I was attracting unwanted attention again. My head would not stop moving. It swiveled side to side while my body wiggled.
It was April 2014. I was trying to watch my daughter’s kindergarten teacher get married inside a beautiful church in South Orange. I couldn’t stand still.
"I have Parkinson’s," I whispered to a woman who I thought was sympathetically looking at me.
Was she looking at me? I thought she was. And if she was, of course she knew I had Parkinson’s. Anybody glancing my way could see that. I was diagnosed with Parkinson’s when I was 29. So some 18 years after the diagnosis, you’d think I was comfortable saying those words to people in that church.
But I still felt awkward, extremely self-conscious and, no matter what I might have told people close to me, I was so unhappy I just wanted to stay in my apartment on most days, when I wasn’t spending time with my daughter.
My daughter. What kind of future would I have with her? She was a headstrong 7-year-old at the time who didn’t yet grasp the uncertainty of my health. And that would drag me into a dark, depressing place.
I reminded myself that there was hope. I was going to have brain surgery to improve my quality of life: a procedure called deep brain stimulation or DBS. Surgeons would implant a medical device that uses electrodes in sections of the brain that control movement to block signals that trigger motion problems.
Having brain surgery was scary. But having Parkinson’s was maddening. There were times I had problems walking. My right leg dragged. I took medication to boost mobility, but that only caused side effects – daily periods of exhaustion, stiffness and involuntary head and body movement called dyskinesia.
When surgery day arrived, I was nervous and excited. My parents drove me at 6:30 a.m. to Robert Wood Johnson University Hospital in New Brunswick, where I would be operated on by Dr. Shabbar Danish, associate professor of surgery and director, stereotactic and functional neurosurgery, Rutgers Robert Wood Johnson Medical School and Robert Wood Johnson University Hospital.
I had met Dr. Danish weeks before at a seminar about DBS and knew I was in good hands. Since his arrival at Rutgers Robert Wood Johnson Medical School in 2009, Dr. Danish had performed 147 device implants. The youngest to have the surgery was 32, the oldest, 85. When I told him I was thinking about the surgery for myself, he gave me cell his phone number, which I called twice, and got reassuring answers to my questions.
On May 6, 2014, Dr. Danish led a team of 10 surgeons, nurses, anesthesiologists, a physiologist and surgical technicians in the operating room. The team prepped me for two hours, attaching a metal head frame to my skull to keep my head steady. They created a brain map and drilled two small holes in my skull. Then for the next three hours, they kept me awake. Though numb and groggy, I needed to be able to respond to verbal and movement tests to see if they were implanting the electrodes in the best possible location. At one point, Dr. Danish asked me to sing my favorite tune. I sang a Depeche Mode song.
The surgery required implanting extension wires below my scalp and under my neck, which would connect my brain to a battery-powered stimulator, called an internal pulse generator. Similar to a pacemaker and about the size of a pocket watch, the generator was surgically implanted during a same-day procedure in my chest a week later.
During the first few weeks following surgery, I could detect a subtle impact. I felt better. Within two months, my periods of dyskinesia stopped. My head no longer moved uncontrollably. My daily periods of stiffness and fatigue and walking difficulties diminished. I reduced my medication and whittled away at the side effects the medication caused.
Now, three years after the procedure, my life continues to improve. I became more outgoing and positive about life, and met and married an incredibly funny, witty woman from Jersey City who loves music and art, and sees and appreciates life as I do.
I learned exercise is an effective way to slow the progressive movement disease. So I try to exercise five mornings each week for three hours, riding a stationary bike, and taking yoga, Pilates, Zumba and other classes at the West Essex YMCA in Livingston and Jewish Community Center Metrowest in West Orange.
Statistically, I am far from an anomaly. More than 10 million people worldwide are living with Parkinson's disease. The incidence of Parkinson's increases with age, but an estimated 2 percent of people with PD are diagnosed before the age of 40, according to the National Parkinson Foundation.
The DBS procedure on one side of the brain was approved by the U.S. Food and Drug Administration in 1997 to treat tremors. It was approved for both sides of the brain in 2002 to treat Parkinson’s symptoms.
Two weeks after surgery, I met with Deborah Caputo, an advanced practitioner nurse who coordinates the Deep Brain Stimulation Clinic in New Brunswick, and Dr. Eric Hargreaves, instructor of neurosurgery and clinical deep brain stimulation neurophysiologist at Rutgers Robert Wood Johnson Medical School and Robert Wood Johnson University Hospital who is on Danish's team and was integral in the surgery. My neurologist, Dr. Daniel Schneider, was on hand as well.
They explained the game plan to me, how medication would be reduced over time and how the electrodes implanted in my brain would affect my movement. I was given a handheld wireless controller to increase and decrease the DBS system settings. The procedure is not a cure and the stimulation settings can be adjusted as my condition changes. I see Deborah and Dr. Hargreaves every two to three months, and we are close. They even came to our wedding in July, and I sent Dr. Danish a text with a photo of my wife and I that day.
Dr. Danish responded, texting, “It’s pics like this that really make it all worth it.”
I wish I had had the surgery years ago. I’m not alone.
“Most patients tell us after the surgery they wish they had done it sooner,” Dr. Danish said. “But it is a difficult decision to make. Everybody has to get to that point in their lives where they want to undergo something like this. It is a scary thing until you go through it.”