CHAPTER ONE A DAY IN THE LIFE OF ROB As dawn breaks quietly over the horizon, the world begins to stir. For many, it's a new day filled with possibilities, but for Rob, a long-term Parkinsonism sufferer, the morning brings a familiar struggle. At four-thirty in the morning, the gentle embrace of sleep slips away, replaced by the nagging discomfort of a painful neck that refuses to relent. On most mornings, if the stars align and his medication is working effectively, Rob might enjoy a few more hours of restful slumber. But not today. The involuntary movements that accompany his condition are relentless, and there's no fighting against them. In the hushed stillness of the house, Rob tiptoes through his thoughts with the utmost care. The decision to sleep separately from his wife, Jane, was made long ago, a practical resolution to ensure they both could find rest amidst the chaos of his symptoms. With Jane sleeping soundly above him, the last thing he wants is to disturb her hard-earned peace, especially since she still juggles a demanding full-time job. Their home, once a place of shared dreams, has adapted to this new reality—a downstairs en-suite was added for his safety, a haven where Rob can navigate his night-time struggles without the threat of falls or an upset partner. As he clumsily dresses, the chill of the air pricks at his skin—a reminder that the central heating won't kick in until eight. Rob shuffles into his study, a sanctuary filled with the remnants of his past passions, careful not to let the creaky floorboards announce his presence. The challenge of moving quietly is never lost on him it's an art he's had to master as the tremors often betray his intentions. But as the minutes pass and dawn inches closer, Rob faces another decision: Should he take an extra dose of medication now, risking an increase in dyskinesia later, or should he hold out until his scheduled dose? It's a delicate balance—short-term relief versus long-term consequences. Each choice is weighed in the silence, a heavy responsibility that accompanies the morning ritual. With a deep breath, Rob embraces the day ahead. Each moment becomes a testament to resilience, a glimpse into the life of someone who refuses to be defined by his condition. As he shuffles through his space, he is reminded of the strength he draws from Jane, whose unwavering support gives him the courage to face the challenges of each new day. Amidst the discomfort and uncertainty, the love they share remains a guiding light, illuminating the path as he navigates this intricate dance with Parkinsonism. As the world awakens outside, Rob prepares himself for the day—armed with determination, compassion, and the promise of tomorrow. Each morning, as the first dose of my medication begins to take effect, a familiar sense of clarity washes over me. It's a fleeting window of normalcy—about three glorious hours—before I plunge back into the unpredictable ebb and flow of my condition. During this precious time, I feel a sense of urgency to accomplish as much as possible, knowing full well that once the clock strikes the next medication hour, I'll be thrust back into that foggy realm where writing, movement, or even coherent thought can feel like an insurmountable challenge. Today is Sunday, and the agenda is blissfully simple: the sounds and sights of Roland Garros in Paris. The thought of settling into the couch, possibly drifting off to the gentle hum of tennis commentary, fills me with comfort. At this moment, the weight of the daily routine is slightly lifted. It's a reminder that life can be rich, even within the constraints of Parkinson's. Yet, I am acutely aware of the ticking clock, counting down to my next dose at three thirty in the afternoon, when I will once again be at the mercy of my medication's timing. Each day is a carefully orchestrated dance, dictated by the rhythm of my meds. There's a cycle to it: periods of productivity punctuated by bouts of fatigue and uncertainty. The unpredictability can be exhausting, both physically and emotionally. Jane, my unwavering partner, has witnessed this struggle firsthand. She's no stranger to finding me slumped in my chair, drained from the constant push and pull of battling my condition. Yet, as I navigate this journey, I remind myself that I refuse to be defined by Parkinson's. I hold tight to my little bubble of determination, ready to face whatever comes next, even if it means preparing for the challenge of my third dose later this afternoon. So, as the tennis match rolls on and the players engage in their fierce competition, I find solace in the rhythms of the game—a game that, like my life, is filled with moments of triumph and obstacles to overcome. And while the word relax has become a distant memory, I strive to embrace these fragments of normalcy, making the most of each moment as I ride the waves of my unpredictable reality. As I sat down to reflect on my day, I realized that one crucial detail had slipped my mind—food plays a significant role in how my medication affects me. Unfortunately, today was a stark reminder of that reality. You'd think that with years of experience managing my condition, I'd have learned by now that a protein-packed meal must be avoided at least an hour before taking my meds. But in a moment of weakness, I prioritized my rumbling stomach over the wisdom I've gained. The consequences hit me like a freight train when it came time for my third dose. Nothing happened. It was as if my body had become a stubborn engine running on fumes, refusing to start without the right fuel. Unlike a straightforward two-stroke engine that just needs petrol, the human brain is a labyrinth of complexity, and when it decides to shut down certain functions, reigniting them isn't straightforward. I felt the frustration wash over me as I swallowed my medication, fully aware that they might not work this time. In that fog of disappointment, I fumbled with my phone, attempting to respond to messages from friends who cared enough to reach out. But simple tasks felt Herculean. Each tap on the screen required an insurmountable amount of willpower. I was stuck in a battle with my brain, and although I finally managed to type a three-word response, it felt like climbing a mountain. Yet, despite the struggle, I chose to remain silent about my struggles. What's the point of complaining? No one has a magic wand to make it better, and I've learned that acceptance is a stronger ally than lamentation. So, I carry on, doing my best in moments when clarity seems elusive. Life continues to throw challenges my way, but I embrace each one as a lesson, reminding myself that resilience is forged in the fires of adversity. One thing I neglected to mention that has a significant impact on my medication is food. Unfortunately, today I got it wrong, and when I do, I pay the price. And pay I certainly did. You would think that with my experience, I would know by now that an intake of protein before medication is a big no-no, at least an hour beforehand. Yet, in a moment of weakness, I allowed my stomach to take precedence over sensibility. When the time came for my third dose of the day, nothing happened. It felt akin to trying to start a car on empty—you can crank the ignition all you want, but without the right fuel, that engine isn't going anywhere. In the intricate machinery of the human brain, the stakes are even higher. Unlike a simple two-stroke engine that needs just petrol, our brains are light-years more sophisticated, and when certain parts shut off, reigniting them can feel nearly impossible. I took my meds, but instead of relief, I was met with silence. The real challenge began as I attempted to interact with my phone, navigating through a sea of messages from friends and family. My fingers danced over the screen, but I struggled to hit the right keys, each one seeming to elude my grasp. Yet, in true stubborn fashion, I pressed on, determined to send at least a three-word response. The sheer willpower it took to accomplish such a simple task illustrated just how profound my struggles were every two to three hours. But here's the thing—I don't complain to anyone. What's the point? No one is going to wave a magic wand and make me feel better. So, I do what I can, accepting my limitations while striving to make the best of each day. In the end, it's about finding strength in vulnerability and learning to navigate the unpredictable terrain of life, one small victory at a time. Each challenge I face becomes a story of resilience, a testament to the human spirit's ability to adapt and persist, even when the odds seem stacked against it. And perhaps that is the real journey—embracing the highs and lows and continuing to move forward despite the hurdles. As the clock strikes eight in the evening, I find myself entrenched in a familiar routine, poised to take my penultimate dose of medication for the day. The shadows of the evening stretch across the room, and the weight of exhaustion settles heavily on my shoulders. After the last mishap—when an ill-timed meal disrupted my medication schedule—I've learned to act with a bit more foresight. I swallow the pills earlier, hoping to carve out a moment for my evening meal, a small luxury that often feels more like a distant dream. Settling into the same armchair where I spent the early hours of the morning, I feel a wave of nostalgia wash over me. This chair has become my sanctuary, a place that holds countless memories of both struggle and solace. As I await the medication to take effect, I'm acutely aware of the cycle my life has become. Each day grants me a fleeting three to four hours of relative normality, followed by the relentless grip of dyskinesia, a reminder of the battle I face. I've learned to embrace this rhythm, focusing solely on the moments that flit between doses. Life may have dealt me a challenging hand, but wallowing in self-pity serves no purpose. Instead, I push forward, determined to savour the fragments of my day. Yet, I can't help but feel the weight of my condition on my loved ones, particularly Jane, my devoted wife. My illness demands a choreography from her, fitting her life around my medication schedule—an unfair burden that tugs at my heart. As the evening progresses, I drift into an unexpected slumber in my armchair, oblivious to the passage of time. When I finally awaken, nearly two hours have slipped away, leaving me disoriented and bleary-eyed. Any normal person would simply extinguish the lights and retreat to bed, seeking the restorative embrace of sleep for the night. But my reality is different. I find myself shackled by the ticking clock, a mere hour away from my final dose of the day. The thought of not taking my medication sends a chill down my spine—the possibility of a sleepless night looms larger than my fatigue. With no choice but to wait, I remind myself that this is my life now, a delicate balance of medication, family, and the fight against the shadows that linger on the edges. I may be weary, but each moment is a testament to resilience, a reminder that even in the face of adversity, there is still a life to be lived, one dose at a time. As the clock ticks slowly towards midnight, I gather the last remnants of my energy to tackle the few chores I can still manage. The house, quiet but for the soft hum of the night, bears witness to the daily routine that has become a delicate dance between capability and limitation. By eleven thirty in the evening, Jane, my tireless wife, retires to bed, her exhaustion etched into the lines of her face. Alone with my thoughts, I find solace in the stillness. Despite the fatigue weighing heavily on my body, I turn to my familiar ritual: brewing a hot cup of tea. I know better than caffeine isn't conducive to rest, but it has become a comforting companion in my evenings. As I rummage through the biscuit barrel, my fingers brush the crisp ginger biscuits, their spicy aroma igniting a flicker of warmth in my heart. I settle into my overused armchair, the fabric worn yet familiar, enveloping me like an old friend. In this moment, clarity washes over me. You might expect that after a day that began at four thirty, the urge to escape to the shadows of oblivion would be overwhelming. Yet, instead of despair, I feel a profound sense of gratitude. Life has been kind, even amidst the trials of Parkinson's disease that have gradually tightened their grip. Looking back, I cherish the years I spent leading a normal life—filled with laughter, family gatherings, and the simple joys of everyday existence. Each memory is a vibrant thread in the tapestry of my life, reminding me that while the illness may define my present, it can't erase the happiness of my past. As I dunk the ginger biscuits in my cup of tea, the warmth seeps into my bones, a small comfort against the chill of the night. I glance at the clock, calculating how much longer I must wait for my final medication of the day. If luck is on my side, perhaps my body will respond, allowing me a few moments of respite before the clock strikes one in the morning. In that fleeting window of time, I hold onto hope—the hope that tomorrow, amidst the challenges, I will find joy. As I gather the last bits of energy swirling within me, I shuffle through the familiar landscape of our home, tackling the few chores that still feel manageable. The clock inches closer to 11:30 p.m., and I can see the fatigue etched on Jane's face after tirelessly caring for me and handling the household duties, she finally retreats to bed, leaving me alone with my thoughts. A creature of habit, I find solace in my nightly ritual. Despite the knowledge that it's counterproductive to my need for rest, I make my way to the kettle, eager for a hot cup of tea. With a handful of ginger biscuits in hand, I sink into my well-worn armchair, the fabric hugging me like an old friend. It's in these quiet moments, as the world outside quiets down, that I discover a surprising clarity of thought. You might expect that after a day that began at four-thirty in the morning.—a day filled with unrelenting struggles—I would want nothing more than to hide away from my reality. Yet, here I am, feeling a sense of happiness that surprises even me. It could have been so much worse, but I chose to embrace each moment, cherishing the time I spent living a life that felt normal, with laughter and love shared with Jane and our family. Reflecting on those precious years, I realize how vital they were in shaping my resilience. Parkinson's disease has steadily crept into my life, yet I refuse to let it define me. I remember the family outings, the simple joys of weekend barbecues, and the warmth of shared meals around the dining table—memories that now serve as my anchor in stormy seas. As I dunk my ginger biscuits into the steaming cup of tea, the sweet and spicy flavour bursts in my mouth, a tiny indulgence that brings comfort. I glance at the clock and see that I have only twenty minutes until my final medication of the day. Hopeful, I allow myself to dream that if the medication kicks in as it should, I might just find my way to bed before the clock strikes one in the morning all its unpredictability, still holds beauty. I close my eyes for a brief moment, savouring the taste of tea-soaked ginger biscuits and the warmth of cherished memories as I prepare to face whatever tomorrow may bring. Robert James Keene 2024