s disease, a remedy under my skin

Mr. Roboto I’m not. But Deep Brain Stimulation has given me hope — and more than a little affinity for the mechanical creatures that transfixed me in my youth.

A patient shows the lump from the deep brain stimulator, a pacemaker-sized device implanted below his left clavicle.Michael S. Williamson/The Washington Post

When I was a child, there was nothing I enjoyed more than a good scare. Give me a werewolf or a vampire on the warpath and a bag of popcorn, and I was the happiest of campers.

But my favorite creatures were robots. Shiny, metal, mechanical, more subtle than your everyday fiend. Robots don’t reveal their potential danger. Maybe it was all those bolts. Robots held themselves together, rarely running amok unless they short-circuited. How they’d lurch from one side to another, their jerky movements, their monotone voices: They were entertaining and endearing.

And then a year ago, to my shock, I began to identify with robots in a much more profound way. My doctor recommended me for Deep Brain Stimulation.


Five years ago, my wife noticed that I was shuffling down Commonwealth Avenue, my arms stiffly at my side. Over time, tremors developed in my arms, jaw, and legs, and my voice became gravelly. And then the tremors traveled to my hands.

Earthquakes shake things up. So do bodily tremors. I had Parkinson’s disease, or “Shaking Palsy,” as Dr. James Parkinson named it in 1817.

I couldn’t hide my shaking. At Starbucks, I’d glance around, pretending to read the blackboard, stick my hands into my hoodie — pockets are great for hiding tremors — and feign nonchalance. I couldn’t help wondering if people noticed.

New dilemmas faced me. There was the question of asking for help when trying to insert a credit card to pay. When making change, dimes were particularly difficult to pick up.

I resented having to assure the compassionate barista that I didn’t need help to get the coffee to a table without a spill, and I resented that I did need help and should have just accepted it. For so long, I had been on the other side: helping the proverbial old lady cross the street, collecting for the local food bank, taking in rescue dogs.


Parkinson’s symptoms are caused by low levels of dopamine in the brain. The drug Levodopa helps replace the missing dopamine. After four years, though, it stopped working for me.

Fortunately, I was a candidate for Deep Brain Stimulation (DBS), in which electrodes are implanted in the brain. DBS was first used in 1957 to treat Parkinson’s. More than 200,000 patients later, DBS is the most commonly performed surgical treatment for Parkinson’s. A pacemaker implanted under the skin of the collarbone controls the amount of stimulation sent to the electrodes by a wire leading to the brain.

The prospect of having 3-inch holes drilled into my skull and electrodes controlling my brain was daunting. It was also, it seemed, the only choice. Once I accepted this, I found that it gave me something else: hope.

Last August, I lay stretched out on a gurney in an operating room, surrounded by nurses and neurosurgeons. Ella Fitzgerald’s soothing, familiar singing, piped in on speakers, was no match for the shrill, grating sound of a drill boring through bone into my skull. The surgery went well, and three weeks later, a battery was implanted under my collarbone.

Every 10 days, I work with a nurse practitioner who sits at a computer and uses a mouse to adjust the intensity of the electrodes.

The first time I worked with her, I glanced at my wife and announced that I was beginning to feel not only excited, but frightened. I felt that I might break down in tears.


As the nurse practitioner prepared to activate the system, she nodded reassuringly in my direction. “Repeat this sentence after me,” she instructed.

I took a deep breath. “It is a sunny day in Boston,” she said. But I couldn’t. The words came out slurred and garbled. Speech had deserted me. My world had turned upside down. I began to cry.

The nurse practitioner said, “I’m in control,” and fiddled with dials. As she tapped the keyboard and the mouse, my panic was turning into desperation. But then, suddenly, my speech returned. It was at once unsettling and a relief.

“Walk down the hallway,” the nurse practitioner said. I gamely strolled until, boom, my legs and arms turned to lead. I couldn’t lift them. She was at it again, adjusting the intensity of the current. A moment later, I was walking — with a spring in my step.

How extraordinary that with a certain amount of voltage directed at the right place in my brain, an external force could control my movements. No longer did I feel wholly at the mercy of Parkinson’s. Now there was a way to moderate my symptoms. I could feel more like the person I used to be.

Some who hear my story express astonishment, followed quickly by trepidation. As if handing control to a device means relinquishing it and succumbing to the mercy of a machine. I admit that I still struggle to accept that I am no longer in complete command of my body.


Will I be like the 72.5 percent of those with Parkinson’s who undergo DBS and experience fewer tremors, shuffling, and stiffness? Will it be easier to walk? Will I be less likely to fall? Will I fall but find it easier to get up? I have yet to answer these questions. It could take another month or longer, even a year, to complete the tweaking and fine tuning so that I get to the optimal dose of current that will keep my speech and my step smooth.

In the meantime, my fright is tempered by excitement. I am dumbstruck. So much is happening, so much that I never could have imagined. I may not be a robot, but a part of me happily identifies with one.

Ted Sutton is a writer in Cambridge.