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