Rutgers University

How Neurosurgery Helped Me Cope with Parkinson’s Disease

424ef2dbba95044dabc2_Swayze_450Vertical.jpg
Three years after undergoing brain surgery at Robert Wood Johnson University Hospital to diminish symptoms of debilitating Parkinson's disease, Bill Swayze says that his life continues to improve. Credits: John O'Boyle
424ef2dbba95044dabc2_Swayze_450Vertical.jpg

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.

Sign Up for E-News

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.”

TAP Into Another Town's News:

You May Also Be Interested In

Sign Up for E-News

New Brunswick

The Jaffe Briefing - February 22, 2018

OUR TAKE ON THE NEWS IN NEW JERSEY

TRENTON - If New Jersey raises the sales tax back to 7 percent, will anyone notice? That's the big question from New Jersey Policy Perspective, which questions last year's gimmick that cut the sales tax rate to 6.625 percent. NJ 101.5reports that tax cut equates to $2 a week in "savings" for middle-class families. Meanwhile, this ...

The Jaffe Briefing - February 21, 2018

OUR TAKE ON THE NEWS IN NEW JERSEY

ON THE HIGHWAY - Authorities were frantically looking into a "mystery tar" that appeared suddenly on cars driving along I-295 in South Jersey, causing tires to gel with the road. They quickly realized that a stretch of the highway in Salem County was smeared with liquid asphalt, leaked from a tanker and causing dozens of cars to get ...

The Jaffe Briefing - February 20, 2018

OUR TAKE ON THE NEWS IN NEW JERSEY

STATEWIDE - Jittery parents are sending their jittery kids to jittery schools this morning, as classes resume after a President's Day weekend filled with wall-to-wall news coverage about gun safety. School districts statewide have been reporting threats - all thankfully not credible - as district leaders are on the highest alert. East Brunswick, for ...

The Jaffe Briefing - February 16, 2018

OUR TAKE ON THE NEWS IN NEW JERSEY

E STREET - While a tired nation is demanding gun control (yet again), Springsteen guitarist Stevie Van Zandt is having none of it. No stranger to political opinions, the New Jersey icon tweeted "What happened to us? We are averaging 2 school shootings per week AND WE DO NOTHING ABOUT IT!" Many tone-deaf politicians on Capitol Hill ...

The Jaffe Briefing - January 15, 2018

OUR TAKE ON THE NEWS IN NEW JERSEY

TRENTON - As state lawmakers are set to announce a bill at 11 a.m. to decriminalize pot - an issue that has consumed the Statehouse -  the Record is reporting on an often-ignored issue: the state's ridiculously antiquated liquor laws. For example, supermarkets in the state can only have up to two liquor licenses, stemming ...

The Jaffe Briefing - February 14, 2018

OUR TAKE ON THE NEWS IN NEW JERSEY

ON AIR - Gov. Phil Murphy had his very first "Ask the Governor" monthly program last night. He appeared on News 12 New Jersey to field your questions about all things New Jersey. Impossible to recap an hour segment. Of course, we will try: New Jersey should be a better place to retire. The state pension mess will be solved.

Trees Have Sex? Rutgers Researchers Have All the Answers

February 22, 2018

NEW BRUNSWICK, NJ - A few years ago, Rutgers researcher Jennifer Blake-Mahmud was working on a botany project in Virginia when colleagues pointed out a striped maple, a common tree in the understory of mountain forests from Nova Scotia to Georgia. 

 

“They told me, ‘We think it switches sex from year to year, but we don’t know why,’ and I said, ...

Rutgers Union Rally Planned Friday for $15 Minimum Wage

New Brunswick, NJ - On Friday, February 23, student groups, a coalition of Rutgers unions, and representatives from campuses across the nation will hold a rally and march on College Avenue to demand a $15 minimum wage.

The action, initiated by the Rutgers chapter of United Students Against Sweatshops (USAS) and the Rutgers American Association of University Professors - American Federation of ...

RU Students Rejoice: Starbucks Reopens at The Yard@College Avenue

NEW BRUNSWICK, NJ - In what many consider to be the biggest news of the day on the Rutgers University campus, the Starbucks at The Yard@College Avenue has once again reopened.

Officials with the New Brunswick Development Corp. reported this morning that the popular coffeehouse is open "for good."

The Starbucks at The Yard@College Avenue, located at the corner of College ...

Valeski: Placing Police Officers in Schools was Planned for Two Years

February 21, 2018

EAST BRUNSWICK, NJ - In the midst of a media firestorm Tuesday, Dr. Victor Valeski, East Brunswick Superintendent of Schools, fielded questions from local and national journalists regarding the placement of armed police officers inside each of the district's K-12 buildings.  The move seemed to many as a "knee-jerk" reaction to the fear generated by the massacre of ...

Shouts of Racial Slurs Bring Police to Sparta Theatre

February 21, 2018

SPARTA, NJ – Sparta police were called to the New Vision Sparta Theater on Sunday night because of a woman shouting slurs in a screening of Black Panther.

Former New Jersey Assembly candidate Michael Grace was in the theater when two people started yelling racial slurs including “look at these ‘n-word’” and “can you believe these ...

OPINION

Letter to the Editor: Low-Income Families Who Need Safe Cribs Have Nowhere to Go

February 15, 2018

One recent email came from a pastor in East Orange, sharing the struggles of a young couple who have no safe place for their baby to sleep.

Then, there was also a phone call from a Newark hospital, making its fourth request in two years, as well as a frantic text from Puerto Rico, for a family who lost everything in the hurricane.

They all pleaded for the same thing: A safe crib for a ...

Somerset Patriots Sign Frontier League All-Star RHP Randy McCurry

February 17, 2018

The Somerset Patriots have announced the signing of right-handed relief pitcher Randy McCurry for the 2018 season.

“I’m excited to play in the Atlantic League this year,” said McCurry. “It’ll be a transition for me but I am ready to face some really good competition and help the team win.”

McCurry enters his first season with the Somerset Patriots and ...