PLANET PARKINSON'S

HOPE There is no point in waiting for something that may never be found, and that is what you have to accept and what you have to come to terms with on day one you find you have Parkinson's because you have to ground yourself in the world of reality. The next thing you need to understand is that there are certain surgical procedures that might help but they will never cure what you have. And then it's a question of spiritualism and what you want to believe because attitude and belief will carry you a long way. And, that's because at some point you will get anxious you might even get desperate and try anything that might help you cope with this terrible debilitating condition but in the end, you have to accept your disability and try and get on with your disabled life the best way you can. You have to learn to live with it because no expert has all the answers to your life or your disability. And, some people come to terms with it and some will never accept the fact that they have it but those brain cells are slowly dying and there's nothing that can stop that happening. It's a very difficult and upsetting thought to have to come to terms with, but those are the facts. But that doesn't mean to say that there is no hope. There is always hope. Hope is the most precious thing we have. Hope can give you strength of purpose, strength of mind and provide you with a way forward. It means that there is always a chance that something might change. It's such a tiny little word but it has such a big meaning, a big impact. Hope is probably the most important word that has ever been invented, that you will ever hear because hope is the one word that has helped all of us to get to where we are now, and without it, we would be nothing at all because we would have given up. But we didn't did we? THE SECRET LIFE OF MISTER CABBAGE As much as my long journey has been a downward spiral in health, it has also been a journey of enlightenment about myself and what I am still capable of doing. It would have been so easy for me to be miserable and feel sorry for myself and wallow in my own self-pity, but what would have been the point? I decided instead to be proactive and give my disabled life a chance. And although you may think this sounds crazy I wouldn't have changed any of it because I wouldn't have learned a thing. Living with Parkinson's all these years has taught me more about myself than you could imagine and I am so grateful for that. I was someone who saw things through a black-and-white lens to see it all in brilliant color. My perspective changed and the little things became big things. A cup of tea became a glass of champagne, a piece of toast became a salmon sandwich with cucumber, and all of a sudden everything came into focus and I understood. There are a lot of things you can alter in your life but as far as I am concerned Parkinson's was my destiny. I could have been the first man to have stepped foot on the moon's surface and still had Parkinson's. So, nearly half a century later struggling with myself in trying to understand what I was suffering from has made me come out of my dark tunnel of panic and anxiety and worry about the future and just seeing it for what it really is. It's a disabled life. If I'd listened to all the advice I was being given I would almost certainly be a vegetable by now and I would have turned into Mister Cabbage. My brain would have fallen asleep. The trouble is we think that knowledge is power and will help us on our Parkinson's journey in the hope that a cure will eventually be found. A cure for what? And that's the biggest problem with the majority of people who find they have it. They don't see it for what it is. That's why most people live in the hope that something will come along and make everything right again. Well, I stopped thinking like that a long time ago and just accepted it as being part of me that I would have to live with for the rest of my life. And I don't overdose on reading all the latest medical research and all that rubbish because I know that deep down it will never happen. In fact, my knowledge of what Parkinson's is all about is very limited, and all the drug therapies that go with it because I've never really wanted to go into the details because to me that's not important. What's important is learning how to live with it and not fight against it. I am a very single-minded person and follow my own path and that's how I've always done it. And, if it treads on a few toes then so be it because I am not going to change the direction now because I am happy with the direction it's going. THE MEANING OF MY LIFE I realize now that I see my world through different eyes. My perspective of life through my disability has made me realize how vitally important it is to enjoy the day and not complain about the pain that I suffer because the pain that I suffer is part of my day, and as unpleasant as it might seem has made me realize and appreciate the life that I had without pain when maybe I didn't appreciate it enough. And you only realize that when you can't do the things that you could do without thought. Pain has changed me a great deal because it has made me think about myself and why I am here and what I must do. And the most important thing in the world to me right now is to enjoy the moment while I am still here and still able to feel the pain that I still feel because although it may not be a pleasant thing to have to live with, it's better than nothing at all. We all have to learn to suffer in order to appreciate the things that we still have and to be able to understand the real meaning of life because without that we have nothing at all. And I don't think like that and never will, because I am eternally grateful for the life that I have been given and will accept the pain and make the most of it. See the sun in the sky Feel the wind on my face Taste the fruit from the trees I am the luckiest man alive I can feel the power of the wind on my face and when I look up into the blue sky I can see and feel the solar energy that radiates from the sun. I can smell the flowers in the garden, taste the fruit from the trees and turn water into wine. We can grow food from the land with a little help from the sun and the rain. It's a relationship that has to work together otherwise it doesn't work at all and we get an imbalance and extremes of nature like powerful storms flooding and high temperatures. It's a balance that can tip one way or another but it's something that we have to try and get right otherwise there's chaos. My life has changed drastically in the last couple of years because I've stopped being one of the boys with the loudest voice and the cynical mind, and I have found myself. I was so anonymous before because I followed fashion and did everything I was supposed to do within the realms of conformity but now I can see with my all-seeing eye because we are slowly but surely killing ourselves. We have lost respect for our natural surroundings and that's a tragedy waiting to unfold. And you may not want to read what I am saying and pretend it's not true but we will reap what we sow and destroy the planet that we live on. And it may not be today but it will happen because we have polluted our own world and created technology that can kill us all and damage the earth beyond repair. And we think we know it all when in fact we know very little. And it takes a very simple man like me to say those words in the knowledge that very few people will be prepared to acknowledge what I've just said. Because they don't like to think about things like that. it's a cold stark reality. And they slip back into their plastic world of me, me, me and they watch the latest films on the pay-per-view television and eat junk food out of plastic containers. And they throw them in the bin which gets dumped in the sea and creates an imbalance in the ecosystem of our planet which becomes difficult to comprehend because we are far too distracted by the billion-dollar making Barbie movie. And that's a tragedy in itself because you couldn't find a more artificial and plastic image than a Barbie doll. But that's the trivial fantasy world we prefer to live in. But I for one will not be part of it in any way, shape, or form. CELEBRATION I have always been a proud person and for the most part, have been able to look after myself but I am slowly but surely coming to realize that there will come a time in the not-too-distant future when I will be incapable of doing any of those things and will have to rely on other people to do them for me. And it's a sobering thought considering I have only just turned sixty-five years of age. But sometimes you have to swallow your pride and accept the fact that you might not be able to do the things that you were once able to do. But my realization and acceptance of the fact have been a very difficult concept to come to terms with. I have spent most of my life refusing help because I have always been a very single-minded person. But Parkinson's takes no prisoners only accepts them and that's a fact. And I don't say that in a bitter sense because I've lived with this condition and documented my journey for quite some time. But realization and acceptance of what lies ahead for anybody, especially as we get older are never an easy thing to accept or come to terms with but you have to because the big wheel of life keeps turning and everything must pass and change but it's the realization of the fact which is the hardest thing to understand. I sat in the back garden yesterday and my clarity of thought was so sharp because I looked at the back of my hands and I suddenly realized how old I was. And the time that I have been alive suddenly has passed so quickly because it hardly seems like any time at all. And that's because I am aware of my mortality now and how important it is to not complain but to appreciate what I have left. Time is never guaranteed and you have to accept what you are given and be grateful for I understand that now and just wished I had thought about it earlier but I can't change it so I am going to celebrate it because every day should be a celebration of life and not just any other day. INDEPENDENCE DAY Sometimes you have to make brave decisions in life and I took one today when I voluntarily handed in my driving license not because I had to but because I knew it was the right thing to do. And in doing so I lost my independence but I gained a great deal of respect by being honest about my ability to drive. I passed my driving test with Parkinson's so the vehicle licensing centre was well aware of my disability, so there was no problem there. In fact, I've had clean driving for most of my life, except for one speeding ticket for driving at 35mph in a thirty zone, but we all do that every now and again. So there was no external reason. And it took me a great deal of soul searching, but after giving it a lot of thought came to the conclusion that I wasn't as sharp behind the steering wheel as I used to be partly because of my age, but also because of the fact that I had been living with a degenerative brain condition for 47 years and I wasn't getting any better. That doesn't mean to say that my health had seriously dipped in any way because I am feeling very well, but the deterioration isn't physical, it's the mental deterioration that I have been experiencing in my judgment and my reaction times but most important of all was the confusion that I have become aware of recently which makes me feel anxious and slows down my reaction times, which ultimately makes me unfit to carry on driving. It was very difficult for me to take but I felt I had made the right decision. THE HERMIT I have one philosophy and one philosophy only these days. I wake up each morning and say to myself Well Robert Keene, look after Rob and you'll be absolutely fine. And that's the truth, but the trouble is that I don't. The reality of the situation is that it's my long-suffering wife Jane and I only use the term long-suffering because anybody who is willing to put up with my overbearing personality, my mood swings, my temper tantrums my complete loudness and sheer snobbishness, and complete lack of understanding of all life around me for over 25 years and still give me the love that I don't deserve then it's her because anybody with any gumption or self-preservation would have left a long time ago and wrote the best selling book on how she lived with a monster for over forty-five years. But the monster isn't me, the monster is this illness that I have had to put up with for most of my natural-born life now. And I really don't want to even give a name anymore or even talk about it anymore because it has wrecked so many lives and so many relationships. And that is the biggest problem these days with any long-term or degenerative brain condition. They can treat the body but they can never treat the mind however many shrinks they employ because it's the battle with your own mind that is the biggest hurdle that you have to overcome and you have to be willing to sacrifice to get it. And I have sacrificed a lot over the years to be where I am now, and what I mean by that is an emotional sacrifice because without that emotional sacrifice, I wouldn't be where I am now and I know that. I have had to turn myself into a rabid dog who snarls and snaps at everybody and everything around me just literally to survive. I have turned myself into something that I am really not. But that is the price I have to pay and am willing to do from now on because deep down I just want to survive at any cost. I have made a deal with the devil to stay alive and that may seem a very strange way to describe my life now because anybody who had to deal with my physical and mental problems day after day after day would have ended it before now, but not me. I'm stupid enough to go and ask for more. And it's that mindset that you have to be in to put up with all the problems that mount up as your condition gets worse down that long trail of suffering. But it is wise, especially in the early years, to put that to the back of your mind and live a normal life as possible because if you knew what was to come you would be digging a hole in your back garden right now. And of course, that's the worst-case scenario because I have been having good days as well but the reason I think the way I do is so that I won't be disappointed about anything that happens in the future, such as not finding a cure or a wonder drug to control the condition that 'I'm suffering from. In that way I try to live as normal a life as possible but what is normal these days? Jane always refers to me these days as living a hermit-like existence because I don't go anywhere or do anything and she often wonders why I don't get depressed about my condition considering how much time I spend alone and how much I write about it. But what's the point in getting down on yourself because I don't the reason for that is that I have condensed my life into what I think I can handle which has meant taking as much stress out of my life as possible in normal day-to-day life. I mean let's be honest, what could be more stressful than having to wear a mask on your face each and every time you go out of your own house? So I don't go out as much as I used to unless I absolutely have to and I minimize the number of stressful situations that I might find myself in. Well if that means living a hermit-like existence so that I can live the lifestyle that I feel comfortable in then that is what I'm going to do. Onwards and upwards, or in my case, sideways. WELCOME TO DREAMLAND. I quite often sit in my armchair and look out of the window and wonder what is going on out there. Because it's almost as if the majority of people are sitting around waiting for something to happen to make everything right again. Well, I'm afraid you might be waiting a long time because I've been waiting nearly half a century and nothing has happened yet. And I keep hearing words like nearly and almost and, and, AND! And what! And then we all get disappointed because nothing happens. Well, it crossed my mind once or twice that maybe we are just looking in the wrong direction in trying to put all our faith in technology and scientific advancement but is that really the solution? Faith is a very powerful thing and if you believe that something will make you feel much better then you are three 'quarter's of the way to solving the problem. So, you just have to convince them that it will work but, what if it doesn't? As far as I am concerned I have to narrow my horizons because I cannot afford to look at the bigger picture and the greater good. I have to look after myself and what I need now. It may sound like a very selfish attitude but I cannot afford to rely on other people I have to have faith in myself because in the end whatever I have to go through I will have to deal with alone, be it mental or physical. NEW GOLD DREAM In 1982 I was floating around on the breeze, lost in the music of my own thoughts. I was on a tranquilizer trip of a lifetime, and with a little bit of alcohol in the mix I was so happy I felt like crying. I was wandering around on a busy Saturday afternoon in the Mander Shopping Centre in Wolverhampton, lost in my own thoughts, and the only person who knew I was there was me. I was screaming inside and nobody could hear me nobody knew my fears for the future. I was living with a nightmare and the only person who knew that was me. I had Parkinson's since l was nineteen and I could hardly grow any facial hair yet. I had no future and nowhere to run, I was searching for answers looking for clues. And my only thought was the get-out clause and I couldn't think any further than that. I was lost in the music I was listening to, searching for answers in the lyrics but I couldn't find any. Except one. And that one album gave me the answer, showed me the light and I followed the music back into sanity, back into some kind of normality. Simple Minds New Gold Dream. THE SINGER AND THE SONG I used to love being able to sing when I was a young boy growing up in the early 1960s in fact I had a beautiful voice and I could sing pitch perfectly like a songbird when I was at junior school and was even offered a place at choir school to train to be a chorister. But if you asked me to sing a song now I wouldn't be able to sing more than three notes in tune or sing loud enough. And that's because Parkinson's took that away from me at a very early age. But it was also because I stopped using my vocal cords and practicing with the muscles in my throat needed to produce the sound in order to be able to sing the song. And then you suddenly realize that in order to be able to sing a song you have to be able to sing the melody and remember the words, which you need to be able to read out of the songbook and hold at the same time. And all of a sudden singing a simple song becomes complicated because you have to be able to do so many different things at the same time in order to be able to sing, but more importantly, you have to be able to remember the motor skills needed and that's takes repetition and practice. Parkinson's is all about practice and repetition. If you don't practice you won't remember and if you don't remember you will forget so keep practicing.