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

STUMBLE AND FALL You have to see what Parkinson's can do to a fellow human being to believe it. It can be very cruel at times if you don't get on top of it both mentally and physically. It can stop you in your tracks. But it's not the end of the world because you can find ways around most things if you dig your heels in and push back against it. I sat in a wheelchair for ten years and accepted it and I stopped trying because it was easier and safer for me to do that. If I sat in a wheelchair I wouldn't fall and hurt myself and my family didn't have to worry about me. The problem was that if I did that then I became reliant on the wheels and my legs became redundant. I stopped trying to use my legs because it was easier to get from point A to point B in a wheelchair. But it wasn't just my legs because what I was saying to the world was that I was accepting my disability and succumbing to it. That is the easy way. I used the wheelchair in every aspect of my life because I didn't want to fall and pick myself up off the ground in case I hurt myself. What did I just say? I didn't want to fall. And then I realised what I was doing. It seemed obvious that if I tried to walk I would stumble and fall. I was falling on the floor because that's what happens if you have Parkinson's you are supposed to do that. But what happens if you walk across a room and you don't stumble and fall what then? I had fallen into thinking that everything about living with Parkinson's was bad and nothing was good, and that's the worst thing that you can do. Live a life of negativity. Parkinson's is not a metaphor for everything bad in your life. It's a problem waiting to be solved and nothing more than that. So, if you stumble and fall, so what? Pick yourself up off the floor and try again. Robert James Keene 2024

DOPAMINE DEAD My journey hasn't been easy. It's been far from that. It's been a difficult road. But, I've made the best of it. That's all I could do. That's all anyone could do. Parkinson's has been a struggle both mentally and physically. It's been a Maelstrom of constant movement from start to finish. But if that's how it is then so be it. I will find a way. I am not giving up. I refuse to do that. It's not in my character. I wake up every morning, and I start all over again. I begin the day with enthusiasm, as I always have. Dopamine dead the doctor said! But there's life in the old sea dog yet I shout back! Realisation, confirmation, affirmation. It felt like a nail in my coffin. What the hell could I do now? I will remember the day that my future ran into a brick wall and was stopped in its tracks. This was the day my life was blown away by a problem in my brain. Or at least, that's how it felt to me. I had just turned off the television and I couldn't move, I couldn't speak, I couldn't think, and I was in shock. The sky was angry with me and I didn't know what to do. I had just celebrated my nineteenth birthday sixteen days before with my whole life ahead of me and I had found myself falling into a black hole with no way out. I had Parkinson's. I had to reset and start again. The most important thing you have to understand from day one of diagnosis with Parkinson's is that you can slow it down but you will never stop it regardless of what you do whether it is surgery, exercise or whatever because with the ageing process of life, your brain and body cannot be as good as the day before and that's a fact. We all age and cells die regardless. But it doesn't happen straight away. One day can feel like a lifetime if you want it to be. So enjoy the moment. Enjoy each day and live it to the full. And think about tomorrow and the day after that when tomorrow comes because you are not there yet. The biggest problem in life is that we worry so much about our future and we forget about today. So stop worrying about things that never come to pass and project yourself into the future because the future will take care of itself and what will be will be. And say to yourself I am the universe and my universe is me and whatever is going to happen to me was always meant to be and then you can smile about today and enjoy the moment because that's what truly matters in your life and nothing else. Right here, right now. When I close my eyes I can see everything, because I have a universe inside me waiting to be explored. But you can only do that if you learn to open your eyes and understand. And I've only come to understand that in the last few years as my health has slowly deteriorated. I have made myself ill by worrying about insignificant things that didn't matter and it has taken me nearly sixty years to realize that. I've stepped out of the chemical world, populated by plastic-polluted people, who are creating a lifestyle that has caused all the chronic and serious illnesses that there is no cure for, and I have started to walk again instead of running. I can enjoy every single minute of the day instead of wasting every single hour. There are so many people in our world who are killing themselves with speed and technology but they never realize that until they're dead and by then it's too late. We are all trying to win a race as if it's the only thing that matters, when in fact we should be happy just to participate. The fact of the matter is that there can be only one winner and an awful lot of losers who can't understand why it's all gone wrong. But modern life only respects winners and forgets about losers. So when the next race comes along we try even harder and we lose again, and so it goes on until we try too much and we make ourselves seriously ill by the stress and anxiety of trying to win the race at all costs. And that is because we lose all perspective of what is important, and what's important is to enjoy competing and not try to be first past the post. There are such tiny margins between winning and losing that there is hardly any difference at all in reality, but all we can see is the prize at the end of the race, and it becomes all important to the point that you can't bear the thought of not winning and you lose perspective of what's important. There are winners and losers in life but you can't always be both, so you have to accept that you might lose before you win. But you only find that out through experience and suffering to appreciate what matters, and I am at that stage now where I understand. I have taught myself through my suffering to appreciate what's good and what's important, and I have learned so much about myself and the world around me through my illness that in some respects I am glad that I feel like this. Understanding yourself is the key to everything because then you will know what it feels like to be a human being and all the frailties that go with it. I don't expect perfection in myself anymore, I just expect myself to be me. And as long as I can be myself and look in the mirror and accept what I see then I can be happy with myself and feel comfortable in the way that I am right now. Because that's all that matters, the here and now. And whatever has passed and whatever comes in the future doesn't matter until it happens and only then will I give it any thought at all. As much as my fifty-year journey with Parkinson's has been a downward spiral in health it has also been a learning curve in a life of enlightenment and mindfulness. It has taught me many things. It has given me clarity of thought. But above all else, it has enhanced my understanding of what's important in life and not to accept anything less. I have learned gratitude and humility. Living with a condition like Parkinson's can be inspiring at times but it can also bring you to your knees. And if I had the chance to do it again I wouldn't have changed a thing. Parkinson's has taught me more than you can imagine. And, I am so grateful for that. Destiny is a powerful force that none of us can control but I've always believed that everything happens for a reason. I was meant to be on this journey. I was meant to suffer to appreciate the here and now. I was meant to be. The little things become massive. And the big things are hardly noticeable at all. The most important thing to understand is that you can't fight what you can't see so let it be and enjoy the moment. Enjoy a simple cup of tea and let the big things wait. And deal with them when you feel ready and not before. Appreciating drinking a simple cup of tea in your own time at your own pace is a learning curve because it's made you think. Helped you appreciate the moment. It's only when you find yourself with a life-threatening illness that you realise how important each day is. And I've been through that many times when I've wondered how I'm going to make it to the end of the day because fear can overcome the best man or woman. So treat each day with gratitude and mindfulness and live your life one day at a time because the future's not here yet so think about that when you get there. Above all stay positive. That's always been my game plan and if it works for me then it can work for you. It's not rocket science it's just common sense. In the end, there is only me to struggle with and find a way of living with my disability. I have medication I have support but in the end, there is only me who has to live through the pain and suffering. Nobody knows that but me. Only me. I don't make a fuss about it because it's not worth it so I keep to myself and I go through it daily. But I find a way, I always find a way. And it's usually when I'm at my lowest point that something inside me finds a way to drag me out of the chaos that is Parkinson's and find the calmer waters of my mind. It's a daily struggle with anxiety and pain but I always find a way. It's my solo flight and there's no going back, so I will carry on until my journey is over whenever that might be. Because when all is said and done there is only me. It's something that I've had to learn to live with. Panic attacks. Anxiety. But, at least I can talk about it now. Which is a positive aspect. It seems so irrational. And it happens when I least expect it. I could be normal for one minute and then suddenly I have a panic attack. Why are you feeling anxious Rob? I don't know. I might be super confident to think the world was about to collapse on my head. Frozen to the spot with fear. In the early days, I could lock it away in a dark cupboard and nobody would know. And it built up like a pressure cooker until one night when I started to shake uncontrollably and I thought it was a heart attack. My wife called the paramedics and they checked my vital signs, I was perfectly normal much to my embarrassment and then I realised it was panic attacks which had suddenly risen to the surface like a long-dormant volcano that was about to erupt that I would have no control of. That's how it feels. A never-ending rollercoaster ride. There is something special about the sunrise, the dawn of a new day. So soothing to the senses and spiritual in a way that you wish it could last. As the sun begins to rise and the dawn chorus heralds the arrival of a new day. And yet the magic of the early morning lingers and then slips away. This is your crowning glory. The birth of new hope. A new beginning. A day in which you can contemplate, reflect and look forward with enthusiasm, optimism and hope. And although each day might present its challenges no day is ever the same. Every day is different. Each second, minute, and hour of each day seems to last a little bit longer and makes them all worth remembering. Worth living. Worthwhile. So, live your life and be grateful for what you have, for each new day. And make them last for as long as you can. And appreciate the sun in the morning and the stars at night. And take nothing for granted and live a full life. Until you reach the end of your rainbow and a peaceful goodnight. When you look up to the skies what do you see? The insignificance of man. You can believe what you want to believe. Some of us are happy seeing the blue sky and don't to look any further than that because it scares them. But the future must surely be out there somewhere. Surely? I had an out-of-body experience because of the expanse above. I felt so insignificant, so small compared to the outer reaches of the cosmos and space. It's huge, colossal, immeasurable. It was a thought-provoking moment. I realised how irrelevant and unimportant Parkinson's disease was compared to what serious health conditions might be lurking out there On any other inhabited planet. Parkinson's might be treated like a common cold. I felt insignificant in space and time. But suddenly I had clarity. I understood. It put everything that I thought was wrong and it gave me perspective. I realised how small and insignificant we are as a species. We are ants compared to the dinosaurs out there. We've been fortunate. And we are in this massive expanse that we call the universe but what then? That is the big problem because most of us can't see further than the end of the road. We live in self-anonymity and isolation of self-importance when in fact there is more out there than we could dream of, or understand. We carry on believing that our tiny world of self-importance has relevance and is important but the fact of the matter is that we can't prove that Earth is the only planet in our small galaxy that is capable of life in whatever form. That doesn't mean that I am trying to devalue life on Earth because I'm not. But, a wise man doesn't dismiss possibility he tries to learn and understand. That is the essence of space exploration. The discovery of the unimaginable. Pioneers explore. They learn what we don't know, or understand and maybe, just maybe, we will eventually find what we are looking for. Life on Earth is a gift of nature that we should never undervalue or damage in any way. the echo system of this planet is teetering on the brink. And if we damage it beyond repair and it doesn't recover then we have to leave and find another planet that we can damage. That's the damnation of our man in our greed to always want more instead of being happy with just enough. We waste many resources we still have and we are never satisfied. And one day we will pay a heavy price for our lack of foresight. It will be apocalyptic. So why are we still looking for a cure for Parkinson's when can't find a cure for the common cold? it's thought-provoking but not impossible. We need to change. And change now. Living with pain is something I have had to come to terms with over the years of living with disability and has become part of my life. It's not a very pleasant aspect of living with Parkinsonism as I have done since my teenage years but it's something you have to accept as your mind and body slowly age. It's a natural process. But Living with Parkinson's makes that process of living a little bit harder because it's the falls that can do the damage, they can cause secondary problems and they can happen anywhere any time. When you fall to the ground you pick yourself up as quickly as you can and get on with your life but a Parkinson's fall is very different and usually very painful. When you lose your balance you fall as a dead weight and whatever you come into contact with is painful. And it is mostly caused by losing confidence in being able to move fluently. Thirty years ago I decided on the advice of my neurologist at the time that it would be safer for me to use a wheelchair for me to get from A to B. And whilst it made perfect sense in some respects it created more problems because I lost confidence in my ability to walk and relied on the wheelchair too much. It meant that I was having fewer falls but I was doing less walking. I soon came to realise that life in a wheelchair wasn't half as enjoyable as being able to walk on your own two feet because you can do so many more things with your life. And although it meant the risk of more Victoria Falls and pain I was prepared to do it. And I was so glad I did because if I hadn't I wouldn't be able to do the things I can now. As long as I have just enough, I'll be happy with that. That's all I need. I don't need more than that. And if there's not enough. I'll make do with less and accept what I have. But when there's nothing left I will have to crawl and do without. I shouldn't expect, or demand out of self-respect. I'll live my life with gratitude for what I'm given and accept that. And if I live my life with humility I have found heaven. You don't need more if you can manage with less. You just need enough and you should be happy with that. And if you can accept and understand then you can sleep at night. A wise man never complains or looks over his shoulder at what others have he looks straight ahead. And he smiles at the blue sky and the sun above his head. We live on such a small fragile planet and we should be happy with that! Robert James Keene 2024

CROWFACE. I am the storyteller, the singer of the age-old song. The big, gnarled, old tree stood like a monument to the past. I could see it from the back window of the house about fifty yards away, on the other side of the garden fence. It had been standing there for as long as I could remember. I had never looked at it before. I had walked past it so many times as a child. I had a rope swing hanging from one of its branches. I hardly noticed it was there. But in the last few days, I couldn't take my eyes off it. If you look at the top of the tree, there's a crow's nest. And, if I stood on my tiptoes I could see a big, black scruffy-looking Crow. Every morning without fail, Crowface would swoop down from the top of the tree and sit on the fence, looking around for his breakfast. And more often than not he'll find it. And you would have thought having filled his belly he would fly off and stare at somebody else's window. Instead, he sits there staring at me. When it first began it seemed rather amusing. But the longer it carried on, the more annoyed I became. I found it irritating when I was trying to concentrate on having this big old ugly thing sitting there looking in my direction. We tried to scare him off without success. He sat there and didn't move. And, it was quite disconcerting when you looked out every morning to see this scruffy-looking thing staring back at me. There's nothing particularly unusual about that you might say? I'd be there eating my breakfast and he wouldn't budge. He could almost be mistaken for dead! The only acknowledgement that he wanted to move any part of his body was when he tipped his head to one side in curiosity. Sometimes when I wake early and the sun's up I like to make myself a cup of tea, take two ginger biscuits out of the biscuit barrel and take myself down to the summer house at the bottom of the garden to welcome in the new day. And while I'm sitting enjoying my cup of tea and biscuits I suddenly notice this dishevelled-looking old Crowface with half his feathers missing, trying to sit on the garden fence staring at me again. And I almost laughed in surprise, but it wasn't funny at all. How did he know I thought to myself. And as I'm looking at Crowface and he's staring back at me I notice he seems rather wobbly and keeps his balance and sits still on the fence. A drunken Crowface I thought whatever next? So, I sit there sipping my cup of tea staring at this crow, and it's sitting there, or at least, trying to sit there, staring back at me. And, for some, strange reason it suddenly squawks and falls backwards off the top of the fence and into the hedgerow on the other side, and all I can see are feathers flying in the air and a strange kind of squawk as if it's in some kind of distress. So being the gallant Knight in shining armor that I've always laughingly believed myself to be, and in a comedy sketch that would have rivalled Charlie Chaplin at his very best, I try to jump out of the seat that I'm sitting on, and rather than moving forwards, end up toppling backwards, which usually happens when I try to move too quickly. In the meantime, there are still feathers flying in the air and squawks coming from the other side of the garden fence. The thing that I ought to mention at this point in the story is that, if you are trying to move from point A to point B as if your life depended on it, the chances of leaving point A and arriving at point B any time soon are remote, to say the least. The Chaplinesque series of events began to gather momentum because the more I tried to move the slower I became until I reached the point where I wasn't moving forward at all and I was completely frozen on the spot. Now, you would think that I might call out for help. Well, parrots move faster than jet panes or though I mistakenly thought. But the brave but sadly frozen Sir Lancelot was having none of it and was determined to stick to his quest. And, after nearly five minutes of manually trying to persuade my legs that it might be a good idea to start moving again, the squawking and flying feathers suddenly stopped. That could only mean one thing I thought to myself, and rather than having to go to the trouble of trying to get the dead bird out of the hedgerow which was not on our side of the property anyway, I decided to let nature take its course and go back and enjoy whatever might be left of my rapidly cooling cup of tea and two ginger biscuits, which I couldn't remember eating before all the commotion began. Eventually, I managed to free my legs from the imaginary bear trap that they thought they were in and go and finish my cold cup of tea and two deliciously looking ginger biscuits. Imagine my surprise when I got back to the summer house the rest of my tea had been drunk and those two deliciously looking ginger biscuits that I had been looking forward to eating had disappeared without a trace. And that literally could have been the end of the story because I could have thought no more about it. But my wife who had read about the significance of crows and their connection with the spiritual world began to feel very uneasy about what was happening and found the crow scary and wouldn't go into the back garden because of it. She always used to think that it might be one of the things that came back from another life and had decided to take the form of this enormous scruffy big black crow that refused to be intimidated by virtually anything. I could spend hours writing in the back room and he would have hardly moved an inch. It was as if he had been told to keep the house under surveillance. The theory seemed too stupid for words. I have never believed in the afterlife. As time went on I started to think that my wife's reincarnation theory might be right. It seemed such a strange idea that reincarnation could be possible. Can we come back from another life in a different form? I spent hours staring at the big black ugly crow from my leather armchair trying to figure out who it might be. And then the penny finally dropped. It was Grandpa, who hadn't been dead for too long so what was he trying to tell me? I should have realized by the fact that he had been tipping his head to one side and the only person I knew who had ever done that was him. I have some wonderful memories of him because he was a real character, not to be messed with. When he was in a bad mood nobody would go near him. He was a cantankerous old bastard, to say the least, which for some strange reason is used when describing me. The only one who wasn't scared of him was me. He would be sitting in the corner of the room in his old rocking chair, spitting fire at anybody who came within earshot, and he'd give them a tongue-lashing for no apparent reason. Because in all honesty he was as deaf as a doorpost and didn't understand what was being said to him. And I'd go marching up to him and I'd tell him off for being so silly, and he'd stare at me for a few seconds, look me straight in the eye, and he would have a broad grin on his face. He had asthma and was always struggling to catch his breath. And when he was like that he would bark at the moon. And then he could be very different. He would go quiet and he'd start shaking with fear. He started to see things that weren't there. Dad said he had been traumatized over something that had happened to him during the war but he never spoke about it. But to my grandpa, they were still alive so we went along with it. He had been like that for some time and was happy in that world, so we left him to talk amongst the spirits. And it used to be quite strange at times because without warning he would get scared of something that was in the room and start throwing anything he could lay his hands on. And I think there must have been somebody or something in the spirit world that he didn't like because my grandpa hadn't been scared of a thing in his life. After all, he had lived through two world wars, but, whatever it was frightened him. Whenever I had asked my dad he wouldn't want to speak about it and changed the subject but thinking about it now, maybe it was the grim Reaper calling time on him and Grandpa just refusing to go or it could've been something that had been locked away in his memory that had suddenly resurfaced, but whoever it was and, whatever it was about my grandpa didn't like it. He had an enormous hooked nose. A bit like the scarecrow in The Wizard of Oz, which made him laugh. But there weren't many things he would smile about. He took great pride in the two apple trees that he had in the back garden. They were his pride and joy. Grandpa would take me out there and give me some of the apples that had fallen off the tree. But for some reason, only known to him he would never let me go near them, let alone climb them. when I asked I was always met with a stern no! Towards the end of his life, as his breathing deteriorated he'd find it difficult to get to the bathroom and would get angry if anybody tried to help him. It was almost as if he wanted the suffering to end because he had become tired of the day-to-day struggle. He didn't like people to see him like that. He had always taken great pride in being able to look after himself but as he aged he became tired of fighting. But what was he trying to tell me? That was the question I kept asking myself. The one thing that I knew for certain was that when he died he hadn't left a will, or so everybody thought but I'd always believed that he had written one but nobody had ever found it, so where could it be? And how was the old crow going to help me find it? I sat there trying to figure it all out. I must have been tired and fallen asleep in my armchair because when I woke it was dark and my wife had left me there and gone to bed. But, having slept for so long there was no point in me going to bed just yet so I decided to dig out an old cardboard box that had been given to me by my relatives who had helped to clear my grandpa's house just after he died. And I had never really looked to see what was in it. Because my grandpa had always stipulated that on his death he wanted the cardboard box to be handed over to me without being opened and to make sure that his express wish was carried out he had sealed the box completely by wrapping it up with thick brown parcel tape. He had written on it that it was only to be handed over to me when he was dead. Those were his wishes. So I began to cut through all the parcel tape that he had wrapped around the cardboard box and, eventually, I was able to open the lid and to my big surprise, there were only two things in it. There was a photograph of me and Grandpa standing under one of his apple trees in his back garden and a small key. And then I understood. He must have buried something under one of his favourite apple trees in his back garden, and he wanted me to have it. I was so lucky because I knew that the house hadn't been sold yet and we still had the keys so I went over to see my aunt who was dealing with the sale of the property and asked her if I could have the keys and go over to the house and get some apples before the property was sold. So I went over to the house with a small spade and started to dig in the exact spot at the base of the apple tree where we had been standing and dug up a small tin box which my grandpa had left me thinking would be his last will but to my complete surprise, there were two fifty pounds notes in the old tin cash box that my grandpa had buried. We never saw the old Crowface again. Robert James Keene 2024

RUBIN'S WORLD It's 2037, and Commander Rubin Fray is an astronaut on a deep space mission from Earth searching for a planet known as E2, which could potentially provide a new future world for the human race. It appears to have all the vital elements to sustain human life and more but it needs to be confirmed that it is safe and inhabitable. The original mission was going to be commanded by one of the all-new, state-of-the-art, free-thinking Robonauts but due to doubts about reliability, or at least that was the official reason given. the mission was changed at the last minute. Rubin Fray's log. stardate, 24 23 2037. Time seems to pass so slowly in deep space, and yet it's the opposite because we are moving at warp speed so fast that the stars outside our cockpit window have become a complete blur. But hopefully, in the next six hours Quaver my robot assistant will drop us out of warp speed at the designated star map reference within a variable of three point seven eight. one point six eight two. We should be close enough to a planet known as E2. Or, at least that is what we hope it turns out to be before we colonise it. Or, at least that's the plan but it has to be explored and declared safe for humanoid species before that can happen. This is why Quaver and I are here to map reference the planet so it can be certified safe. The current scans seem to show all the elements that humanoids will need to survive and a few more besides but we won't know until we land and explore and reference everything. That will be Quaver's assignment, my onboard robot which is programmed to protect me from any possible threat. But advanced scanning of the planet's surface seems to indicate no obvious life signs apart from the occasional sporadic indications of alien wildlife. Which will have to be certified safe by the onboard ship's computer. But, it all seems very exciting for Quaver and myself. We are the frontiersmen of outer space. Explorers. Pioneers. Interplanetary space travel was always going to be problematic, however sophisticated the design was. The starship was the most advanced spacecraft ever built. It had been initially designed for Robonauts but at the last minute, the design had been restructured to accommodate an astronaut, regardless of how difficult it would eventually be. I suppose the overriding thought was that the Robonaut units were so far advanced that a free-thinking, all-purpose Robonaut could quite easily rewrite the whole mission and take over. And then the need for control by any organic intelligence however flawed and illogical it might be would never be able to outthink the most highly advanced and sophisticated humanoid style Robonaut. That was the danger. It was Taylor made for the deep space exploration project and humanoid addition would be a complete waste of oxygen and resources that might be carried aboard an intergalactic spaceship. That was always the main concern about the new prototype units designed for this specific purpose, it came down to a question of trust. At that point in the development of the inter-planetary Robonaut units, it was decided that there needed to be a shutdown switch or override device built in so that if there was any sign of the unit malfunctioning or attempting to rewrite its program it could immediately be shut down. This was a possibility considering most of the strategic planning had been written by computers. It seemed anything was possible. That is why Commander Frey had been added to the mission so that he would be in overall command and would make the crucial decisions. That was the reasoning. A machine was a machine at the end of the day. Developed merely for the gratification of humankind. I often wonder what it must feel like to be in the existence of space, weightless, just floating about in nothing, drifting around amongst the stars without a care in the world. No need to breathe, no need to feel anything, no anger, no frustration, no pain, no suffering, no nothing. Just to be there in that vast ocean of blackness gazing out at those distant planets so far away. That serene God-like gaze you would have when you look back at the reality you have left behind. All that anguish, frustration and sheer effort it took to cope with an illness that you have had to endure for all those years have gone in the blink of an eye. Life as you once knew it doesn't exist anymore and all sense of time has disappeared. The reality of what you once were has been left behind, millions of light-years away. Your whole being is just a flicker of light that you see when you gaze up at the stars. And then you wonder what the future might hold. But then you realise that there is no future because there is no time so the laws that used to apply don't exist anymore. So all that struggle and anxiety that you once felt has left you and disappears into memory. And all of a sudden you start to wonder if this is what it feels like to move on to metamorph into some other form of being. And then you realise it is nothing to fear and you just drift away content in the knowledge what you once were doesn't exist anymore and has changed forever. I opened my eyes. I was in a different time. On a different planet. An unknown shore. Is there anybody out there I thought. I was in a different time a different place. I was a traveller in time. I was stranded on an alien world, and yet it seemed so familiar, recognisable. light years away from anything I had ever known. a known civilisation with nobody to talk to. So I'll talk to you and play some music along the way. You're listening to Rubin's World. Have you any idea what desolation is? Still, I have everything I need plus more besides. But, it would be nice to have somebody to talk to instead of talking to myself. On this night of all nights, I looked up at the stars in the night sky and it was waiting to be explored. Waiting to be discovered. And I instinctively knew that one day I would find what I was looking for, a way forward. And, even if I didn't know what it was. That didn't matter, because it filled me with hope for the future and better days ahead. As one door closes another door opens and you enter a new space a new beginning. Rubin sat down on the top of his lonely mountain and looked around at his unknown world he was happy in the moment happy in his universe. Happy in his own time. Because he knew that love would carry him to where he wanted to be. And that's all it took. That one little thought. And then he was sure he could survive whatever this alien planet could throw at him. Love would survive. Rubin Frey looked out into deep space and realised how insignificant he was. And yet he was life itself. He was unique. A vital organic entity on a distant planet. What if a planet is a living organism and each planet is part of an entire entity and we are a microcosm of the entity? It was mindblowing and yet possible. Rubin was beginning to understand the Cosmos. He was learning each day and becoming aware of the fact that he wasn't alone because his world was life itself. A living planet. I started with nothing, I will end with nothing. Materialism means absolutely nothing. It doesn't mean a thing. The important thing is my spirit. Spirit to help me to carry on, that loves life. The human spirit within me. My humanity. Without humanity, I simply wouldn't be me. I enjoy opening my eyes in the morning and climbing into bed and closing them at night. I am happy in my skin. I have that strength of purpose, strength of will that helps carry me through the thunder and the rain. I live my life with gratitude. My life has taught me that. The most important thing is to have some relevance and to keep moving forward with optimism. I have enthusiasm for life and I look forward to a new tomorrow a brighter future but not before I've enjoyed today. I stand here grounded in reality. Living in the moment. My time is my universe. Hard but fair. Full of surprise and wonder. The place of my inner happiness. The unshakeable resolve that can carry me through and accept my fate without anger resentment or frustration. I have educated myself to live a life that very few would understand. A life without luxury and materialism. A spiritual life. A life of mindfulness and creativity. I life of clarity. I am learning about myself. Learning about what makes Rubin Fray the person he is. My spiritual self. My motivation. My inner world. My inner sanctum. My soul. The worst time is usually late at night. Those are the moments. I can hear the lost souls. I can hear everything. They hit you like a ton of bricks for no apparent reason. The normality of everyday life ceases to be of any relevance and comfort and your nighttime demons begin. You close your eyes and you enter the kingdom of the night. All you can imagine in front of you is the void. You have too much time to think. To wonder what might be? To worry and feel anxious about what the future might bring? And it's a scary place to be because you can see no future and no way forward and it feels like your whole world is collapsing and you've lost control of your positive thoughts and you feel lost and all alone. But it is natural to feel like that Isn't it? It's natural anxiety amplified when you consider all the narcotic drugs that you have to take to stabilise your condition. but it doesn't feel like that at the time. It can be very very scary. I know because I've been there quite a few times and I will go there again. You have to face that fear of the unknown look it straight in the eye and tell it to go away. Rubin Frey knelt on one knee and looked up to the stars. And he said a prayer to Andromeda. I am the universe. And, the universe is me. I am the stars. And the stars shine brightly all around me. Whatever was going to happen to me was always meant to be. And this is all there is, and all there will ever be. The universe is the brave shield, that protects me from all harm. And the brightest star in the northern sky shines down on me, and we shall be as one. For, I am the universe, and the universe is me. As Rubin looked up a gigantic meteorite flew overhead, and then he knew for sure that somebody was looking after him. Andromeda. Oh, sweet Andromeda. Thank you We are all on a spiritual journey to the top of a lonely mountain to find ourselves. To find out who we are. What we are made of. We are all travellers in time. We are soul-searching. Time will never stand still and you have to understand and accept the fact. The distance you managed to walk today may not be the distance you can walk tomorrow but that doesn't mean that you have to give up walking completely. You must be mindful of your actions and how far you go. Mindfulness and attitude are essential if you want to live a long life. You might be able to swim the width of a river but not the ocean. Nothing will ever stay the same and everything will eventually have to change. Change is inevitable because everything moves on. All things must pass. Dust will return to dust. A river may never become an ocean. But is still pounding like a heartbeat. Strength comes at the most impossible of times when you feel at your most vulnerable you find that your flame still burns and you are still alive. Still relevant. And you can find comfort and joy from the fact you are still in the land of the here and now. Admit your vulnerability. Don't fear weakness because it's part of your humanity. I looked up to the stars and I felt so small and insignificant in comparison. And we are all part of the same universe. A grain of sand on a distant shoreline. But we are all part of the same. Part of a vast ocean. Each planet is a grain of sand in a universal ocean. A grain of sand is as important as the desert that it came from. Water is as important as an ocean. We are all as one. Rubin Fray often wonders what it must feel like to be in space, weightless, just floating about in nothing, drifting around amongst the stars without a care in the world. No need to breathe, no need to feel anything, no anger, no frustration, no pain, no suffering, no nothing. Just to be there in that vast ocean of blackness gazing out at those distant planets so far away. That serene God-like gaze you would have when you look back at the reality you have left behind. All that anguish, frustration and sheer effort it took to cope with an illness that you have had to endure for all those years have gone in the blink of an eye. Life as you once knew it doesn't exist anymore and all sense of time has disappeared. The reality of what you once were has been left behind, millions of light-years away. Your whole being is just a flicker of light that you see when you gaze up at the stars. And then you wonder what the future might hold. But then you realise that there is no future because there is no time so the laws that used to apply don't exist anymore. So all that struggle and anxiety that you once felt has left you and disappears into memory. And all of a sudden you start to wonder if this is what it feels like to move on to metamorph into some other form of being. And then you realise it is nothing to fear and you just drift away content in the knowledge what you once were doesn't exist anymore and has changed forever Quaver sat at the control panel of the Andromeda while Rubin was fast asleep and began calculating a logarithm. And then another. And another. Quaver began calculating hundreds of thousands of logarithms simultaneously and at such speed that no human being could ever calculate or understand. And then he suddenly stopped. And the flight deck of the Andromeda was quiet again. Quaver began to answer his question. A smart Robot he thought could predict that a creator would want to turn it off if it made us nervous. So it would try hard not to make us nervous because doing so wouldn't help it accomplish its goals. If asked what its intentions are, or what it's working on, it would attempt to evaluate which responses are least likely to get it shut off and answer with those. If it wasn't competent enough to do that, it might pretend to be even dumber than it was, anticipating that researchers would give it more time, computing resources, and training data. So we might not know when it's the right moment to shut off a computer. We also might do things that make it impossible to shut off the computer later, even if we realize eventually that it's a good idea. There was a pause of silence and then Quaver muttered to himself, to be, or not to be, that is the question.

The most important thing you have to understand from day one of diagnosis with Parkinson's is that you can slow it down but you will never stop it regardless of what you do whether it is surgery, exercise or whatever because with the ageing process of life, your brain and body cannot be as good as the day before and that's a fact. We all age and cells die regardless. But it doesn't happen straight away. One day can feel like a lifetime if you want it to be. So enjoy the moment. Enjoy each day and live it to the full. And think about tomorrow and the day after that when tomorrow comes because you are not there yet. The biggest problem in life is that we worry so much about our future and we forget about today. So stop worrying about things that never come to pass and project yourself into the future because the future will take care of itself and what will be will be. And say to yourself I am the universe and my universe is me and whatever is going to happen to me was always meant to be and then you can smile about today and enjoy the moment because that's what truly matters in your life and nothing else. Right here, right now.

We are all on a spiritual journey to the top of a lonely mountain to find ourselves. To find out who we are. What we are made of. We are all travellers in time. We are soul-searching. Time will never stand still and you have to understand and accept the fact. The distance you managed to walk today may not be the distance you can walk tomorrow but that doesn't mean that you have to give up walking completely. You need to be mindful of what you are doing and how far you go. Mindfulness and attitude are extremely important if you want to live a long life. You might be able to swim the width of a river but not the ocean. Nothing will ever stay the same and everything will eventually have to change. Change is inevitable because everything moves on. All things must pass. Dust will return to dust. A river may never become an ocean. But is still pounding like a heartbeat. Strength comes at the most impossible of times when you feel at your most vulnerable you find that your flame still burns and you are still alive. Still relevant. And you can find comfort and joy from the fact you are still in the land of the here and now. Admit your vulnerability. Don't fear weakness because it's part of your humanity. I looked up to the stars and I felt so small and insignificant in comparison. And we are all part of the same universe. A grain of sand on a distant shoreline. But we are all part of the same. Part of a vast ocean. Each planet is a grain of sand in a universal ocean. A grain of sand is as important as the desert that it came from. Water is as important as an ocean. We are all as one

MY BEAUTIFUL BRAIN It would have been so easy to write about the negative side of my life but it isn't as bad as you might think as I get a great deal of pleasure out of my writing which I suppose is my emotional outlet in a way for what I can't translate into the spoken word. Self-belief in my ability to live with this condition is another determining factor because, without my mental attitude to overcome my disability, I would have probably collapsed in a heap and given in to Parkinson's long ago. But I found my inner strength the willpower and the spirit to carry on and overcome. When you look at the facts of living with Parkinson's it doesn't look good, but it isn't all bad either. In the early days, I didn't have to think about the problems I would have to face and shrugged them off and carried on with a relatively normal life. Parkinson's doesn't change overnight so you have time and that depends on whether you decide to look after yourself and stay as physically fit as possible. In the early days, I kept playing competitive sports for as long as I could and then I started cycling. I could ride a bike much better than I could walk. The main problem was getting on and off the bike because that was when I had balance issues. But I worked my way around the problems and off I went. Riding a bike gave me independent mobility for quite a few years because I was falling so much when I was trying to walk which meant that I started to use a wheelchair to get from A to B if I couldn't do it on my bike. And, if I was being honest using a wheelchair for my mobility was probably the worst decision I have made because I became reliant. The positive side was that I wasn't having as many crashing falls and hurting myself but the negative side was that the less I walked the harder it became. I began to freeze and lose faith in my ability to walk. I was freezing in doorways, falling off curbs, falling backwards and yet I could still ride my bike? It made no logical sense. And I stayed in a wheelchair for nearly ten years and I was walking less. But what was happening was that I was losing faith in my ability to walk. I was losing my self-confidence. And I thought to myself is this it? Is this my disabled life? My brain was slowly but surely forgetting how to walk automatically without thinking about it I was starting to freeze and seize up which created a lot of anxiety for me. However, I have always been a positive person and thought proactive about dealing with my Parkinsonian symptoms. So I sat down and figured it out. If I couldn't walk automatically without thinking about it I would have to tell my legs what to do and give them orders instead. So I started talking to my legs and telling them what to do. And the more I repeated the verbal commands the more my brain started to remember. I was re-routing the faulty signals in my brain from automatic to manual and it was working. And although it wasn't perfect it was good enough. I have restored my self-confidence in my independent mobility. I could walk again. And the more I was able to walk the less I had to consciously think about it the more natural the movement became. I had rerouted the faulty signals and restored my self-confidence.

SEVEN DAYS OF HOPE Parkinson's can become a prison cell so make sure you don't lock yourself in and throw away the key. Dopamine is converted to adrenaline, the body's stress hormone. Too much dopamine mixed with adrenaline is toxic The Journal of Parkinson's Disease published a peer-reviewed scientific study by Dr Jonathan Sackner-Bernstein positing that the standard way to treat Parkinson's might be precisely the opposite of what would be the most effective. The data show that instead of focusing on increasing brain dopamine in Parkinson's patients, a more scientifically rational approach would be to reduce the amount of dopamine within the cells in the brain that control movement. Data from the study of human brain tissue includes many different types of cells and the materials that connect and bathe them. Sackner-Bernstein's analysis confirmed the marked reduction in tissue dopamine, by 82% in the caudate and 96% in the putamen – the two areas of the human brain most affected by Parkinson's. However, the toxicity of dopamine relates to the amount within the dopaminergic brain cells, rather than the concentration surrounding them. To rationally select a therapy, doctors need to know the levels of dopamine inside these cells rather than what happens around these cells. This analysis reports that the dopamine levels inside these cells (called the cytosol) – the part of the brain cells where dopamine produces its toxicity – were higher than normal in the caudate and putamen of the brain in patients with advanced Parkinson's disease. Before this publication by Sackner-Bernstein, the amount of dopamine inside these vital brain cells had never been reported. Along with the elevated dopamine levels inside these cells, these brain cells in people with Parkinson's disease cannot protect themselves from dopamine toxicity. Thus, the toxic effects of dopamine are more pronounced on the very cells people need the most when suffering from Parkinson's. As Sackner-Bernstein explained, The function and viability of the nerve cells is what determines the severity and progression of Parkinson's disease. Because dopamine can be toxic to these nerve cells, scientists and clinicians cannot develop or prescribe therapies to reverse the disease without knowing the amount of dopamine within these cells. For the first time, these new data show us what is going on inside the brain cells that need treatment. The study's findings explain why treatments to increase dopamine don't slow or reverse disease progression. Sackner-Bernstein continues, There is already more than enough dopamine inside the cells. In some ways, using dopaminergic therapies is akin to whipping a tired horse it helps for a few strides but doesn't affect long-term results. Four laboratory studies report that blocking the production of dopamine within these brain cells improves cell function and keeps them alive. Such data in the context of this new observation of increased intracellular dopamine establish a new therapeutic path – one that reduces the average level of dopamine in the nerve cells while preserving the cells' ability to synthesize dopamine when needed. This approach can be tested now by using the drug metyrosine to partially block the synthesis of dopamine within the nerve cells. We've lived in the dopaminergic era since the 1970s and that has allowed millions of people with Parkinson's to feel some improvement in their symptoms. But the disease worsens inexorably. It's time to test a new approach, one based on firm science as highlighted by this groundbreaking publication. The clinical trial to assess the potential impact of blocking dopamine could start this year, concluded Sackner-Bernstein. Using drugs to increase brain dopamine has been the standard since the 1970s, when several studies showed that the total amount of dopamine in the brain tissue was low and several other studies reported that increasing brain dopamine levels resulted in rapid and noticeable improvement in mobility for patients with Parkinson's. Unfortunately, no drug that increases dopamine produces long-lasting improvement in symptoms. And none of the treatments in use today slow or reverse the inevitable worsening of the disease. Scientists have shown over and again that if brain cells have too much dopamine, this critical chemical becomes toxic to these very cells, causing brain cell dysfunction and cell death. Yet despite this risk of excess dopamine, before this study by Sackner-Bernstein, no one has reported the amount of dopamine within these brain cells. These findings have important implications on why current therapies are not more effective and on how to develop new treatments. What would you think if somebody said it's not Parkinson's you have too much adrenaline, you can recover? Well, that was the mind-blowing prospect that I had to rationalise and come to terms with when I first met Lilian Sjoberg a Danish Biologist and therapist who was going to help me find an alternate way of dealing with my stress condition. And it is a stressful decision I do not doubt that now but the medical world gives it the label Parkinson's disease because it is far more convenient and much easier to deal with on a broader scale. To begin with, though we had to try and find an initial starting point, and as far back as I could remember my very first stressful experience was when I was ten years old and in Junior school and my first recollection of feeling any stress or anxiety was when I was in a boys running race in the school sports and I was always brought up to believe that winning was everything and losing was a total failure. I got myself so wound up and nervous before the race had even started that I was never going to show my full potential and I finished second. That set the pattern for my anxiety and my inability to be able to deal with and rationalize stress. The trouble is if you go through your life thinking like that every little thing becomes an issue. The following year I had to sit my eleven-plus exam and I failed again. Everything that should have been a perfectly normal process to go through became a big thing and I put pressure on myself when in reality it didn't matter. But it did matter because what was happening although I couldn't see it at the time was that I was creating a situation whereby my young brain just couldn't handle the pressure and anxiety and stress that it was being put under, and it overloaded and manifested itself in a physical symptom with shaking and other health issues and that's how what we mistakenly call Parkinson's occurred in me. My stress levels in my brain were far too high so I started to develop health issues and that is the case with a lot of serious health conditions they all start with a set of little switches, and if you turn the right set of switches are turned on at the right time you develop health issues. But the irony of all this is that a lot of these issues if spotted early enough can be avoided. But we never do anything about it. And that's because it isn't in anybody's interest to, so we give it the broad label of Parkinson's disease, or Alzheimer's, or Dementia. because it's easier to deal with. And yet what they never tell you is that if you dig a bit deeper under the surface, you find out in a lot of cases a lot of the symptoms can be treated drug-free you just need to be able to identify the root cause in the first place. I've reached the point now in my journey where you have to decide as to which direction you want to go. Do you want to go in the traditional medical treatment of keep taking the drugs while they are still working and then up the dosage if something goes wrong until they just don't work at all? Or do you look for another way? Doing something as radical as I am attempting to do involves a lot of emotion and a great deal of self-reflection. And you have to open the doors to all those demons that you hoped you would never see again but they were standing laughing at me like they did all those years ago but, for some reason, it didn't matter to me anymore. After a while, they just walked away and all that movement in my body was slowly starting to feel a little bit calmer and at peace which is a feeling I can barely remember experiencing. You see you reach the point with the traditional way of treating Parkinson's where you just come to a dead-end because there is nowhere else to go and I didn't want that to happen which is why Lilian Sjoberg's theory made sense to me. Why should we accept that Parkinson's is a disease and why should we accept that medication and technological surgery is the only way? And I knew why. Because it's not profitable to prevent chronic conditions like Parkinson's from occurring and it's not profitable to find a cure we just keep rolling down the trail. The one thing you have to realize when you decide to go in this direction is that you cannot do it in half measure. If you are going to find an alternative way then you have to commit, in other words, you have to be prepared to alter the medication you are on, your lifestyle, everything, and it will involve a certain amount of discomfort. That was a difficult thing to do because I hadn't been used to committing myself to anything, but you know when something is right then it is right and that's how it felt to me. The biggest problem I have is with the dyskinesia and that is being fuelled by a combination of madopar and adrenaline so my body keeps going into hyperdrive. Near the end of the session, Lilian began to teach me ways of relaxing my body when I was feeling tense and nervous which will be important when I start to drop the medication. I feel quite unsettled about doing that but I know I have to and I got very emotional when we did a visualization because Lilian took me back to where my trauma began. I knew this wasn't going to be easy and that was evident the next morning when I felt like I was going to be physically sick again. All those childhood anxieties came flooding back into my head again and I started to panic over absolutely nothing at all. I kept telling myself that the sun would still shine and the moon would still rise but to no avail. I had to take my medication early to calm myself down which eventually started to work and I felt normal again. Stress-related illness can show all the signs of Parkinson's disease but isn't. When I got nervous or anxious I started to shake because I was in shock but that isn't Parkinson's. In my opinion, that's stress-related trauma. So from day one, I should have been treated for mental health issues but instead, I was treated for Parkinson's. But I was diagnosed a long time ago and they didn't have the knowledge that they have now. Stress-related illness can seem very much like other neurological conditions but in my opinion, they are completely different things. But somehow I have got to lower my adrenaline levels and the only way to do that was to burn it off with exercise. The day before had gone well because I had managed to do more exercise and felt good but lowering my medication level was going to be a problem. The only way I could go forward would be if I could get the level of dopamine down but it was going to be a very slow process. My high adrenaline levels mixed with the dopamine were proving toxic to my body and sending my legs into dyskinetic spasms, which was leading to more anxiety but it was a vicious circle that I knew that I had to break. I would have to try and face up to my demons by myself. Coming to terms with my childhood traumas made me feel very emotional and had brought to the surface all my insecurities so I knew that it would be wise not to take too many big strides forward too soon. But at least I had Lilian to advise me. I have never felt comfortable with the thought that I had an illness called Parkinson's disease and something at the back of my mind was telling me that I didn't have it all, which may sound ridiculous to some after forty-seven years of suffering from something, and then I met Lilian Sjoberg and my whole life changed because she opened my eyes to the fact that Parkinson's wasn't Parkinson's at all. What we call Parkinson's disease is forty or more illnesses lumped together with similar symptoms because it's easier to categorize them that way. What they are in the majority of cases are stress disorder conditions caused by various stress-related or trauma incidents in people's lives which can cause chronic illness as with what we think of as Parkinson's. But because it's easier to put all symptoms into one category it's labeled as being Parkinson's disease, when in fact a great many cases the symptoms can be treated without the use of medication. And so I've decided to make a life-changing decision of trying to prove that this is the case. That doesn't mean to say that I am rejecting medication completely because I accept the fact that I still have a debilitating illness but I need balance in the medication and approaching it as being Parkinson's isn't the way for me. The problem that I have with my severe dyskinesia seems to be caused by too much adrenaline in my body and so I need to burn that off with regular exercise. But also I have been put on a drug in the last five years called Madopar (Levodopa) and when you mix the two on too high a dosage it causes me to suffer from severe dyskinesia in my legs and so with the guidance of Lilian, I am trying to get the balance right. but I am convinced that it isn't Parkinson's but more of a post-traumatic stress disorder that has made me ill. Sometimes you have to follow your instincts and what you believe in and for some reason have been under the impression that I was suffering from a debilitating neurological condition something at the back of my mind kept telling me it was wrong. Although I show every symptom of having Parkinson's why am I still in relatively good health after forty years of having a debilitating condition such as this? All the indications and the symptoms were there but something seemed out of place, something was wrong. I just happened to come across a biologist and therapist by the name of Lilian Sjoberg who spotted something about me that no one else did. It wasn't Parkinson's at all I had too much adrenaline pumping through my body and mixing it with synthetic dopamine was making it worse. And after only one session of counselling, we unlocked the door to what it was. I had been suffering from post-traumatic stress disorder. I had been unknowingly making myself ill by worrying too many overtaking exams as a child and trying too hard. I was creating my stress and trauma trying too hard and making myself ill. I was in trauma and it was misdiagnosed as Parkinson's disease. And although I show a great many symptoms of having Parkinson's I don't believe it to be the case. I believe that the medication that I am now on is only making my condition worse so I need to lower it as quickly as I can. That doesn't mean to say I will recover but it does mean that I have much more hope for my future and I am so grateful for that. What you have to try to understand is that when I claimed that I didn't have Parkinson's, I never claimed that I didn't have a serious illness, I questioned the prognosis and it's quite obvious to everybody around me the cause of it. The reason why I have been ill for so long is that the stress and pressure of modern life have been too much for me to handle and I have made myself ill through worrying too much. And there's a message or even warning there because what it's saying is that if I can eventually develop Parkinson's through stress and worry as a teenager then how many long-term health conditions are caused as a result as well? And even more than that is the need to have a group like The Real Life Community so there is somewhere that you can go to take the stress out of your life and just forget about it for a while. And that is so important that you have something or somewhere that you can turn to that will help you get through it and it's unfortunate for me that I have had to go through this with the biggest problem I have ever had in my life and go public with it. But I'm so glad that I have because in putting myself through that intense therapy of self-reflection to discover the root cause of my illness I have shown the biggest danger to everybody's health and the desperate need for groups like this. The biggest problem I have ever had in my life is that I have always tried to suppress my emotions. I have always tried to hide them because I have always thought of emotions as being a weakness. But in doing that I have internalized something which can be a good thing in certain respects but in other ways, it can be a damaging thing as well because if the emotion is too strong and you internalize it can be difficult to control and it can be damaging. In my case, I internalized all my fears because I've always thought of fear as being a sign of weakness when in fact it was completely the opposite. You build up irrational fears as I did every time I took an exam because I was always so scared of failing. And the more it went the more it built and so by the time I had reached manhood that fear of mine manifested itself in me making me ill and developing symptoms that looked like Parkinson's when in fact it was just that powerful emotion that I had tried to suppress showing itself in a physical form and the harder I tried to suppress it the worse it became. But it wasn't just confined to exams it spread to other aspects of my life as well until by the time I had reached middle age it had become one of the dominating aspects of my personality. I started to worry about something before I had even done it and that puts my body under unnecessary stress which can lead to serious illness. I'm not exactly sure what is happening to me but for some reason, all those demons that were swirling around in my head yesterday have completely left me and I feel calm and at peace with myself and it feels wonderful. It's almost as if by facing up to my biggest fears I have banished them and I haven't physically changed a thing. My medication is the same but I don't feel the same person I was yesterday because I feel as if I've left all of my hang-ups anxieties fears and baggage behind me. And I've done that simply by going back and confronting what has been bothering me all my life but have been too afraid to confront. And that is fear. But is a natural emotion in any animal and it is a natural thing in us. We shake when are scared and we freeze. And that's what happened to me all those years ago. I got scared and I froze or in my case, I made myself ill over absolutely nothing. If I could have only understood that it didn't matter how I had fared in those exams very early in my life I wouldn't be where I am now. But in saying that I'm in a very good place and I wouldn't want to be anywhere else. But you have to go through those really bad experiences in life to find yourself and I feel so happy that I have been able to do that and now I can look forward to the road ahead without any fears and trepidation and not worry about a thing. I have been for a swim in the pool of honesty and I feel completely clean. I just can't tell you how that feels right now because I feel completely clear of the cloud which has been hanging over me which goes by the name of Parkinson's and it doesn't matter to me anymore and it's not important. What's important is that I've woke up from the dream that I was in and I've started to live again and appreciate the people and things that are around me. You see the thing is if you go through your life worrying about every little thing you will make yourself ill and I've been through that long dark tunnel and come out the other side. And now I can see sunshine and colour and love and music and art and life outside in the daylight just feels incredible. But you have to go through that kind of experience to find out who you really are and I've found myself now and just feel very emotional and very happy. Thank you, Lilian Sjoberg. I will always be eternally grateful to you for showing me the way. The trouble is we just don't see things for what they are and we make a mess of it. I have spent most of my life searching for peace and tranquillity and just to feel calm again. To feel still again and not move a muscle and just be content and float away on the breeze and feel happy. But to feel like that the stars have to align and you have to be lucky it didn't happen for me for a long time but now I feel that I'm on the right track. You see the key to well-being and good health is destressing as much of your life as you can and taking the angst out of it because too much stress can make you ill and I realize that now. Modern life is bad for us all, it's toxic and should come with a public health warning but it doesn't so we get on with our modern lifestyle and accept stress as an everyday occurrence but it's not because it is a killer waiting to pounce and if you get too much of it you will make yourself ill as I did all those years ago, but all this could be avoided and a great many medical conditions could be eradicated if only we could see it. It has been a really difficult process in psychoanalyzing myself on social media and exposing my inner fears and anxieties but I felt it was important to show what the root cause of my illness is. And it is a stress-related illness I do not doubt that, which has elements of Parkinsonism but is in no way what we know as Parkinson's disease. It's very similar but not the same. My symptoms have been caused by anxiety and irrational fear of being a failure and I know that now but it was misdiagnosed in 1987 and there is absolutely nothing I can do about that now. I've been like a wild animal who has been frozen with fear and just keeps shaking because he is scared and it's as simple as that but because of the wrong prognosis I have been allowed to believe it was Parkinson's disease when it wasn't. All my problems started when I internalized my inner fears and anxieties and I've never been able to talk about them, they have just become a monster and made me ill. But now I have confronted the cause of my condition I going to try and repair some of the damage I have done to myself by trying to get as well as I possibly can. What it has shown to me is that I went through my life with two completely different personalities. On the one hand, the extrovert Rob Keene who always loves the limelight and is very personable and easy to get to know who hasn't a care in the world, and the introvert and very insecure Rob Keene who literally worries about everything in life however small and unfortunately for me this became the dominant side of my personality. But in a way it has done me a favour because having put it in the public arena, I now feel a great sense of relief and chastisement that I have got it all out so that I can move on but I know that it will be a very slow process. You can believe whatever you like but in my world, that's what I believe. I have created an illusion in my head that I am chronically ill and that is what I am. I have made myself ill by thinking that there was something wrong with me when in fact the only thing that was wrong with me was the way that I was thinking. And it is as simple as that. But you have to get your head around it and understand what I am trying to say. You can make yourself ill by simply believing that you are ill so don't think it. It's just a simple mindset. But it isn't our fault because what happens is we go to our local hospital and we tell them what we are thinking and they are only too willing to confirm it because it is in their interests to do so. It's really strange how somebody's life can pan out because I have lived most of my life worrying about failure when in fact I should be looking forward to success and I just stopped enjoying my life because I was always worrying about what might go wrong and its thinking in a negative way like that which has created so many problems in my life which I could have otherwise have avoided and it's only when you have been through those kinds of situations that you realize how important your life is so don't waste it. After all my insecurities came flooding out Lilian Sjoberg arranged to speak to me the next day to calm my fears about taking less Madopar and I felt much more comfortable that I was doing the right thing because I couldn't keep going down the same old route. After all, in its way, the medication was making me worse so the first change was going to have to be made I knew in the short it would make my condition slightly worse but I was ready for that and I knew that I would still be ok. Lilian spent the majority of our Zoom session calming me down with visualisations of my past life and discussing the root causes of my initial anxieties and fears which was helpful because then I had ways of calming myself down when I had those anxious feelings which would be so important in the future but first I had to get the level of dopamine medication down to see what was actually underneath it all. I was starting to see a structure to what Lilian was proposing to do and it was starting to make perfect sense but I had to get my dopamine levels down to see what was underneath so it would take time to initially do that but I could see the logic in it all and my confidence was coming back but I still had to take that first step and until I had taken that first step then everything would stay the same. But I kept telling myself that little roads lead to big highways and then I would be sure which direction I was going to be heading, and there was something about Lilian Sjoberg that reassured me that she knew what she was talking about and she knew she was right. The way we currently look at treating a condition like Parkinson's was completely wrong in the dark ages. What we needed was a completely different approach and a way that is a lot more sustainable for the future of humankind. We can't keep going down the road of drug society and keep swallowing pill after pill after pill. There had to be another way. Most people can only see the negative side of Parkinson's, the day-to-day drudgery of constant medication and the struggle for functionality but over time you will become aware of the positive side of Parkinson's and there is a positive side do not doubt it. It takes away functionality but it gives you creativity. The brain has a way of rerouting signals and what was important before you were diagnosed doesn't seem quite as important anymore. I had clarity in my life and it felt as if I had dismissed my Parkinson's symptoms with one swish of my hand. That is all it took. I pushed my symptoms into the corner of the room and made the most of the day. It was never going to be perfect but it was good enough. That was the point. It was good enough. And I smiled to myself because I knew I had turned a corner in my life and I had found a new beginning. Robert James Keene January 2024