Living with Parkinson’s: Netflix Star JC Capone in New Movie ‘Reptile’ Losing the Battle but Winning the War

As life moves on, we begin to take the small things for granted. Walking to the front door, sending a text message, or posting something on social media, the simple joy of holding your children. This and more is done on a daily basis by the majority of people throughout the globe with very little thought or appreciation. What if your ability to do those simple tasks suddenly and without warning was taken from you?

For the 38-year-old JC Capone, life was beautiful. Growing up and living in Long Island New York, JC had a loving family that surrounded him and Work that left him with a sense of fulfillment. Life was on cruise control and seem to be going in the right direction

Then, one night, it all changed and JC Capone‘s world got flipped upside down. Being a mason contractor and doing heavy labor construction can leave your body bruised, battered and sore. Laying down in bed and feeling the pains of a hard days work was not a new sensation to JC.  One particular night JC‘s body was more sore than is normally expected. Suddenly in the middle of the night, he began violently shaking. The type of uncontrollable, shaking that you feel from over exposure to extraordinary cold.  JC jackhammered his body for hours and turn to his wife to say:“ I think we have a problem kid”. 

For the better part of his life, JC had been a healthy man, taking care of his body with regular exercise and eating properly. Illness and sickness had no more frequency than the average human being. But something about this uncontrollable shaking was different, something very foreign and unfamiliar.  One of the worst things that you can do is fall into the self diagnosis attitude. Wondering what’s going on inside your body and arriving at all forms of irrational conclusions. JC Capone said to himself “ I think I have Parkinson’s disease”.

Rushing to the hospital and hoping that his fears were as irrational as they sounded. With each new doctor coming in, there, eerie, avoidance of giving any medical opinion or diagnosis. Further concerned, JC. Finally one doctor walked in, looked at JC and said the words that he didn’t want to hear.

“You know you have Parkinson’s, right?” Said the doctor in a very matter-of-fact tone.  This gut shot of truth left JC in complete denial and disbelief. Parkinson’s disease is a brain disorder that causes unintended or uncontrollable movements, such as shaking, stiffness, and difficulty with balance and coordination.

Symptoms of Parkinson’s disease

Most people diagnosed with PD are age 60 years or older, however, an estimated 5 to 10 percent of people with PD are diagnosed before the age of 50.

Parkinson’s has four main symptoms:

“You run around going from Doctor to Doctor hoping to hear a different answer”.   As the symptoms began to worsen all that was left for JC to do was except his diagnosis. When the finality of life hits you over the head, it takes time for your brain to process what is going on inside your once healthy body. JC fell into a deep depression and stayed there for sometime.  The depths that a man will go through when he feels backed into a corner or nothing short of horrifying and overwhelming.

After a while, hope begins to wane And JC slowly began to accept his fate. JC watched his father well up with tears as he was fighting a cancer battle. This nearly broke JC ‘s soul to where he refused to see his father so that this man didn’t have to see his boy suffering so much. He didn’t want anybody to see him like this, and the inevitable digression of this debilitating disease locking himself in his basement for days. The only thoughts that flew through his head was this is the time that I need to end this.  To end my suffering, and those around me who have to witness. 

As if an angel came, walking through the door, JC‘s wife entered the basement as he was saying his final goodbyes.  This moment is when JC knew that he had to conquer this enemy or his battle would be lost and he would be conquered. Every great journey begins with the first initial step, those with Parkinson’s Disease know how difficult one step can be.  For JC this first step started slowly.  The mental preparation to fight an enemy against an invisible opponent who outnumbers you is a monumental task.  But never has it been so succinctly put as said by JC himself, “you have to endure lots of pain, but the bigger the suffering, the bigger the miracle.”

Inch by inch and piece by piece, often crawling out of the dark basement, JC emerged with new eyes and a receptive heart.  Once while in a corner store, he was very down and depressed when an acquaintance approached and said “Why do you look so down”.  JC quickly retorted with “I’ve got Parkinson’s”. This gentleman looked JC in the eyes and said “I was just diagnosed with Terminal brain cancer, I have six months to live.  How do you feel about your diagnosis now?”  This man was not searching for a trauma trophy but saw another human being stuck in his own pity party and had to pivot his mind in a new direction.  Feeling sorry for yourself will often kill you quicker than a bullet.  JC Capone is not that man to allow himself to be beaten without a fight.

Another blow came during the birth of his child.  Parkinson’s had ravaged his body at this point.  Here is this beautiful baby whom you love more than life itself and the nurses are afraid to hand over your child due to fears that the infant will be dropped.  “This is real pain,” JC reflects.  Childhood should be spent with innocence and laughter, not wondering if your father will be OK.  His children have learned what Parkinson’s Disease is well before a kid should know anything about this problem.  

JC was going to show the world that this disease is not going to crush his spirit.  Starting with a meager following on Instagram, JC began making small videos and posting them.  It wasn’t about his limitations but his abilities and his drive to will them into existence.  Slowly these short reels began to gain traction, and a movement was started.  People from all over the globe began reaching out to JC and felt empowerment through his inspirational words and actions.  Here was a guy who was facing the fight of his life yet he spoke of gratitude.  More gratitude was exhibited now by JC then prior to his diagnosis for the small and simple things in life.  Suffering turns the volume down on many insignificant things in life and allows one to focus on the important things.

JC’s videos caught the eye of Grant Singer.  Grant was directing a movie for Netflix called Reptile with Benecio Del Toro, Justin Timberlake, and Alicia Siverstone.  “I was getting a repeated call from a number in California that I wrote off as a spam call.  Finally after getting so annoyed seeing the same number I answered “WHAT”.  The woman on the other end was audibly surprised at such a curt answer.  Finally with calmer heads, the woman explained the movie and that Grant saw his video inspiring him to write a part solely for JC. 

As anyone picked out of the blue to be in a big movie with legitimate movie stars would do, JC was thrilled and accepted.  NOPE.  JC refused multiple times.  Grant Singer was well aware of JC’s limitations but felt that his presence and what he stood for was more important than a movie, and elevating his position will allow him to advocate for attention to be brought to Parkinson’s.  JC finally acquiesced to Grant and Reptile premiered on Netflix on September 29th 2023 to rave reviews holding the number one spot for weeks.

Nearly 90,000 people in the U.S. are diagnosed with PD each year. More than 10 million people worldwide are living with PD. The incidence of Parkinson’s disease increases with age, but an estimated four percent of people with PD are diagnosed before age 50.

Michael J. Fox advocates for research into Parkinson’s Disease.  JC puts the record straight, “this disease is a global problem affecting 10 million people worldwide and causing heartache to the millions of family members that bear witness, there shouldn’t only be one captain steering the ship, there should be thousands of captains all lending a hand to navigate this storm.

This movie Reptile and JC Capone’s attitude in dealing with Parkinson’s Disease has garnered attention on a scale that is written like a Hollywood script.  It is no longer JC Capone with Parkinson’s, its now JC Capone, actor and advocate for the cure of Parkinson’s Disease. 

Born from the darkness and the emergence into the light.  JC Capone still has a long fight on his hands, but his fight is alongside his thousands of supporters hoping to make a difference to the next generation afflicted with this horrible disease.

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