Health & Wellness

How Neurosurgery Helped Me Cope with Parkinson’s Disease

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

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 Like

Sign Up for E-News

Piscataway

LD17 Candidate for State Assembly Robert Quinn: Candidate Statement

October 16, 2017

            It is my desire for the public to know several important points about my candidacy, which they may take into consideration when determining who to vote for: 

I have been a resident of Franklin Township for 12 years. Born in North Plainfield I have lived in New Jersey most of my life. 
I am the father of two. My children, Terrence, ...

Alexandra Lopez for Piscataway Township Board of Education

1. Why are you running for re-election to the Piscataway Township Board of Education?

I have been a resident of Piscataway for 18 years. I specifically chose Piscataway as a place to raise my family because of its rich diversity. As a Latino woman, married to a Latino man, we made a conscious decision to ensure that our children were raised in a community that represented our values. In 2011, ...

Dr. Tom Connors for Piscataway Township Board of Education

1. Why are you running for re-election to the Piscataway Township Board of Education?

I have been a resident of Piscataway for 29 years.  I have been a member of the Board of Education since 2008.  I am running for re-election because I believe in public education.  I grew up under difficult financial circumstances and getting a good public education was key to my success.

A Call for All Library Supporters to Vote "Yes" on Nov. 7

October 16, 2017

Dear Editor:

As a New Jersey resident and strong supporter of our local library, I urge all New Jersey citizens to vote “YES” on Tuesday, November 7 for the NJ Library Construction Bond Act, supporting libraries across NJ. 

Libraries are increasingly becoming the social hubs of our communities.This act  authorizes New Jersey to issue ...

LD17 Assembly Candidate Robert Quinn: The Age of Defiance in Politics

Dear Editor,

                Having trudged across this political terrain for over 18 months I see we are nearing the end. I’ve tried to show you something new and different. To return to an era where we are not so obsessed with clinging to these labels we call ...

South Brunswick Police Offering Reward For Gas Station Shooting Information

October 16, 2017

SOUTH BRUNSWICK, NJ – Police, in conjunction with Middlesex County, are offering a reward for information regarding Sunday morning’s shooting during a botched robbery at a Route 27 gas station that left the attendant in serious condition.

In a press release Monday afternoon, Chief of Police Raymond Hayducka said the department is offering a reward for information about the robbery ...

Obituaries

Kenneth H. Stewart, 85, died Monday, October 9, 2017 at the Center of Hope Hospice in Scotch ...
Read more
James Faraci, 96, passed away on Friday, September 15, 2017 at Brandywine Living at Middlebrook ...
Read more

Clara Barton Local History Day

October 17, 2017

The Clara Barton Public Library has partnered with the Metuchen-Edison Historical Society to bring back by popular demand, Clara Barton Local History Day on Saturday, November 4, 2017 from 10am-3pm.

The event will consist of a 30 minute interactive presentation at 10:30am and 1:30pm. Attendees will also have the opportunity to browse through and view old photographs, maps, displays, and other ...

Progressive Leaders To Hold District 17 Town Hall Without Their Legislators

PISCATAWAY, NJ - Leaders of statewide progressive groups will join Legislative District 17 residents for a town hall to discuss a legislative road map that district legislators can follow to support a working families platform.

Senator Bob Smith, and Assemblymen Danielsen & Egan have refused to attend a "Blue 40" Town Hall spearheaded ...

Friend's of the Library 2017 Fall Book Sale October 24 - 30

Book Sale Location: Kennedy Main Meeting Room

Tues. Oct. 24:     4-6 pm Table Set-up, 6-9 pm Book Set-up
Wed. Oct. 25:      9 am till done Book Set-up; 6:30-8:30 pm Preview Night
Thur. Oct. 26:     10 am - 8:30 pm Book Sale
Fri. Oct. 27:        10 am - 4:30 pm Book Sale
Sat. Oct. 28:       10 am ...

Rutgers student sexually assaulted in College Avenue dorm room

NEW BRUNSWICK, NJ - A female student affiliated with the university was reportedly sexually assaulted when a man randomly walked into her dorm room on October 13, according to police.

The assault happened at around 4:30 p.m. in Mettler Hall on College Avenue, Rutgers police said in a university-wide crime alert.

The victim was sitting in her room with the door open, when an unknown man ...

Upcoming Events

Thu, October 19, 7:00 PM

State Theatre New Jersey, New Brunswick

Families Like Yours

Arts & Entertainment

Thu, October 19, 7:30 PM

Piscataway Public Library, Piscataway

Country Line Dancing

Arts & Entertainment

Fri, October 20, 8:00 PM

State Theatre New Jersey, New Brunswick

Tango Buenos Aires

Arts & Entertainment

Sat, October 21, 9:00 AM

South County Park, Lambertville

Flemington Speedway Historical Society Annual Car ...

Arts & Entertainment Other

Sat, October 21, 9:00 AM

South County Park, Lambertville

Flemington Speedway Historical Society Annual Car ...

Arts & Entertainment Other

Christie, Booker, and Baraka show strong support for Newark to be next Amazon HQ

October 17, 2017

A bipartisan trinity of New Jersey politico firepower assembled in downtown Newark to shoot the first salvo needed to score a major economic triumph for New Jersey's largest city: the construction in Newark of the new corporate headquarters for Amazon, the world's largest online retailer.  

All three of the prime politicians in place inside Rutgers Business School on ...

Want to Take Your Business Global? New Jersey Businesses Eligible for Grant Funding

October 11, 2017

Are you a New Jersey business owner who has already realized the potential of a global market or an entrepreneur seeking to increase sales and profit by taking your business worldwide? 

The New Jersey Business Action Center (BAC) has been awarded a $606,151 State Trade Expansion Program (STEP) grant from the U.S. Small Business Administration to help New Jersey companies gain access to ...

The Mommy’s Review - Welcome back, water bottles!

Well, the kids are firmly back in school, and one of my priorities this year is for everyone to stay dry! No, not in the potty training sense! What I mean is that I’m tired of taking out soggy folders and wet assignments from their backpacks! I can’t tell you how many times my kids came home with wet lunchboxes and school bags this past school year. Their reusable water bottles just ...

Excess Body Weight Associated with 13 Different Cancers

In a review of over 600,000 people with cancer, the Centers for Disease Control and the National Cancer Institute found that 13 cancers representing 40% of all cancers, were associated with obesity. The 13 cancers include: cancer of the brain, esophagus, thyroid, gallbladder, stomach, liver, pancreas, kidney, ovaries, uterus, colon, postmenopausal breast cancer and multiple myeloma (cancer of ...