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Ray Farkas Stayed Awake During Brain Surgery for Parkinson's—and Filmed It

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Holy mackerel, they’re in my head!” That’s what I remember saying when I came out of my haze in the operating room. Surrounded by a surgical team and camera crews, I was strapped to a Washington, D.C., hospital table last Oct. 7, my head held in place by a brace fit for Hannibal Lecter. Thanks to local anesthesia, I felt nothing. But since my doctors needed to see my reactions during the operation, I was awake—and aware they were about to thread wires into my brain through a pair of nickel-size holes drilled in my skull.

I’m a veteran TV producer, but I’d never been on camera before. Yet here I was, narrating my own surgery for a television documentary—that I was producing—about deep brain stimulation (DBS), a procedure that may help me in my battle against Parkinson’s disease. Using a tiny probe, the neurosurgeons sent electrical charges into a targeted area of my brain to disrupt the faulty signals that had, for the past five years, caused my limbs to shake. As for the video crews, I had decided that filming my operation would make great TV. A producer will do anything for ratings! [Footage of Farkas’s operation will air on ABC’s Nightline.]

Doctors at Georgetown University Hospital warned me about the things that could go wrong with DBS, such as hemorrhaging and infections. But I was willing to try anything. Back in 1998 I noticed I was slowing down on the tennis court, losing to guys I used to beat. My legs shook, and I had balance problems. At first I thought sore muscles or dehydration were the culprits, but deep down I realized I probably had Parkinson’s—just like my father, who died in the throes of the disease at 82. A neurologist confirmed my fears. In a way, it was a relief: At least I knew what I had.

My doctor prescribed medication for my tremors, but at first I refused to take it. I’d seen what happened to my dad when he took it. It helped for a while. Before long, though, he began having hallucinations, and then the shakes returned. It was horrifying to watch.

My symptoms remained mild until last spring, when I felt like I had fallen off a cliff. I started freezing in place. You’re wanting to walk, and you can’t move. I had trouble getting food in my mouth. I started avoiding people. Despite the support of my wife, Sharon, and my children, I just wanted to be left alone.

Last March a friend told me about DBS. Doctors said I would be an excellent candidate since, at 67, I’m fairly young and my disease was in the early stages. DBS isn’t a cure—it treats the symptoms while Parkinson’s continues to advance. And because the procedure is fairly new, its long-term effectiveness is unknown, though early studies are encouraging. That was good enough for me. I asked Sharon if she was scared. She said, “Yes, but I want to go forward.”

As they wheeled me into the operating room, five cameras filmed me. The surgeons numbed my skull and began drilling. When the anesthesia wore off, they were already in my head and I didn’t even know it! Working on the documentary actually helped me cope. I was too busy to worry about my surgery. Next, the doctors inserted a high-tech microrecorder and began listening to brain waves to locate the part of my brain, the subthalamic nucleus, that had been affected by Parkinson’s. When they detected that part of my brain—it sounds like rain on a tin roof—they knew they had the right spot and stimulated it with an electrical charge. Suddenly, I could feel my legs quieting down—and my doctor could see it. It was a cool, peaceful feeling. I cried out, “More stimulator! More stimulator!” For the first time in years, I was lying still. I felt like I had gotten out of jail.

In a second surgery, the doctors placed two pacemaker-like stimulators in my chest that send charges to the brain, blunting my symptoms. I call Oct. 23, the day they switched on the devices, the first day of the rest of my life. Although I learned that I have to take a low dosage of my pills to keep my condition totally under control, I feel like I escaped my father’s fate. I can do the things people take for granted—going to dinner, taking a shower, tying my shoes. Tasks that had become hard are easy again. It’s amazing. There is no guarantee my symptoms won’t return. But I feel like I’m going to be a father to my youngest son, Andrew, who’s 15, for a long time. And maybe I’ll have a chance to beat those guys on the tennis court.

As told to Macon Morehouse in Washington, D.C.