From Athlete to Warrior: John Cullen’s Fight Against Parkinson’s
“It’s Just Parkinson’s” is an inspiring documentary that follows JOHN CULLEN, a 62-year-old resident of Florida, as he faces Parkinson’s disease with determination. Despite the challenges of the incurable illness, Cullen’s indomitable spirit and involvement in powerlifting have transformed his physical mobility. The film explores themes of existence, mortality, camaraderie, and the impactful mindset of the IJP movement in the face of adversity.
In 2015, John Cullen received a Parkinson’s disease diagnosis. A genuine athlete throughout his life, he had actively participated in more than 100 races involving running and cycling, along with over a dozen obstacle races. Following his Parkinson’s diagnosis, physical activity became essential. In 2019, Cullen embarked on a journey into powerlifting. Astonishingly, he found that the act of lifting heavy weights placed stress on his central nervous system, leading to a reduction in specific Parkinson’s symptoms. Although not a definitive remedy for Parkinson’s, Cullen experienced frequent powerlifting exercises, giving him control over the signs of the ailment.
As a response to his experiences, John initiated the “It’s Just Parkinson’s (IJP)” movement to assist individuals from diverse backgrounds. Cullen perceives IJP’s mission as a steadfast support for those grappling with challenges, an illuminating force for those navigating darkness, and a wellspring of hope for those feeling defeated. He explains, “Each day brings new challenges; some days, we face overwhelming circumstances. If we don’t continue to fight our fight, then we have given up, and all hope to live is lost for eternity.”
The documentary “It’s Just Parkinson’s” penned by Mary Dartis and directed by Diane Akam, places John Cullen at its centre. At 62, Cullen, a committed athlete, refuses to allow Parkinson’s to determine his identity as he relentlessly pursues monumental goals, showcasing his remarkable mindset in a narrative characterised by grit, perseverance, and an unwavering commitment even when confronted by impossible odds. Viewers can access the film trailer here:
In a report dated May 2021, journalists Jackie Winchester and Veronica Marshall, writing for WINK News, highlighted that powerlifting, beyond its physiological and psychological benefits, offers a cost-effective alternative to the typically uncovered expensive physical therapy, thus providing significant value.
Cullen shared with businesswire.com, “I think for some people when they get diagnosed with Parkinson’s, they’re devastated; they might think their life is over. But my attitude was, ‘Bring it,’ ‘Let’s go,’ ‘I’m ready to take you on.’ I’m not going to give up until I have to. I will die fighting.” Cullen perceives IJP as an anchor, a guiding light, and a beacon of hope – a sanctuary to gather and find solace amidst life’s storms. Embracing the IJP mindset isn’t confined to those with Parkinson’s; it’s a philosophy that resonates universally.
Amidst all his arduous paths, John humbly reflects, “If I knew then what I know now, I’d probably write a letter that went something like this.” His letter to his younger self is available on the IJP website “http://www.itsjustparkinsons.com/a-letter-to-myself/“:
Dear John,
Life is about to change in ways you never imagined. It’s okay if you’re scared. It’s okay if you’re angry. All feelings are valid. But I won’t sugar-coat it; this fight will be long, and it will be hard.
Your body will betray you. After years of training and working out, your body will give up on you, and basic tasks will seem like Goliath. There will come days when you don’t recognise yourself and doubt your identity. There will also come a time when you have more bad than good days, and you’ll wonder what the point of living is. Don’t be scared. Don’t give up. And never say die. You got this. TRUST ME. Once you’re diagnosed with Parkinson’s, PD for short, in the future, you’ll forever think of your life in two parts: ‘Life before Parkinson’s’ and ‘Life with Parkinson’s’. Before and after. BEFORE: Put, it will be your past life- a time when ‘Parkinson’s’ wasn’t a part of your lexicon.
Life before Parkinson’s was when you attempted anything without considering physical limitations. It was a time when you never contemplated failure. You rode your bicycle an insane number of miles in all kinds of conditions and terrain. You ran outrageous distances with limited training. You willed your body to do what you wanted, and it responded. In addition to running and bicycling, you climbed mountains, parasailed and participated in CrossFit. You never worried about how your body would react; you didn’t need to. It did what you told it to do. Period. AFTER: Put, this is the future, where I’m writing to you from. It’s life with Parkinson’s, and (SPOILER ALERT!) it will be okay. You’ll be diagnosed with Parkinson’s in 2015, but you’ll suspect something is wrong even before then. Odd symptoms will plague you for months, and you’ll find yourself researching diseases such as multiple sclerosis and Parkinson’s, secretly hoping you are wrong. But even after the official diagnosis, your symptoms will be minimal (at first, anyway). You’ll look healthy, and no one will believe you have PD. Their disbelief will rub off on you, and you’ll wonder if the doctors got it wrong and it was a mistaken diagnosis. When these moments come, please don’t dwell on them because they are false prophets. In time, more Parkinson’s symptoms will crop up, and you will no longer have the luxury of doubt. A day will come when not even an hour will pass without you being reminded of your PD. It will be your constant companion. Don’t hide your diagnosis. Tell everyone you have Parkinson’s. Please don’t be ashamed of it, own it! Doing this will take the stigma out of it. If you appear comfortable discussing it, people will be comfortable asking you questions, and they will educate themselves in the process. Encourage a dialogue. Whether you want to or not, you are now a ‘Parkinson’s Ambassador’. Take up the mantle with pride. In time, many of your abilities will diminish (some sooner than you expect or are ready for). On countless mornings, you’ll have trouble just getting out of bed. Your walk will suddenly become a shuffle, and you’ll jokingly compare yourself to Frankenstein. Your skill will take a hit. Simple tasks such as buttoning and unbuttoning buttons will seem impossible. Steak knives will suddenly become unusable. Some days, getting dressed without help will be hopeless. It’s okay. Ask and accept help when you need it; there is no shame. You may need assistance with certain things, but that doesn’t mean you are incapable. Everyone has limitations. Be gentle with yourself. Don’t allow yourself to get upset about your fate. Never blame yourself or get angry if you can’t do something. Learn to roll with whatever Parkinson’s dishes out. I know that’s easier said than done, but a positive attitude is half the battle, and you, my dear John, have always been optimistic. No matter the situation, you have always looked on the bright side, so never lose hold of that hopefulness. You’ve always loved physical activity, and the gym has been a form of therapy, but all forms of therapy should be considered. Invest in occupational therapy and speech therapy, as they will greatly benefit your journey. Due to Parkinson’s physical symptoms (shakiness, stiffness, difficulty walking, difficulty with balance and coordination), many wrongly assume that PD only affects the body’s movement. Don’t fall into this trap. Parkinson’s is a neurological brain disorder, and how it affects your mind may be the biggest surprise. Depression and suicidal thoughts are real. Focus on your mental health as much as your physical health, for you can’t be healthy without both. There will come a day when you say, ‘I’m John Cullen. I fucking got this. Bring it on, Parkinson’s! Give me your best shot!”. When that time comes, hang on to that warrior attitude because you’ll need it where I am (and beyond) in the future. But a word of caution: be careful what you wish for because Parkinson’s will certainly ‘bring it’. In time, you’ll have a mantra, “It’s Just Parkinson’s” (IJP). On days when your symptoms are minimal, it will roll off your tongue. The challenge will be to say it (and believe it) on your bad days, when you can barely move, when just rolling over in bed feels Herculean. But you’ve never been a quitter, and I don’t expect you to quit now. Whether in your past business ventures or athletic endeavours, you have always had a ‘never give up’ attitude. You’ve always strived when the outcome of a situation is in doubt. Embrace that attitude, for it will serve you well. Continue to laugh at yourself and your situation, for laughter truly is the best medicine. As much as a positive attitude is therapeutic, it would be best never to forget that one day, you (we) will lose the battle with Parkinson’s. I don’t say this to be macabre or to have you lose hope. I know you will never stop fighting, ‘Surrender’ is another word not in your vocabulary, but I say this because knowledge is power. Don’t be afraid to find out what’s in store. Research PD in detail and learn from the experience of others to get a better understanding of what the future may hold. Although everyone’s journey is different, the more you know, the better prepared you will be. There is no sense in being caught off guard. Not knowing can be detrimental, so learn as much as possible. Not everything will change, not completely, anyway. You’ll continue your athletic endeavours and take up Spartan obstacle course racing, a tough sport for a healthy person; it’s formidable for a person with Parkinson’s. Next, you’ll turn to powerlifting and excel at it. To your great surprise, you’ll discover that powerlifting relieves many of your Parkinson’s symptoms. This discovery will fundamentally change your life and possibly the lives of others. There will be many more activities that you can try along the way. Some you will excel at more than others, but the lesson is never to avoid taking on new challenges. Don’t believe the stereotypes of what someone with PD can or cannot do. Break the mould of what people expect of Parkinson’s patients! Don’t take the people in your life for granted; count your blessings daily. You’re fortunate to have your primary caregiver with you every step of this journey. Others will come along down the road; let them in your life and allow them to help you. Don’t be surprised if you enrich their lives as much as they enrich yours. Besides your friends and loved ones, seek out experts and heed their advice. No one knows this disease better than a neurologist, so consult with one early on and ask many questions. Their knowledge of this disorder may help ease some of your anxiety (especially in the early days of your diagnosis). They may also recommend physical activities and training to help you navigate Parkinson’s while staying fit. In addition to regular exercise, a diet-based approach will do you good. Now more than ever, what you put in your body is important. I will leave you with this parting thought: It’s important not to think of Parkinson’s as a life sentence. Although PD is incurable, you are still in control of your narrative. Face Parkinson’s straight on and fight it with everything you have (as you have always done when obstacles come your way). You’re still the warrior you’ve always been; you have a different shield. In time, you will come to believe that I have Parkinson’s, but Parkinson’s doesn’t have me.
Love,
The future John.
