THE JOURNAL OF ROBERT JAMES KEENE
JULY 2023
I stood on the green carpet of grass and looked up at the vast expanse of blue sky above my head and I felt so happy in that one little moment of time. I had finally found my spiritual home. This was my connection with Mother Earth. I was where I wanted to be. I could have been the last human being on the planet and I would have been happy in my own company. I could hear my own thoughts, the beat of my heart, and I knew that I was alive. I could hear myself. I knew who I was because I realized how frail I have become over the last few years and how important it was for me to enjoy the moment and be grateful for what I still have. I had finally found humility. A state of grace within myself and whatever followed was meant to be and I would accept it with open arms. I had thrown away materialism and embraced the natural world. I finally understood the meaning of life and why we are still here. I could listen to my own thoughts and follow my own path. I had clarity. I knew the reason why we make ourselves ill and that's because we are traveling too quickly in every aspect of our lives and we are living life far too fast and we need to slow down and start walking again.
Parkinson's changes the way you look at your life. It has to. And, it becomes a different life full of problems and challenges as your physicality and mentality decline. But it's how you approach and deal with it that matters. Are you going to swim against the current and fight it? Or are you going to try a different approach and attitude and swim with it? But whichever route you try it's not going to be easy because it's going to be constantly changing and adding new problems for you to deal with and solve. And, whilst you're having to come to terms with that, you are also trying to live your life, possibly with a family, and deal with the stress of that, and you find that instead of having to walk up a slite incline you have to climb a mountain instead and it starts to become a little bit harder and more energy sapping. However, it's not all bad because Parkinson's teaches you things as well. It offers you little rewards. Your perspective of life alters a
Patience is a wonderful thing to possess because if you have patience you can slow life down and appreciate and understand what's happening around you. And that's the biggest problem in modern life today. We are traveling at light speed and burning ourselves out before it should be our time. We are making ourselves ill without realizing it. Life has become a blur and has passed us by before we've had time to realize what has actually happened. I realized that when I tried to remember what had happened to me in the last ten years and I couldn't remember any of it. That was when I realized I had to slow my life down otherwise it would just pass me by. I took a drastic step out of my high-speed life and simplified everything and slowed myself to absolute necessities. And do you know what? I feel much better about it. And although it wouldn't suit everybody it makes absolute sense if you have Parkinson's or any other neurological condition for that matter. My advice to you is to get off your high-speed train and learn to walk again.
Every day is a new day, a new adventure, a new beginning, and I never second guess what is going to happen because you never know how each day is going to turn out. But no day is ever the same, which makes every single day a challenge because I always look forward to them. I think to myself that each day must be worth something so I go into them hoping that they will be interesting and hopefully rewarding. And that comes down to attitude because attitude, gratitude, and humility are the most important things that make up the ingredients of a good day. But every single day is what you decide to make of them, and I try to go into them with optimism that something good might be found because I know that if I can go into them in the right frame of mind then they might turn out to be a very good day.
I know each day now that I have to say focused in order to stay positive about life because as the days, month's years go by and your Parkinson's slowly worsens as it inevitably will do, you have to be realistic about the things that you are still capable of doing. The worse thing would be to try to do the impossible because you will almost certainly end up on the floor both physically and mentally. But we are all different and we all have different capabilities but I would suggest that it might be an idea to be sensible and not stupid. There are limitations so don't push yourself too hard otherwise, you might end up in a hospital bed, and that would be the last place you would want to be.
Cycling for me a few years ago was an absolute necessity. In the late seventies and early eighties, there were no battery-powered scooters or wheelchairs, everything was manual and you had to do it yourself. I had no internet or a mobile phone. I was living in the prehistoric stone age, in terms of Parkinson's awareness and I had to figure it out myself. In fact, in many ways, it was the only way I could transport myself because I spent most of my time falling on the floor. It was never suggested to me or even considered by any neurologist or physiotherapist and that was simply because they didn't believe that I was capable. But it's not always easy to go against professional advice because they were worried that I might damage or hurt myself. I think I lost confidence in my own ability to walk which sounds ridiculous, but if you are convinced you have a problem, then you have a problem. And so I was put on Parkinson's medication to help with that and in some ways it did, but it also caused me other issues as well. Mainly psychological ones. If you are told enough times that you have a certain neurological condition then you are going to believe it even though at the back of your mind something doesn't feel quite right. But who are we to question neurological reasoning? Everything you are being told makes sense, and you show all the classic symptoms but something doesn't feel quite right and you don't do anything about it because it's easier to go along with it. It's easier to keep taking the drugs and believing they will help but do they? After forty or more years of thinking that I have been suffering from a serious neurological condition, I am beginning to have my doubts. There is no denying that in a lot of ways I show all the classic signs of having Parkinson's but there are certain aspects that contradict that theory. How is it that I lose my balance when I am walking but I am perfectly able to balance and ride a bike? I have absolutely no problem at all with that but it doesn't make any sense. Riding a bike is a confidence thing and so is walking but a few years ago a had no confidence in my ability to be able to walk so I stopped. But, the problem is if you stop doing something on a regular basis then those neural pathways forget and the brain starts to become lazy and I am starting to think that it might have happened to me. I convinced myself that I had problems with walking and balance and I stopped doing what came naturally. You convince yourself that you can't walk and it becomes psychosomatic. And then everything changed because I decided that I had to do something about this. So I started talking to my legs and telling them what to do. This may sound absolutely crazy but that's what I did. And the more you repeat something the more it comes naturally to you again. The neural pathways start to remember and repair themselves and find other routes to carry out the same task. A few years ago I attended some classes arranged by the Peto Institute from Hungary in Birmingham in the UK and they followed exactly the same theory. You have to reeducate your brain to start doing things again because repetition is the key. And look at me now I am walking again.
I have been roaming this planet for nearly sixty-five years searching for something that I could never find when in fact it has been there all the time. And that's because I was looking in the wrong direction and if only I had been able to open my eyes I would have been able to see it.
And that's because I didn't know or understand what I was looking for. But now I understand and can appreciate it for what it is. And it's Me. I have found myself. And I am grateful for me. Myself. I. I suddenly realize how important I am to myself and to others. And I have finally come to understand my true worth and value to myself and how important I am to other people. And that's because we undervalue our own lives and we don't realize how important we are to ourselves but we should because if we don't learn to look after ourselves and love ourselves then how can we share it with other people.
Sometimes I think we worry too much about the things that aren't worth worrying about which is why I don't join any Parkinson's groups on Facebook now or post any of my writing simply because they are full of misinformation negativity and would make me feel worse, not better. And so I keep my writing now for the people who want to listen, but more importantly want to learn something from my experience of Parkinsonism because it's not all bad as some people on Facebook would have you believe. Every little black cloud has a silver lining so you should never think that living with Parkinson's is all bad because it's not. The fact of the matter is that it can be whatever you want it to be and if you want it to take over your life and think about it all the time then go ahead but my life has never been like that and never will be. My life is more than Parkinson's will ever be. We paint this terrible picture that to have to live with Parkinson's is so bad that their life has more or less come to an end and they cannot see a way forward. Well, why is that? The reason is that you are not thinking with your head, you are thinking with your emotions. So, give yourself time to consider what you have to do and how you are going to respond but more importantly what you will need to change in your lifestyle in order to learn to live with it. Because it is possible as I have proved. Living with Parkinson's is not the end, it's the start of a new beginning, so get used to the idea and find a way forward, and don't look back. Be proactive and make it happen because you are your own universe.
As each day passes by now it gets a little bit harder because Parkinson's never stands still and it keeps taking a little bit more out of me but after nearly forty-eight years of showing signs of Parkinsonism, nothing surprises me. It's a very slow process and you hardly know it's happening until something changes and another symptom comes along and then it's a case of solving another puzzle and making the necessary mental adjustment. But I know exactly what is happening to me and understand the endgame, but who knows when that might be? And, until that day comes I will enjoy each day and not think any further than I have to. My universe is always here for me.
I was born in the year nineteen fifty-eight which means that I have lived on planet Earth for nearly sixty-five years, which is a lifetime for an astral time traveler. And when my earth body dies I will pass over and move onto a different time a different place. And then my spirit will begin again. That is my true belief. We all have a spiritual soul within us which lives in the shell of the living body and when we pass away and the physical body dies the spirit of the body lives on in time and space to find another host and we live our lives as one. The spirit can never die and lives on for all eternity. The end is only the beginning because the spirit of the soul is neverending and the true path to righteousness. That is what I believe. The spirit has no dominion and will live again in whatever form of religion you have faith in. THE END IS THE BEGINNING OF ANOTHER TIME AND SPACE.
A new day begins with a tangled sticky web spun by the early morning spider stretched on the silver lace of a waking hedgerow.
The dawn chorus sounds its glorious bird song while the seasoned oak tree creaks as it sways to the will of the westerly winds.
JUNE 2023
You quickly come to realize if you are diagnosed with Parkinson's that you are not living alone with it because you are part of one big family, a worldwide community that suffers with you, understands, and inspires each other to get through each difficult day. BarcelonaWPC 2023
When I came into this world I came into it for a reason regardless of whether I had Parkinson's or not and I have always tried to be the person that I have wanted to be regardless of my disability. And that's how I have always approached my life. I have tried to live a normal life. I've married and raised a family regardless of my disability. It's not been easy but I did what I wanted while I was able to, because life is what you make of it regardless of whether you have Parkinson's or any other disability for that matter. You must never stop trying to do the things that you want to do. And if you don't succeed, try again. And if you can't do what you want to do, find something else to do instead. The world is your oyster with no limits. The only limits are what you set yourself.
I can think of nothing worse than being diagnosed with young Parkinson's. Absolutely nothing. I was lying on my bed on a warm summer's day when my whole future seemed to be swept away in a few seconds by a television documentary. Or at least that's how it seemed at the time. I felt devastated. I couldn't speak. I couldn't move. I was in shock. I had been blown out of the water in a few seconds, and I couldn't think of what to do. And yet years later everything seems crystal clear. Parkinson's is part of me and has always been part of me. And within an instant, the pain, the anguish, the anxiety, the despair, had disappeared with one swish of my hand. I realized why I was here. I was trying to come to terms with myself, who I was, why I was put on this planet, and most important of all, what I was suffering from. There was no bad luck, It was meant to be, and there was nothing I could have done to prevent it. And as soon as I understood I knew why. And it seemed such a simple thought after all these years of worry. It had been lying there dormant all this time. And then it felt like I had been released from my prison cell.
Parkinson's has taught me more about myself than you can imagine, and I am so grateful for that. I saw my life in black and white and now I could see it in brilliant technicolor. I became a vast ocean. And, the little things in my life became gigantic. A cup of tea transformed itself into a sparkling glass of champagne. A simple piece of toast became a salmon sandwich with cucumber. And suddenly my life was in focus and I could see. I was beginning to understand the reality I would have to live in. It wasn't about being healthy, It was about understanding and acceptance. I used to think my life changed course at nineteen but in reality, it had already begun. This was my journey. There are a lot of things you can alter in life, but there was nothing I could have done to prevent this. So all the years of struggling to come to terms with me and trying to understand why have helped me out of that dark tunnel of panic, anxiety, and worry about the future. It's the reality of disabled life and coming to terms with it.
Real life is supposed to be difficult and challenging. Where everything is constantly changing, and never the same. Anything worthwhile should be appreciated. Nothing is finite and everything ceases to exist and passes away. But the big wheel keeps turning and should never be taken for granted in any way. Though sometimes it feels like real life is undervalued and never given credit. But we never see it in that way, and it passes us by in the blink of an eye. That's how it should be and always will be. It's a monochrome reality but should be in color.
There's a very big difference in the way I think and the way others think because I don't think that I have to live with a disability, it's the disability that has to live with me.
Life can be very dark and difficult at times when you get that intense feeling of loneliness and isolation and depression. And, that's when we are at our lowest ebb. And, it's a horrible feeling for anybody to experience because we feel vulnerable. And it's in these moments when we all need to feel love. And love can come in many ways and you can find love when you least expect it. And it's a truly wonderful feeling. A beautiful emotion when you feel a warmth inside, a glow that you have probably never experienced before and may never experience again because you bond with someone. You make a commitment to somebody that will last until the day you die. It's a spiritual commitment that has to mean something. And if it's unconditional love then it will last forever and you will have absolutely no regrets. Love can make you feel happy, feel secure, feel confident about your life, feel loved. And is something that we all need to feel because it makes us feel good about the world and the people in it. And if you can experience love then you can can feel an inner happiness inside which is the essence of life that we all need.
Life is a love story. A lesson in love. And, if you find love make sure that you don't give it away. Love can break your heart if it happens that way. Make sure you don't regret it until you find love again. Love is a lesson in life that we all have to learn. Love can break your heart every second of the day. And don't be too surprised if love happens that way. Love can be eternal until the end of all time. Love is neverending when two hearts become one.
My body runs a marathon while you run a mile. And that is what Parkinson's does to you. It keeps pulling all the plugs out until you are running on empty and then you have to try and run on fresh air so beware! It takes no prisoners and spares nobody.
I can sink down to the depths of despair and that can happen for absolutely no obvious reason and there doesn't seem any way back. And I sat on the edge of my bed and I cried and I nearly threw up because I was having a panic attack. There was no logic to it because there was nothing obviously wrong with me but I felt as if my world had collapsed. And I felt ashamed of myself and guilty that it had happened to big old strong Robert James Keene. And those are the moments when life confronts you and stares you right in the face and asks you the question. Those are the moments. Time will shape everything. I will always be me.
It doesn't matter if you shake. It doesn't matter if you freeze. It doesn't matter if you shuffle. It doesn't matter if you stutter. It doesn't matter if you forget. This doesn't matter one little bit because the only thing that really matters is you.
The first person past the post isn't always the winner. The real winner is the person who gains the most from the experience and keeps on improving as a consequence. The fact of the matter is that you can be the first to finish but there is no way of improving on that which can only lead to frustration and a lack of motivation. Why rush today when you can finish whatever you might be doing tomorrow. And by giving yourself a little bit more time and making a better job you get more satisfaction and a sense of achievement and ultimate fulfillment. A wise man doesn't rush he takes his time.
The first person past the post isn't always the winner. The real winner is the person who gains the most from the experience and keeps on improving as a consequence. The fact of the matter is that you can be the first to finish but there is no way of improving on that which can only lead to frustration and a lack of motivation. Why rush today when you can finish whatever you might be doing tomorrow. And by giving yourself a little bit more time and making a better job you get more satisfaction and a sense of achievement and ultimate fulfillment. A wise man doesn't rush he takes his time.
When I wake up every morning I look out the window and if I feel good then I can look forward to the new day. It's a process that I have to go through to make sure that I can justify and have validity. Because without those two elements, I wouldn't have relevance or strength of purpose. I have to know that I can do something useful and worthwhile or make a difference to humankind or else I wouldn't have a reason for being here. Life is a series of questions that I ask myself each day and somehow I have to come up with the answers and solve each problem. And that is what Parkinson's life is. You have to keep asking yourself questions and finding the answers.
Parkinson's has given me clarity of thought and brought everything in my life into sharp focus. And now my appreciation of the most trivial of things isn't trivial anymore because it's become important and essential. I look at things through different eyes. I appreciate everything that's important and I don't take anything for granted. I prioritize the things that really matter and I maximize my potential. Nothing is wasted and everything is used to its maximum potential. I squeeze every single drop out of everything I am still able to do and most important of all I don't waste any of my time. And that's because time has become a precious commodity, time is essential and without it, I would be lost. An hour seems like a minute, a day seems like an hour, and it feels as if it's speeding up but in reality, it's ticking along at the same speed. Parkinson's has literally put a time fuse on my life which can go off anywhere and at any time. I have lost control of my own agenda and now I am having to follow a completely different course in life, non of which is my own choosing. But as my late grandad always used to say You get what you are given and you have to make the best of it. And he was absolutely right because nobody is in control of their own destiny because it's spontaneously being mapped out for me. My life has turned into a river with its fast-flowing current which I have no control over and I'm having to follow its course. But you have to accept it because you have no choice in the matter and you have to flow with it, otherwise, you make your life harder than it has to be because you try and swim against the strong current and you end up getting nowhere fast and wearing yourself out. But free thinking and wisdom like that only come from making mistakes in the past and making sure that you don't make them in the future.
Modern life is being able to look at yourself in the mirror each morning and tell yourself that things are going to be alright. If only life was as simple as that, but it isn't, is it? Because life can be as complicated as you want it to be? And I don't want my world to be like that anymore because it's full of people who tell lies about themselves and the people around them, have become false prophets, and above all else lack honesty. And in my world, that's the most important thing of all. You have to be able to be honest with yourself and the people around you because if you can't do that then you might as well be living in hell on earth which you have created for yourself. No, that's not the world I want to live in anymore because you're living like a parasite and you are feeding off other people with lies and deception to survive. No, I'm not going to have that in my world because I may not be the most perfect human being in the world but at least I'm honest with myself and the people who come into contact with me. I know I have a lot of faults but I don't try and hide them from myself and the people around me I hang them up on the dirty washing line for everybody to see. I cleansed my soul of dishonesty and I feel much better for it. I turned myself into a dreamer and a poet and a lover of music and the beautiful colors that are all around me and if that's not living in the real then I just don't care anymore because if it gives me and the people who come into contact with me an honest headspace where they can live with themselves then I know that I have got the ingredients in my world just right.
I stood on the edge of nowhere and I looked down into the void and there was nothing. But something compelled me to go down there and find out to convince myself that I wasn't afraid. And it was a big decision to make because I wasn't sure what I might find or whether I would return. I was at a crossroads, and I had to make a big decision. I could stay where I was right now and feel perfectly safe and not have to worry about anything. But the fact of the matter is that nothing would have changed, because I would still be in the same place and not made any progress in my journey. Whereas if I explored the possibilities and took a chance that everything would be alright then I might find a way through then it just might be worth it. And then I realized what this was all about. I had to sacrifice to gain. It was worth taking the risk in order to benefit the greater good. And this applied to everything because I realized that you are never going to move forward if you are not prepared to take a risk. I had to trust in myself and my own abilities and believe that I could find a way to make it through. And carry on with my journey. In order to progress you have to be prepared to take a leap into the dark and risk everything in order to gain and progress. That's the pioneering spirit of curiosity. And go where no man has gone before. You risk everything in order to gain something. Living with Parkinson's is exactly the same because we are never going to move forward and find a cure unless somebody is prepared to take a risk and be the first to try something. You risk losing everything in order to gain something. You become a braveheart.
I love the sound of nature, particularly in the morning when my senses feel heightened and refreshed, and ready for the start of a brand new day. I hear the clarity of nature from the wonderful birdsong to the buzzing of the busy bees and the beautiful sound of the sycamore trees as they rustle bend and sway in the breeze. And I treat them all with the respect they truly deserve. I am in tune with myself. I am at one with my natural surroundings. I feel confident. I feel calm. I feel refreshed. I am at peace with my world. I have found my Silver Star. I have found my perfect place. I look up at the deep blue sky above me and I know that I'm alive. I could reach up and touch the stars. I could get down on my hands and knees and grab the soil in my hand of mother earth and feel as one. I have a connection between myself and my natural surroundings. I have connected with the heavens, the stars, and mother earth I have found my sacred place. And when I am in this place Parkinson's means nothing and has been absorbed and accepted as one and holds no fear to me because it is now part of me until I die and leave this place. My mind accepts absorbs and feels no pain because pain and suffering are part of my life from now until the end of my days.
I was sitting in the back garden today and I had an incredibly out-of-body experience because of the deep blue expansive sky. And, I felt so insignificant and small in comparison to the cosmos above. And it was a thought-provoking moment in my life because I realized how irrelevant and unimportant Parkinson's was in the scheme of things in comparison to the vast ocean of knowledge above my head. And I felt like this tiny little fish in space, and it put everything into perspective. We think of our lives as being important when in reality it means absolutely nothing and is totally insignificant. And we think we are in this massive expanse that we call the universe but what then? And that is the big problem in life because most of us can't see further than the end of our nose and we live in our tiny insignificant way when in fact there is more to life than we could ever dream of or even understand. But we carry on believing that our tiny little world 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 it might be. That doesn't mean to say that I am trying to devalue life on Earth in any way because I'm not. But, a wise man doesn't dismiss he tries to learn and understand. That is what pioneers do they explore and learn about what we don't know, and maybe that is where we will eventually find the answer to all of our questions.
I sat in God's garden and it was so beautiful and green. And life was magnificent in my time machine. And Parkinson's was banished and never returned. In God's little acre on my little world.
You come to realise very quickly when you are diagnosed with Parkinson’s that the most important time is now so live your life the best way you can for as long as you can with no regrets and you will have lived your life to the full.
The mind is an incredibly intricate piece of machinery because it can do almost anything you want it to do providing it's working properly, but when it goes wrong? What then? The fact of the matter is that there's no neurologist that can fix them. Well, they can tinker with them a little bit and probably get them back on the road again but they can't fix them. The problem is that we don't live in a perfect world and I was probably faulty from day one, but thank God I didn't know because I wouldn't have made the effort in the first place. But I was here now, or to be more precise, Robert James Keene came into this world on the first of August nineteen fifty-eight and things were looking great and I was doing pretty well for a few years until something started to go radically wrong in that command center of mine that we call the human brain. But it's such a slow process before anything becomes even slightly noticeable, but then again we are talking about the 1970s when there were no computers and no internet. In fact, Parkinson's disease was seen as something that you might suffer from in your later years, but nobody ever thought that you could show symptoms of the illness in your mid to late teens but that is what was happening to me. Of course, it is only by reflecting on those early years that I realize now that those were the earliest signs.
The thing that I tend to forget and should remind myself more often about is that I am trying to live in a different world to a normal person where the rules don't apply to me. And perhaps I should remind myself also about the fact that I have a disability and everything in my world is completely different and not normal. And that's no disrespect to a normal person because they have problems to overcome as well, but the world that I have to live in is a different world where normal rules apply. So my disabled world is trying to fit into the normal world full of normal people and we have to improvise in a lot of ways. And whilst there are disability-friendly places in the normal world where disabled people can congregate in a disability-friendly playpen where we can feel perfectly safe and not discriminated against well that's great. But, it's difficult, to say the least, and usually involves compromise in the normal world. This isn't always appreciated by normal people because there is a minority who think that a disabled person is being given preferential treatment and the normal world is being discriminated against, which is a perfectly valid argument and totally understandable. So maybe a future solution, when interplanetary space travel is perfected and we have a few more planets to choose to live on that it might be a revolutionary idea to have a disabled world and a normal world with equal integration. And then there will be no more squabbling between the normal people and the disabled people and we will all live happily ever after.
From the very first day, I realized I had Parkinson's I have always had enthusiasm for my life regardless of how difficult and challenging it would become. And, it is important to realize that, because if you don't then you are going to find living with it challenging to say the least. But I have never thought like that and never will. In the forty-seven years I have known of it I have never let it overcome me or deflect me in my life journey and I have always found ways to overcome it. Because if you give in to it you will never lead a full life and you will build barriers in front of yourself that are of your own making. You think you can't do something so you give up before you even try. You build your own mental barriers and you become confused and disorientated as to what you are still able to do and achieve. It will try to smother and overwhelm you but you must never let this happen and you must fight back because if you don't then Mister Parkinson has won the day. But, he hasn't won the war so you have time, so use it well, which is why I have built a mental shield to defend myself. It's my mentality to live with Parkinson's because it shields me from mental frailty and makes me feel invincible. In other words, I have built myself an invisible mental shield to defend myself. And, as far as I am concerned as long as I have my mental shield then I can withstand anything and will always be victorious.
I looked at the back of my hands, and they looked wrinkled and old. There was no doubt about that. The skin reminded me of my grandad who had wrinkled hands which fascinated me because I couldn't understand why the skin on my hands was so tight yet Grandad's looked so old, loose, and wrinkly. I used to laugh with him because he'd joke that he had put the wrong size skin suit on this morning. Grandad never took age seriously until the day he died and then it was too late because time had passed him by and moved on. The hours, days, weeks years pass by and I hardly noticed until the day that I looked at my hands then I understood. I'm getting old. I'm aging far too rapidly. I feel old, and yet it didn't feel like me. I sat down on the sofa in the back room of the house and looked up at the crack in the ceiling. The house was getting old for me. It was one o'clock in the morning when I really should be in bed, but I felt compelled to write while I could remember because if I climbed into bed my mind would fall asleep and the memory would be gone. My personal memories were slowly but surely becoming covered in cobwebs so I needed to write them down before they disappeared completely. Time was speeding up or I was slowing down and I realized that it was me. Old Father Tyme was winning the race and I hadn't arrived at the start. I was decaying into dust right before my eyes and it was unnerving. How could this be? My life was flashing by in a purple haze and there was nothing I could do about it, absolutely nothing. I was starting to think about the relativity of time with great clarity. I looked up at the clock on the wall and it was screaming at me, loud and clear but how could this be? The clock had come alive and it was talking to me. It wasn't possible, and yet it was happening in my own reality. Good Old FatherTyme had decided to talk to me. But what was he saying to me? I couldn't understand. But Einstein's theory of relativity made perfect sense. I looked up at the hands on the old Grandfather clock and they were going backward. So what had changed? Time was going backward and yet remained the same so what had changed? What had changed? The reality was that nothing had changed, and I felt so disappointed because I was half expecting some kind of miracle to happen and end up being a child again with my whole life in front of me. But that would be asking too much, wouldn't it? I sat for half an hour or so to contemplate what had just happened but I was sure if it was real, besides which I couldn't stop yawning and needed to get some sleep. And then I started to doubt myself and questioned my own sanity. I had to be sure but I was far too tired to think about that and needed to get into bed before I collapsed in a heap on the bedroom floor through physical exhaustion. Had I gone back in time or not? Those were my exhausted thoughts as I collapsed in a heap on my bed in the early hours time factor unknown. But whatever time it was and wherever I might be I was far too physically and mentally exhausted to think anymore and was completely switched off from my current reality so whatever fate might be waiting for me would have to wait a little bit longer.
The essence of the day is always at the beginning because it starts with the purity of the mind and soul. And if you can experience that then you are halfway to the promised land, and everything else for the rest of your day seems golden.
There is something really special about the silence of the early morning of a new day that is soothing and so calming, so spiritual to the senses that you wish it could go on a little bit longer, but reality decides to intervene and wake you up and the magic of the morning hours is hidden away and is gone within an instant. But this is the best time of the day because it is fresh and offers new beginnings. A day in which we can contemplate and reflect, and look forward with enthusiasm and optimism. And although every day might have its challenges and questions to ask, no day is ever the same. And, because of that, each hour of each day seems to last a little bit longer. And there is always something in each new day that is rewarding and makes it worthwhile but more importantly worth remembering. And so we go into each new day and we should try to enjoy them, and look forward to the next one as we did to the one before. Because each day could be a special day and should be celebrated as that.
I have a spiritual awareness of myself now that I've never known or experienced before in which I've discovered a universe within me, which is so vast, so infinite that anything seems possible. If I reached up to the stars I could touch them. I could swim to the bottom of the deepest dark ocean. I could fly like a golden eagle. And that's because I have clarity where all my senses are enhanced and grounded by the natural world around me in which Parkinson's is a microcosm of nature and nothing more. Parkinson's restricts my physical body but it can never control my mind and that's where my hidden strength lies because if you have the strength of mind, the strength of purpose then you can live with physical discomfort, which is what I do. I do it without the help of science or technology and on limited medication for functionality as my dopamine-producing cells deplete. But I accept that and I live for each day now because each day is worth a hundred years.
The most important thing to understand and to realize from day one if you are diagnosed with Parkinson's is that the symptoms are only going to get worse over time, so whatever you want to do or achieve do it today because tomorrow you might not be able to do it. And live each day as if tomorrow might never come and then you will know that you have lived your life to the full.
I sat in silence for the first time in my life and I looked up at the skylight above me and I could see the brightest star shining over me and I knew for that one single moment in time that I was invincible and free from all harm.
I looked up at the trees outside my bedroom window and they were gently moving and swaying with the gentle breeze, backward and forwards, backward and forwards because the wind was singing a happy song to them and making them dance and feel alive. And they seemed so happy in that very moment together and yet within a very short space of time they would eventually wither away and fall to the ground as the seasons change. But they didn't know that was going to happen to them but I did and I felt so sad for them because their lives would be so short. And I felt very very lucky because my lifespan was so much longer than the leaves on the tree and I would have more time to appreciate the gift I had been given of a long life regardless of whether I had Parkinson's disease or not. And my illness seemed so irrelevant in the ways of nature because I was still alive and still had a quality of life that the leaves on the tree outside my bedroom window would never ever have the chance to experience. But we never think like that because we always feel sorry for ourselves in our own selfish lives. Everything that happens is part of the natural world and was meant to be.
On a really bad day, Parkinson's can be a steep mountain to have to climb and it can be very difficult to see where you are going or how you are going to climb it, and on those days you have to dig very deep into yourself to get through them. But we are all totally different with different routes to climb but the problem is still the same. How am I going to get over this seemingly unclimbable mountain? And it's very difficult to stay positive on those particular days and to keep going. And I always have the same answer. Don't think about what you have to do just do it. Put your head down and start climbing that mountain and you'll get there. But whatever you do don't look back, keep looking up and you'll soon reach the summit.
I don't know what keeps me going, I really don't but something inside moves me on and tells me to take that next step and I carry on because I have to push myself through barriers each day and it's called pain. And I don't complain about it and I don't ask for prayers or sympathy because, in the end, it's my pain, my struggle so I like to do it privately and without any fuss. Sometimes you have to inspire yourself.
I have to take each day as it comes now and accept them for what they are good or bad and move on. I don't dwell on them or analyze them in any way because they are what they are. But that's Parkinson's for you constantly changing, mutating in so many different ways and you have to take it as it comes and adapt accordingly. It's a very slow decline in physicality so slow and subtle that you hardly know it's happening but it's constant and always there but it's happening nonetheless. And, as the symptoms change you have to adapt to them because you have no choice, and I do that as I have done for over forty-seven years and get on with my life as best I can. Parkinsonism has become a reality for me, something I cannot change in my foreseeable future. I don't question it in any way and Parkinson's is now part of me, which may sound unacceptable to some reading this but by accepting it into my life I have found peace of mind and understanding. And now I can live with the symptoms and the pain because I have accepted it as being normal. The laws of nature selected me for whatever reason to have to live with this terrible neurological degenerative condition. However, in saying that while I have suffered and struggled to come to terms with certain aspects of it, I have also gained from it as well because as one-half of my brain has deteriorated the creative side has become a dominant feature and I am so grateful for that. And, although the functionality side of my brain has changed in a radical way because now I have become artistically more creative, a lot less functional. As my ability to carry out functionality has declined my artistic creative ability has blossomed. So, there are silver linings in amongst the negativity the irony being that it has been something I have been searching for most of my life and I have found it in the most unlikely of places. I have a clarity of thought that I have never known or experienced before. A cup of water has transformed itself into a glass of wine. Bread and butter have become a salmon sandwich, and walking on the moon has become a distinct possibility in my literal creativity. I have become my own universe in which anything almost seems a possibility. I can travel to the far reaches of an unknown galaxy without moving a muscle. The world is my oyster, the sky is the limit and my Parkinson's life has become that much more bearable. I have found my inner strength from my outer weakness and have dismissed Parkinsonism with a simple swish of my hand, and now life is bearable and perfectly understandable. I have created a safe haven that has freed me from Parkinsonism and I feel reborn.
Sometimes I sit on the highest branch near the top of this big old tree and I look down on the world below and I wonder if there is anybody following me up this tree of knowledge called the Parkinson's tree. We all know something but we don't know everything. I stopped fighting this illness a long, long time ago and I decided to make it my friend which is why I have been able to climb so high. Every branch that I've been able to climb has taught me a lesson, but I still don't know everything so I am having to revisit some of the branches that I've already climbed in order to learn a little bit more. In fact, we are all trying to climb this tree of knowledge and find out how far we can go. And I am near the top of the tree and I still have a lot to learn. But the higher I climb the harder it gets, and so every now and again I sit down on the nearest branch and have a rest. And, while I am sitting there having a well-earned rest I look down on all these thousands of people with Parkinson's disease running around the base of the tree screaming their heads off and getting angry because they can't clamber onto the first branch. And that's because they think that they are trying to fight this illness when what they are really doing is fighting with themselves, but they can't see it. You have to learn the art of humility in order to be able to climb onto the first branch of the tree of knowledge.
I have to take each day as it comes now and accept them for what they are good or bad and move on. I don't dwell on them or analyze them in any way because they are what they are. But that's Parkinson's for you constantly changing, mutating in so many different ways and you have to take it as it comes and adapt accordingly. It's a very slow decline in physicality so slow and subtle that you hardly know it's happening but it's constant and always there but it's happening nonetheless. And, as the symptoms change you have to adapt to them because you have no choice, and I do that as I have done for over forty-seven years and get on with my life as best I can. Parkinsonism has become a reality for me, something I cannot change in my foreseeable future. I don't question it in any way and Parkinson's is now part of me, which may sound unacceptable to some reading this but by accepting it into my life I have found peace of mind and understanding. And now I can live with the symptoms and the pain because I have accepted it as being normal. The laws of nature selected me for whatever reason to have to live with this terrible neurological degenerative condition. However, in saying that while I have suffered and struggled to come to terms with certain aspects of it, I have also gained from it as well because as one-half of my brain has deteriorated the creative side has become a dominant feature and I am so grateful for that. And, although the functionality side of my brain has changed in a radical way because now I have become artistically more creative, a lot less functional. As my ability to carry out functionality has declined my artistic creative ability has blossomed. So, there are silver linings in amongst the negativity the irony being that it has been something I have been searching for most of my life and I have found it in the most unlikely of places. I have a clarity of thought that I have never known or experienced before. A cup of water has transformed itself into a glass of wine. Bread and butter have become a salmon sandwich, and walking on the moon has become a distinct possibility in my literal creativity. I have become my own universe in which anything almost seems a possibility. I can travel to the far reaches of an unknown galaxy without moving a muscle. The world is my oyster, the sky is the limit and my Parkinson's life has become that much more bearable. I have found my inner strength from my outer weakness and have dismissed Parkinsonism with a simple swish of my hand, and now life is bearable and perfectly understandable. I have created a safe haven that has freed me from Parkinsonism and I feel reborn.
Just because you sit on the floor and scream for help, it doesn't mean you should expect as given, but you should be grateful for it and acknowledge it.
When I look in the mirror I see a man that's a day older. But a day wiser nonetheless. And, the thing that I learned from yesterday was that tomorrow will come soon enough so make the most of what you have today and don't wish your life away. And enjoy each individual day on its own merits. Don't prejudge what might happen on any one particular day because you might end up being very disappointed. And welcome each new day with the hope that it might turn out to be a very good day and enjoy the day while it lasts. Because a day is not a lifetime and will soon pass, so while it's here celebrate the time you have and don't question it. It's what old Father time has promised you and has given you in good faith, and has told you not to waste any of it because that's all there is so make the most of what you have and don't question it. But we, sit and wait in the hope that something might happen, and we waste the precious time that we are given when we could be doing something useful and worthwhile. And when the day is over it is gone and may never come again. So treat each day as if it's your last and enjoy it until the very end. Because tomorrow will come soon enough and you can start all over again.
MAY 2023
Well, it's official. We are living together. After seeing my neurologist today I've decided to lease a room in my brain to an uninvited guest. I wouldn't say that it was somebody of my own choosing but there are some things in life that we have absolutely no control over and this is one of them. The day I finally realized and accepted the fact that I was going to have to live with Mister Parkinson for the rest of my life was the day that my life started to make any sense. Before that, I was going through the motions of what I thought life was supposed to be like with Parkinson's disease. All the neurologists and the textbooks and every possible point of view that you can imagine were telling me that if I was diagnosed with Parkinson's then it would be a slow physical and mental decline, time factor unknown. And, that's because everybody's symptoms are different and react in totally different ways but there was no doubt that if you were diagnosed with Parkinson's that there was never going to be an improvement and there was only going to be a decline which is a pretty grim assessment for anybody to take on board. And yet for some reason, it doesn't mean anything to me anymore because, in the early years of my diagnosis, it seemed like a far-off distant galaxy that I was never going to reach. But as I get older and after all these years you would have thought that I could see the end of my journey looming somewhere in the distance. And whilst I realize that I will eventually end up as a vegetable in a turnip patch, with very few dopamine cells, it's the furthest thought from my mind right now. Because now I am planning for my future and the things I am going to do with the rest of my life because this time is my time and is so precious to me. So that I am going to get as much pleasure and enjoyment out of it as I possibly can and not just feel sorry for myself because self-pity isn't me in any way or shape or form. The day that I start thinking like that is the day I decline and give up and that's the last thing on my mind right now. And, if only I could make it compulsory to think proactively like that I would, but unfortunately what we tend to do is narrow our horizons and stop thinking about what we can't do instead of thinking about the things that we are still able to do. For example, I have always enjoyed playing competitive sports but they have been taken away from me by Parkinson's one by one by one until the only one that I am able to play now to any reasonable level of competition is crown green bowls. But when I am unable to play that then I will look around for something else to do because I must never stop trying. And that is the point I am trying to make about living with Parkinson's. It's all about evolving with the illness and understanding the fact that you have to be able to make the best of what you have, and what you can still do especially in the early years of your journey because if you don't then it's gone. And that's because we stop thinking and we wait, and we hope something will be found to save us from this miserable existence of Parkinsonism. But, unfortunately, if you live in the real world, as I do, the reality isn't like that and you could be waiting forever. And while there's nothing wrong in being optimistic reality will tell you otherwise. So my life has evolved to fit the reality that I find myself in, and the reality is that I have to live life right now.
I wake up in the morning I take my medication and I write. And that's about it. I document my life. And I try to navigate a route through my Parkinson's day and try and make some sense of my diminishing life, and get something out of it because if I don't then it's gone and I will have nothing to show for it. And, so I keep writing and I keep working at the things I am still able to do as my body keeps losing those oh-so-precious dopamine cells. But I don't worry about that because I have more important things to do and think about like eating and breathing, thinking because you take all the basic functions for granted like your lungs working and being able to swallow food or smile but you soon come to realize that Mister Parkinson's doesn't just affect basic parts of your body because it spreads to the rest of your functionality until nothing comes automatic and everything has to be a manual thought and that's when Mister Parkinson starts to slowly but surely wear you down because it becomes tiring not just to your body but to your mind as well.
I have had Parkinson's for most of my natural-born life and it has restricted me in virtually everything I have wanted to do or achieve you would think that I would be so angry with it and resent it for what it has done to me and how I have suffered through all these years of having had it and yet it has taught me everything I know and it has been with like an unwanted friend who I can't get rid of and just have to put up with. And that's the problem with the way the majority of PWP find themselves looking at it. They can only the negative side of it with the day-to-day physical struggle and the anxiety and the sleepless nights and the pain and all the rest of the symptoms that you can possibly think of that you can have and that's the reality of it. It's not very nice, it's difficult and for some, it's just too much to have to cope with, and yet when you look beyond that as I have now after all these years it has become a normal way of life. And that is such a difficult thing to understand and accept. And for some people, they will never understand why anybody would think like that about the disease as a lot of people perceive it to be. But I don't see it as being like that because you reach a point, having lived with it for as long as I have that you just have to accept what you've got. And you have to learn to live with it and manage it because the reality of the situation is that it is never going to go away so the sooner you can come to terms with that the better. And it is when you reach that point that you realize the harsh truth about what you are going to have to do and learn to cope with it. It's not easy but there's no alternative and you just have to accept it for what it is. It's a disability but when you see beyond that you realize that it's a test of your character as well to see whether you can cope with the constantly changing symptoms and daily struggles. You have to realize that you are being challenged as to whether you can adapt and adjust to the lifestyle you are faced with. And I have managed to do that and that is the reason why I chronicle all my experiences now because I realize that it is like a roadmap for anybody who has to come to terms with this condition in the future. I didn't really think about how long I have had to live with it because it has just become a normal way of life to me but to most people, it is just one long struggle that they find difficult to cope with. And the reason for that is that they don't see it for what it is. It is and has become part of themselves so they either accept it or try to fight against it but in the end, there is only going to be one winner and it's not going to be them. The problem is that most people can't get away from the idea of seeing Parkinson's as an affliction or disease that needs to be purged from their body or eradicated or even cured ?. Well if only life was as simple as that, we'd throw even more of our hard-earned cash into it and before you know it Hey presto we would have a miracle vaccine or cure as is the case with Covid dare I say it but that is just isn't going to happen in my view because it's not a disease. I think it's part of everybody's genetic makeup, in other words, it's a part of you and always has been, so if you can accept that then you can start to understand what you must do to learn to live with it. And it's not easy but it can be done.
There is no easy way of learning to live a good life with Parkinson's, but there is an enthusiastic way in which you can find positivity in a lot of negativity, and that comes from the experience of knowing the things that you are still capable of doing and not pushing yourself too far. You have to find that balance otherwise you will find life difficult. And, it's literally one small step at a time because Parkinson's will change your life as your symptoms get worse over time. And, it's that time factor that is difficult to determine in any individual because some Parkinson's people deteriorate rapidly and with others, it's slow but whichever one it is always remember that you have today so you can enjoy today and think about tomorrow when tomorrow comes.
The one thing I can't hide from the world when I'm on a bowling green is the fact that I have Parkinson's disease because it's there for everyone to see. It can be frustrating at times, it can be very difficult to live with but the fact of the matter is that I have no choice, and so I have to try and live with it the best way I can. This is what I have had to do from a very early age when my life smashed into a brick wall at terminal velocity speed and I thought I wasn't going to recover. My life had disintegrated into little pieces and I was desperately trying to stick them together and make sense of it all. I can remember the night when I sat in a dark room and I sobbed my heart out because I felt forsaken, overlooked, and all alone with these dark thoughts in a very dark place. 1977. And, I had to make a big decision. Was I going to stay where I was? Or was I going to try and move forward and take the risk of losing my way? Well, even in the pitch dark if you look hard enough and you keep trying to move forward you will find a way because somehow I found a flame in the middle of the darkness and I found the light. I found inner strength through my outer weakness and I felt invincible because I had built a mental shield for myself that could withstand anything. But, you have to commit and trust in your own abilities because that is what my shield is built on, and long may it last because my strong foundations of inner strength and belief have been impervious.
We are always looking to escape our own outer reality when we should be trying to find our own inner selves. And I have realized that you can only truly be happy if you are comfortable and happy with yourself. And the three elements that you need are honesty, humility, and a sense of humour, and that takes self-awareness, self-analysis, and acceptance of your own personal frailties. And you have to be prepared to acknowledge that. You have to be prepared to spend time alone with your own shadow to be able to listen to your own thoughts instead of relying on others to think and make your decisions for you. And that is a gigantic leap in the dark for most people which they're not prepared to take, when in fact that is the way to self-enlightenment and understanding of yourself because you can only really find true happiness and love if you are happy and in love with yourself. I have found that deep thoughts lead to deep emotions which you have to release and let go of to be truly fulfilled.We are always looking to escape our own outer reality when we should be trying to find our own inner selves. And I have realized that you can only truly be happy if you are comfortable and happy with yourself. And the three elements that you need are honesty, humility, and a sense of humour, and that takes self-awareness, self-analysis, and acceptance of your own personal frailties. And you have to be prepared to acknowledge that. You have to be prepared to spend time alone with your own shadow to be able to listen to your own thoughts instead of relying on others to think and make your decisions for you. And that is a gigantic leap in the dark for most people which they're not prepared to take, when in fact that is the way to self-enlightenment and understanding of yourself because you can only really find true happiness and love if you are happy and in love with yourself. I have found that deep thoughts lead to deep emotions which you have to release and let go of to be truly fulfilled.
From the day we are born, until the day we die, we are learning from our own experiences, because a lifetime is a lesson well learned.
Every day is a lesson in life, a lesson in suffering, a lesson in enlightenment, a lesson in humility a lesson in gratitude for an uncomplicated and peaceful existence.
I can remember some of the wonderful bike rides I had with my friends Edmond, David, and Wade during the school holidays when we used to get up as early as we could on a hot summer morning and we'd get our moms to make us a packed lunch and off we'd jump on our bikes and we'd cycle down the country lanes near Hatherton Hall and go fishing on the Penkridge canal for the day. And it was wonderful because it would be early morning with hardly anybody around except maybe the postman delivering his letters or the milkman on his milk round, and we might see the early morning paper lads collecting the morning papers, magazines, and comics from Loyd's the Newsagents from the top of Saint John's Road. We would tie our fishing rods to the crossbars of our bikes and off we'd cycle towards Penkridge Canal. The amazing thing about cycling down the country lanes from Cannock to Penkridge was that the lanes were fairly flat and it was miles of open countryside with very little traffic on the road to bother us or get in the way so it was always a nice leisurely bike ride. But the great thing about it was we'd talk about all sorts of things as we were riding along. And we'd laugh or we'd share a joke or maybe sing the latest tune by the Beatles “the sun is up the sky is blue it’s beautiful and so are you dear Prudence won’t you come out to play” but we were always happy in each other's company. And, for those two or three years we were inseparable during the school holidays. We would play board games together, and go to the pictures together, we used to catch the bus on Walsall Road and go to Walsall Gala baths and go swimming together. We'd have overnight stays at each other's house, we even converted an old outhouse building at the bottom of one of our gardens, cleaned it up, and turned it into an observatory for stargazing. And those sorts of close friendships are priceless and never to be forgotten but we do because they seem unimportant at the time and they slip to the back of our minds and are forgotten about. But fortunately, I remembered them because they were very important to me because they were a time when I was healthy and I could do the things I wanted to do. And these were the days of our lives when we were so young and carefree. We would spend the day in Cannock Park for example and we'd play on the swings, or have a little game of football or play leapfrog. Then on the way home from Cannock Park we would stop and have a look to see what film is on this week at the Danilo, or maybe buy an icecream with our last few pennies from Rosa's the icecream cafe, or the last cream cake from Taylor's bakery before it closed for the day. But whatever we were doing or wherever we might be they were the best days of our lives. I can remember when we bought some Airfix model battleships, and after we had built them we would take them up to Cannock Park and try to sail them in the little stream at the very bottom by the sports pitches. Or we would buy some balsa wood model planes from Harry Hughes Toy shop on Wolverhampton Road near Cannock Town center and we'd take them over the back of Cannock park where the open fields are and we'd fly them there. And if you were very unlucky and the model plane flew too high you would have to try and retrieve it from somebody's back garden. Cannock Park was great for us because it offered us a big play area with great sports facilities, water fountains, and clean toilets and we had everything we needed to play in a safe environment. And I can remember all of it because these are the days of our lives when childhood and friendship should never be undervalued or forgotten.
On the really bad days, I don't know what keeps me going, I really don't but something inside moves me on and tells me to take that next step and I carry on because I have to push myself through barriers each day and it's called pain. And I don't complain about it and I don't ask for prayers or sympathy because, in the end, it's my pain, my struggle so I like to do it privately and without any fuss. Sometimes you have to inspire yourself.
I lead a very simple life and I avoid complications because complications can cause me stress, anxiety, and panic. My mind and my body had been hurtling along at warp speed and everything around me seemed blurred and out of focus. And the adrenaline in my body was like nuclear fuel. I was traveling so fast that I couldn't slow down and I was starting to worry about everything and needed to get off the high-speed train of life because it was making me ill, and I would suffer burnout and unravel. And that's exactly what happened. I became a casualty of modern life. And so I had to drastically change my lifestyle in order to survive and now I walk instead of running and I contemplate instead of watching television. It's drastic but it works for me. Silence can be spiritually rewarding and can rejuvenate the mind, heal your soul and reconnect you to what's really important, and what's really important is making sure that you learn to take care of yourself.
APRIL 2023
In order to live my life in a manner that is realistic and sustainable l’ve had to simplify and concentrate my focus on the important things and not the trivialities. Silence is a powerful medium if you are able to understand and use its healing qualities.
Sometimes you have to suffer to understand and appreciate what's really important in life. And when you have suffered as much as I have then you realize that you have to help others to understand as well. We have always looked at Parkinson's as being a terrible thing to have to live with, which it is in some respects, but it also teaches you a great many things as well. And there are very few people who will accept and understand that because all they can see are the day-to-day effects that it has on people's lives, but there's more to it than that because when you get beyond that you realize that the people who are able to live with it for any length of time are very special people and accept it for what it is. Parkinson's is a lesson in life because if you are able to live with such a terribly debilitating illness as this then you must have a lot of strength physically and mentally. Living with Parkinson's for any length of time is like climbing Mount Everest, and that's why there are very few who have been able to do it but I've been very, very lucky and still climbing.
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