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John Kolaya: How Rock Steady Boxing has Transformed My Attitude, My Parkinson’s and My Future

I am living—and thriving—in spite of a dreaded diagnosis: Parkinson’s disease. Six years ago, at age 63, I began noticing symptoms that scared me: slight shaking in my left hand when at dinner and slowly losing my ability to write legibly. As a civil engineer and wannabe architect, I always prided myself on my script and printed handwriting. And then I began to lose control of both.

My handwriting became smaller and smaller until it was illegible — even to me. My family and I shrugged off the symptoms due to lack of sleep or stress from my job, but every morning I’d try writing again.

Seemingly overnight, I was losing motor control. Fortunately, I was serving on the Neuroscience Committee at JFK Medical Center and before long, I was sitting before a JFK movement disorder specialist. After a thorough exam and a DaTscan of the dopamine concentrations in my brain, the doctor delivered the knock-out blow: I had Parkinson’s disease!

My reaction was shock, disbelief and then denial. After all, I led a very healthy and active life, was successful in my career and has no family history of Parkinson’s. Why me? While other typical non-motor symptoms crept into my life, I hid it and told only my wife. Not even my grown daughter and son knew about this neuro-degenerative disease that would only get worse with time. I don’t know if I was more embarrassed by the symptoms or afraid of how Parkinson’s would affect my future. My wife kept me sane and was a wonderful caregiver. Six months late, I finally told my children and closest of friends.    

Then I started to fall prey to my emotions. I began to grow angry, blaming myself for “allowing” this disease take over my body. Luckily, my medications seemed to help. I also learned that the progression of Parkinson’s, in my case, was fairly slow. So, I began to read everything about Parkinson’s I could get my hands on, in the process, learning that intense exercise could actually slow down the natural history of the disease.

I began to ramp up my workout routine — more kayaking, swimming, weight training, spinning, yoga and Pilates. That seemed to keep my symptoms in check, at least for a few years. But the truth was, I was working 60 very stressful hour weeks as a construction manager in New York City. I began to get the sinking feeling that my stress was becoming a major counteracting factor. 

After three years of this self-imposed fitness regimen, new symptoms began to surface. Although I had always loved mentoring high school and college students and excelled at speaking publicly, my speech was becoming soft and wispy. Worse yet, I started having difficulty with memory and articulating my words. That spelled the end of my mentoring and public speaking, which in my case, would severely affect my role as the president of a large construction company.  

Suddenly, I had more stress than I could possibly imagine, or deal with. While worrying about myself, my wife was diagnosed with a malignant brain tumor. She was given two years to live. After 44 years of marriage, her diagnosis came as a complete shock. I fell apart both emotionally and physically. 

Suddenly, our roles as caregiver reversed and our lives together were inexorably changed. My wife remained strong willed and stoic, never once complaining or showing any emotion about her fate. I know she unselfishly did this for me, our children and two grandchildren. I watched her grow weaker over the first two years, powerless to do anything but keep her comfortable and encourage her to continue physical and cognitive therapy.

As a result, I retired two and one-half years ago to care for my wife full-time. My stress worsened and I couldn’t bring myself to exercise because it seemed selfish. I began to feel worse and develop more obvious motor symptoms, such as loss of balance and increased rigidity. As I grew weaker, I realized I would not be able to care for my wife.

Shortly after my diagnosis, my son Tim became chairman of the South Florida Chapter of the Parkinson’s Foundation. He had learned about Rock Steady Boxing (RSB) and convinced me to try it. I learned that through RSB, I could change my attitude and perspective, significantly alter the progression of my Parkinson’s and dramatically improve my quality life.

In February of 2016, my wife was placed in at-home hospice care. She passed away 10 months later on December 1st. Somehow, for the last four months of her hospice care, I managed to attend one Rock Steady of Central Jersey class a week. Five weeks later my mother passed away and suddenly I had no one left to care for. I knew I had to start caring for myself.

I began to see that perhaps I could exert power over my diagnosis. I had to give Rock Steady Boxing a chance. Since then, I increased my classes to three and sometimes four times per week. I have become a devotee and advocate of the RSB “tough love” approach that encourages boxers to do more, and then keep doing more. Before I knew it, I was hooked on and inspired by the camaraderie provided by the group classes.

Eventually, my speed, strength, balance and flexibility dramatically improved. At the same time, I continued to engage in physical therapy at JFK and began twice-weekly Pilates classes, all of which has added to the overall improvement of my condition.

In my case, ‘improvement’ is an understatement. One of the most remarkable revelations that have occurred related to my Parkinson’s has not been simply to keep my symptoms in check, but the significant and extraordinary improvement of my symptoms, as measured by the entry and exit evaluations at JFK Outpatient Rehab. In fewer than five months, I’ve experienced more than a 20 percent improvement in my symptoms. In fact, according to my physical therapist, my recent exit results are the same as a patient who does not have Parkinson’s!  

Rock Steady Boxing empowers people with Parkinson’s to focus on overall fitness, strength training, reaction time and balance. The result is almost always “improvement” in a disease that is known in the medical profession as inevitably degenerative.

In fact, John Lehr, the new CEO of the Parkinson’s Foundation, has stated that the Foundation will continue to provide community grants through funds raised by Moving Day® walks across the country for Parkinson’s boxing programs for this very reason. There is a demonstrated improvement in symptoms and in mood resulting from exercise programs such as Rock Steady Boxing.

During the last year, the JFK Neuroscience and Rehabilitation Departments have set their sights on strengthening its established Parkinson’s Center at JFK Medical Center in Edison, NJ. One new aspect of the Center will be to establish an on-campus RSB affiliate, which will open in June 2017 to serve the large South Central Jersey PD population.

As my first step in furthering this process, in April I earned my Rock Steady Boxing Training Certification — together with a JFK physical therapist and a JFK exercise physiologist who joined me at the RSB Training Center in Indianapolis. RSB program director and head coach, Kristy Rose Follmar, and Assistant Coach, Christine Timberlake, were amazing and inspirational as they ran the trainees and boxers through the 90-minute sessions. In the meantime, I continue to train at Rock Steady Boxing of Central Jersey to improve my boxing and coaching skills.

Turning a negative situation into a positive experience is a critical part of learning how to deal with what life throws our way. For me, Rock Steady Boxing has transformed my life from that of a scared patient with nothing to look forward to in life, to an RSB coach and boxer, where I have the opportunity to teach my current mantra, “exercise is my medicine,” with other people in my Parkinson’s community.

I AM ROCK STEADY!

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