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