It’s been quite the year. I know everyone says this but it’s true, and I’m not even referring to the Coronavirus. In a way, COVID-19 has been the least of it. I’m talking about Parkinson’s. This last year my Parkinson’s has really changed me, more than any previous year. And it’s not just the physical changes, even though there have been many (more on that later) but it’s changed my outlook and my day-to-day life. In the last year three words have literally changed my life- IJP, ‘It’s Just Parkinson’s’. Although they started growing roots many years ago, it’s during the last year that they have really taken shape and evolved into more than just a life motto, but dare I say a movement. In the last year IJP has gone from a state of mind to a revolution. It’s inspired healthy people and Parkinson’s patients alike. And although I never wanted or expected to be a role model, I humbly accept the task if it means helping others by sharing my story- and I mean that literally since in the last year my ‘story’ has inspired a documentary which is currently in production. So, you see, it truly has been quite the year. But I can’t help but think back even further, to where this journey really started. The term ‘journey’ is quite fitting as this all started six years ago on another continent, in a foreign land, while bike riding down grueling mountain terrain in the French portion of the Pyrenees. Of course, I was oblivious to it all then, to how my life was about to change forever- for worse, but in a way for better.
If I knew then what I know now, I’d probably write a letter that went something like this:
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 Goliath. There will come days when you don’t recognize yourself and you’ll doubt your identity. There will also come a time when you have more bad days than good days, and you’ll wonder what’s the point of living. Don’t be scared. Don’t give up. And absolutely never say die. You got this. TRUST ME. Once you’re diagnosed with Parkinson’s, PD for short, going forward you’ll forever think of your life in two parts: ‘Life before Parkinson’s’ and ‘Life with Parkinson’s’. Before and after. BEFORE: Put simply it will be your past life- a time when ‘Parkinson’s’ wasn’t a part of your lexicon.
Life before Parkinson’s was a time when you attempted anything without a thought of 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 on all kinds of terrain. You ran outrageous distances with limited training. You simply willed your body to do what you wanted it to do, 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 simply 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 even before then you’ll suspect something is wrong. Odd symptoms will plague you for months and you’ll find yourself researching diseases such as multiple sclerosis and Parkinson’s, all while secretly hoping that you are terribly wrong. But even after the official diagnosis, your symptoms will be minimal (at first anyway). You’ll look and feel healthy and no one will believe you have PD. Their disbelief will rub off on you and you’ll wonder if maybe the doctors got it wrong and it was a mistaken diagnosis. When these moments come, don’t dwell on them because they are a false prophet. In time more Parkinson’s symptoms will crop up and you will no longer have the luxury of doubt. There will come a day 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. 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 in turn 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 dexterity 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 in it. You may need assistance with certain things but that doesn’t mean you are incapable. Everyone has limitations. Be gentle on 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 truly is half the battle, and you my dear John have always been optimistic. No matter what 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 even speech therapy as they will be of great benefit on your journey. Due to Parkinson’s physical symptoms (shakiness, stiffness, difficulty walking, difficulty with balance and coordination) many people 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 will affect your mind may be the biggest surprise of all. 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 will 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 in the future where I am (and beyond). 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, on the 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 your 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 at the situation you’re in, for laughter truly is the best medicine. As much as a positive attitude is therapeutic, you must never 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 that’s 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 you possibly can. Not everything will change, not completely anyway. You’ll continue your athletic endeavors and take up Spartan obstacle course racing, which is a tough sport for a healthy person, it’s formidable for a person with Parkinson’s. Next, you’ll turn to powerlifting and you’ll 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 try along the way. Some you will excel at more than others, but the lesson is to never shy away from taking on new challenges. Don’t believe the stereotypes of what someone with PD can or cannot do. Break the mold of what people expect of Parkinson’s patients! Don’t take the people in your life for granted and count your blessings every day. You’re fortunate to have your primary caregiver with you on every step of this journey. There will be others who 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 a lot of questions. Their knowledge of this disorder may help ease some of your anxiety (especially in the early days of your diagnosis) plus they may 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 that you’ve always been, you just have a different shield. In time you will come to say, and believe, I have Parkinson’s, but Parkinson’s doesn’t have me.
The future John.
PS: We got this. IJP