During Parkinson’s Awareness Month, A JFK Johnson Patient Advocates

To John Kolaya, living with Parkinson’s disease means facing each challenge with determination — and the best that medicine and science can offer. The retired civil engineer from Lavallette stays engaged in Parkinson’s programs that strengthen his fitness and balance, optimize his vocal abilities, and improve his everyday life.

During April, Parkinson’s Awareness Month, Kolaya, a Parkinson’s Patient Advocate at Hackensack Meridian JFK Johnson Rehabilitation Institute, is accelerating his efforts to spread the word about Parkinson’s resources.

“When I was diagnosed, I was angry and frustrated,” said Kolaya, a civil engineer. “I decided to do everything I could to redirect my skills to advocate for people with Parkinson’s and share everything I learned.”

The 75-year-old’s activism comes as research showing the wide-ranging benefits of rehabilitation continues to accumulate. Exercise and therapy have been linked to slower progression of the disease, better brain health and balance, and improved overall function.

Kolaya retired after 45 years of managing large heavy construction projects in New York City and the tri-state area. After his diagnosis, Kolaya, a retired civil engineer, established support groups and started Moving Day New Jersey, a fundraiser. He became a Rock Steady Boxing coach and started an affiliate at JFK Johnson. He also collaborated with JFK Johnson's Speech and Audiology department to start up LOUD CROWD, which supports vocal strength.

Kolaya was among the first people to complete the intense, two-week JFK Johnson Parkinson’s Wellness Program, which began last year and provides three hours of therapy each day, such as physical, speech, occupational and rehabilitation therapy. A Physical Medicine and Rehabilitation physician leads a team of specialized therapists and neurologists. The in-patient program optimizes each patient’s medications. Family members and caregivers, meanwhile, are provided with education and training.

“You leave feeling strong and steadier,” Kolaya said. “It’s so valuable.”

A research poster presented at the Association of Academic Physiatrists’ Annual Meeting in February focused on the first two patients in the JFK Johnson Parkinson’s Wellness Program. The research poster showed that both patients improved significantly on their ability to walk; ability to walk up stairs; and ability to dress themselves. Their vocal intensity also improved.

Since then, about 20 other people living with Parkinson’s disease have completed the program.

“We’ve seen improvements in each person who has completed the program,” said Steven
Markos, M.D., a specialist in Physical Medicine and Rehabilitation at JFK Johnson. "Walking distance and stability, freezing, stairs, transfers, independence in the bathroom, speaking volume and clarity, caregiver support, management of medical comorbidities, and numerous other domains are improving among our patients completing this program.”

The multidisciplinary program is designed for people diagnosed with Parkinson’s disease who are not acutely ill or severely disabled, but who struggle greatly at home with the symptoms and lifestyle changes that Parkinson’s disease brings. Many are at risk of falls.

“The goal is to help people living with Parkinson’s in the community. Maybe they are less steady and can no longer dress themselves. They may be getting more rigid, and having more tremors,” said Sara Cuccurullo, M.D., Medical Director of JFK Johnson Rehabilitation Institute. “Their physician might say, ‘Instead of waiting until you have a bad fall, let’s get you in this program.’ We optimize their medicine. We get them in PT, OT and other therapies and we send them home stronger and better able to function at home.”

For Kolaya, the program is incorporated with continued therapy and exercise. He also participates in ParkinSINGS. Led by choir director Alyson Chananie, a speech pathologist, Kolaya joins about 25 others with Parkinson’s who exercise their speech and voice mechanisms. A concert is planned for April 19 at Metuchen High School.

Kolaya says he wants to live his own best life while also helping others. He shares a JFK Parkinson’s Advocate business card that says, “WE WILL NEVER QUIT”