Bringing Parkinson’s awareness to the big screen: John’s story

How John Became an Unlikely Celebrity

When John Capone was first diagnosed with Parkinson’s disease (PD) at the young age of 39, he never imagined acting in a movie with A-list celebrities. The news of his diagnosis was tough to handle at first, and he quickly

John Capone

became overwhelmed by depression and anxiety. But this tough guy was determined to not let PD get the best of him. With the help of his friends, family, faith, and the power of social media, he chose a more optimistic path.

With six years of life with PD under his belt, John (now 45 years old) inspires others with his motivational and no-nonsense messages, and in an interesting turn of events, these messages gave him an unexpected opportunity of a lifetime.

In his effort to increase awareness of young onset Parkinson’s disease (YOPD) and support those who are having a tough time, John started posting messages of optimism and hope to others living with this disease on his Instagram account. His positive messages and unique delivery caught the eye of director Grant Singer who cast him in a movie – playing a character with Parkinson’s disease. Reptile will be released in 2022.

Recently, John sat down with me over Zoom to share his story about increasing awareness of PD and living life with YOPD.

Q: Tell us about when you were diagnosed with Parkinson’s disease.

A: Six years ago, I was 39 years old and owned a construction business. I always did a lot of heavy lifting, and aches and pains were part of my daily life for as long as I can remember. When I was a little stiff or when I had a little tremor, I said to myself that it was because I was lifting too much or working too hard. They probably were signs that I had PD, but I did not pay them any attention, and I did not think that there was anything wrong.

One night, I had very intense tremors that I could not stop. I was very scared and went to the Emergency Room. I was admitted to the hospital and had a lot of testing – MRIs, EEGs. No cause for the shaking could be found. During the hospital admission, I was lying in the bed with my wife sitting next to me. One of the doctors poked his head in and said, “You know what you have, right?” I said that no one had told me what I had. This doctor said, “You have Parkinson’s disease.” And that is how I found out my diagnosis.

Q: What happened after you were diagnosed?

A: My wife and I went to lots of doctors, and they all said that I had Parkinson’s. But I was in denial. I thought that it just couldn’t be – that the doctors had to be wrong. I kept thinking that Parkinson’s doesn’t run in my family, so there was no way that I had it. I never even heard of Parkinson’s besides a few celebrities that I knew had it. I was in denial for about six months to one year.

After that point, reality hit and I began to accept the situation. Then a major depression with anxiety kicked in. I think the depression and anxiety (as I start talking about it, my hands start to shake more) is the worst part of this disease. It attacks you not only physically, but mentally too. And you need your mental strength to fight the disease.

I was diagnosed six months after I was married, and I told my wife after diagnosis: “I understand if you leave. This is not what you signed up for.” But she stuck by me. The real warriors in this battle are the care partners – the ones who help you get dressed in the morning, help you take a shower, help you get through the day. They don’t get enough credit.

Q: How are you dealing with your depression now?

A: I don’t think that you ever beat depression. It sits on your shoulders and waits for you to fall down, and then comes right back on top of you. I continue to battle it every day. But I was able to get a hold of it and control it because I started to accept the disease. I started to take a more active approach instead of having a defeatist attitude. I started to say: “OK, I have Parkinson’s. Let me begin a new fight, a new chapter.”

I am very fortunate that I have a close family and great friends who give me a lot of support. I have a lot of faith in God.

Q: What motivated you to start posting on Instagram?

A: I use Instagram to try to help others who are battling a disorder. It doesn’t have to be Parkinson’s. If there is someone out there who has fallen into a deep depression and might not have someone in their lives to help them, maybe my story will resonate with them. That’s why I go on Instagram and YouTube every morning and record messages of hope and I say: “There are people out there who love you and care about you. And if you don’t think you have people like that in your life – then know I care about you and I am here for you. We can fight this battle together.” It is important for people to know that there is someone out there who cares.

What I will tell people with Parkinson’s is: don’t give up on your dreams. There are a lot of people out there who will say “You have Parkinson’s. You can’t do that.” They will step on your dreams, and you will start to believe the negativity. When I first went on Instagram, people said to me that I was crazy. But, in the past year and a half since I started posting, I have posted 480 times. I like to send out a post about once a day. The day that I started posting to Instagram was the day that I really felt control and ownership over my PD.

If there is a day that I don’t post, I get messages from people asking if I am OK and asking for that day’s message. There is so much negativity in the world; I use my Instagram posts to try to combat that. I tell people that if you want to ruin your day, just turn on the morning news. I want to have people start their day with a positive message: “It is going to be a great day.”

Q: What do you want people who have young onset Parkinson’s disease to know?

A: When you go on the internet and type in Parkinson’s disease, you mostly see information about advanced symptoms. That is the mistake that I made, and it sent me into the depression that I described. It even made me think of suicide.

I would like to change the face of the disease. I want people to know that the disease can affect young people. And instead of focusing on the debilitating symptoms, focus on people with PD who are active, who are exercising, and who are not letting the disease beat them.

I have two babies at home, and I am struggling with the disease while raising a family. I am also struggling with the financial implications of not being able to work anymore while trying to raise a family. That is all very hard, but other people who are young and have PD are facing similar issues and my story may speak to them.

I also want to say – don’t be embarrassed by your disease. Don’t hide it. We are selected – I am not always sure for what. But we are the chosen few!

Q: What do you want people who don’t have PD to know?

A: If you are interacting with someone with Parkinson’s, have patience. We want to do things, we want to help out, and we want to pitch in, but it is almost like we are trapped in our own bodies. Our mind wants to do so much, but our bodies limit us. What I find is that there is not enough awareness of PD among the general population. I want to help grow that awareness – for it to be more prominent.

Q: How has Parkinson’s disease affected your job?

A: I owned and operated a construction company. About six months into the disease, my anxiety was out of control. I went on estimates for potential jobs and when the customers opened the door, the first thing they saw was the tremor. I felt like the first thing I had to do was explain my tremor. The business just wasn’t working anymore, and I had to shut it down. This disease not only hits you physically and mentally, but it takes away the things that you love to do. And construction was what I loved.

The disease also hits you financially. If you need to go on disability when you are young, you have not paid into the system for very long. This means that when you apply for social security disability, you get the bare minimum. You run the risk of losing your house, your lifestyle, your car. I don’t mean you need a lavish lifestyle, just a normal life. The amounts that are given for disability are out of touch with reality. There is no way that a family can live off the disability payments that are provided. That is a very hard part of my illness. There should be a different formula for those who get sick at a young age and with a young family.

People who are battling a disease are going through a very hard time and finances should be the last thing that they should be worrying about. Care partners who are standing by the side of those with chronic illnesses are the biggest warriors and they should be compensated for their work.

Q: Do you work together with your doctor on decisions about your treatment plan?

A: I am the worst patient in the world. I am stubborn and thick-headed. I applaud my doctor for putting up with me and for the patience that he has with me. We work well together. I do take a whole bunch of medications three times a day, but I don’t take as much as my doctor recommends. But I do believe that with exercise, meditation, an active lifestyle, and a healthy diet, you can take more control of the disease. There is no quick fix for this disease. A trainer once said to me: “Get comfortable with being uncomfortable.”

Q: What was your experience when you disclosed that you had Parkinson’s disease to your family, colleagues, and friends?

A: I wear my Parkinson’s on my sleeve. I think people knew before I told them because of my tremor. The hardest part was seeing my parents cry when I told them. That broke my heart. My father, may he rest in peace, would have given his life for me not to have Parkinson’s. So would my mom. It almost makes you not want to see people that you love because you feel like you are hurting them when they see you having so much trouble. You tend to close yourself off, which is one of the worst things that you can do.

Q: You have a family. Tell us about your children.

A: I have two small children – a little girl who is two and a half and a little boy who is one and a half. My kids are the joy of my life – they are my heart and my soul. They are who I fight for every day. I hope that by bringing awareness to PD, it will bring us closer to a cure so that my children will never have to go through this. They are my driving force in this journey.

People don’t realize the importance of family. I was probably one of those people when I was working construction. People are driven by money, by their work, and they lose sight of what is important. If you are healthy and everything is going well – take time for your family. That is what is important at the end of the day.

Q: How did your Parkinson’s disease land you in a movie?

A: If you told me a year ago that I would be in a movie, I would have never in a million years believed that. My Parkinson’s journey has been a curse, but it has also been a blessing. God has closed one door and opened another one.

The director Grant Singer was making a movie called Reptile with a character who has Parkinson’s disease. He found my posts on Instagram and was trying to reach me. Mr. Singer’s assistant called my cell phone to try to talk with me about the movie. Of course, I thought the call was spam and I ignored it. The assistant tried twice more and finally said to me: “If you hang up on me, I will not try again, so please listen to what I have to say!”

I got the call over the summer, and we just finished shooting my scenes in November 2021. The movie stars Benicio Del Toro and Alicia Silverstone. Justin Timberlake is in it as well. It is about a New England detective and a case that he is working on. I play a person with PD and had the privilege of working alongside these actors! The movie will be released in 2022. I am very hopeful that it will help raise awareness about PD.

Grant Singer, the director, saw something in me that I did not see in myself. I almost backed out of the movie – I was too scared of showing everyone my tremor. Grant said, “We know you shake. We want to showcase what you are going through, so other people can see it and learn from you”. I want to thank everyone in the cast and crew – to thank them for making me realize that there is greatness inside, just because I didn’t see it doesn’t mean that others can’t see it.


Q: Any final thoughts?

A: Yes! I really want to emphasize to people that you should do whatever you need to do to make your life easier. That may include using a wheelchair now and then – or a personal electric vehicle as I like to call it. Put your pride aside and participate in whatever way you need to. Who cares what other people think? We worry too much about what other people say and think about us. If you need a cane or a walker, use it. I work out as hard as I can. But some days you may need a cane or a wheelchair and that’s OK. Don’t let your pride limit you or get in the way of you enjoying your life.

Tips and Takeaways

  • John Capone has young onset Parkinson’s disease, and despite battling the disease physically, mentally, and financially, he posts messages of optimism and determination on social media in an effort to raise awareness of PD and support others who are having a tough time.
  • John’s positive outlook and social media activity landed him a role in an upcoming movie, playing a man with Parkinson’s disease.
  • He is eager to share his story and spread awareness about PD and encourages people to not give up, get help when they need it, and keep on fighting.
  • To learn more about YOPD visit our website and view this special episode of Dr. Gilbert Hosts.

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