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S ix years ago on Wednesday December 8, 1993, my second life began to resolve itself with my pallidtomy, a process that continued with my DBS a year later on Wednesday December 14, 1994. I did not realize at the time that my medical team, Drs. Andres Lozano, Tony Lang & Ron Tasker and Mrs. Jan Duff, R.N., had exercised a transforming influence on my life. I did not know, and still do not, what a profound change they wrought. I have a new vocation - easing the burden of having Parkinson's - which has been tested in the crucible of daily life at home and at the Parkinson Foundation of Canada and not found wanting, except in its ambition, but "...Ah, but a man's reach should exceed his grasp, Or what's a heaven for?..." I want to thank everyone who, knowingly or unknowingly, has supported my efforts. I have a favour to ask of the list members. For the past eleven weeks, I have posted a chapter from my book, My Second Life: a memoir of my experience with Parkinson's Disease. It is finished now. I would appreciate as many of you as are able to writing a critique of the book, as short or long as you wish. I preparing your critique, you might like to bear the following questions in mind: • As a reader does the book hold your interest? Do you want to keep turning the page? If there are places where you find your interest flagging, please indicate where and why. • Are the any medical concepts conveyed clearly and unambiguously? • In general, are you enthusiastic, warm, lukewarm or cool about the book? I must ask you to be utterly honest in your opinions. Do not weaken a criticism out of a misplaced regard for my feelings. That renders opinions useless. In order not to burden list members with critiques, please send them off-list to: [log in to unmask] Thank you for your support Bill (56/37/35) Chapter 11 An End and a Beginning The effect of the second operation, combined with the first, was truly dramatic and miraculous for me. People in our neighbourhood whom I didn't know but who had observed me, stopped me on the street and said "What has happened to you? There is such a tremendous change in you!" I was and am, to borrow a phrase from C. S. Lewis, "surprised by joy", by the joy of freedom, freedom to do what I want to do, within reasonable limits. The operations were not a cure for my Parkinson's. That is not possible yet. But the worst of my symptoms are under control. My Parkinsonian mask is gone, my arms swing naturally when I walk and my walking is vastly improved. On the minus side, my speech is a bit worse, my handwriting is hopeless and I tire more easily. When I am overtired, my speech becomes unintelligible, mobility deteriorates and co-ordination can be a real problem. That's the challenge: to know when to stop, and then to stop. I still take 4 Sinemet CRs per day, and I try to take them on time. Before my first operation I was taking 14 of those blessed pills each day, one every two and half hours, and even then I could never tell when I would become completely immobilized. I no longer take a cane with me when I leave the house. Esther is relieved. I used to walk with my cane outstretched behind me. After catching a young woman and later a small child between the legs, Esther would not take her eyes off me while we walked. The cane was more like a gelding instrument, I am now a free man ... well, not really free because I now have to have my little portable stimulator hooked up all my waking hours. It is no larger than a Walkman, but it consumes one 9-volt Duracell battery every day. I am able to live a normal life. I look like a normal person. I am no longer the frightening looking person I introduced at the beginning of the book whose violent shaking alarmed and repelled people. I no longer feel or am perceived to be alienated from society. When I get up in the morning I take our very lively Airedale terrier on a five kilometre walk. I have been re-certified to drive a car. I go to meetings, go out to lunch. We travel. For the first summer after the operation, at Blue Sea Lake I prepared for water sports by buying a waterproof bag to safeguard the pacemaker when I was sailing or canoeing. It turned out that the main danger was not getting it wet, but having it bang around in the sailboat when coming about or gybing. I tried, somewhat apprehensively going out without the pacemaker. To my surprise and delight, I found that, as long as my pills have been taken on time, doing without a pacemaker is not a problem. My movements and agility are not quite as good as with the pacemaker, but are more than adequate. On the matter of golf, while I have only played half a dozen games in my life, I can now drive a ball 75 - 100 yards; the difference is that the ball often lands in the middle of the fairway instead of everywhere but. Looking back over the operations, I realise that despite the very legitimate apprehension about a bilateral pallidotomy, it appears that the mini-pallidotomy and sub-thalamotomy that had to be performed in the second operation to insert the electrodes had the most beneficial effect and that the electronic stimulator is, most of the time, the icing on the cake. I have gone for most of a morning without medication and just the stimulator. With the stimulator alone, I am not as well off as with both, but I can function well enough to take public transit to the hospital for testing. The physical and practical improvements are dramatic. Apart from the sheer pleasure of living close to a normal life, there is the relief of being able to help Esther. Because of her condition, I had to be mobile if we were to be able to live our lives together. This is the great practical benefit. I am able to look after the household. Not only that, we can travel together. I can get her on a train or plane. I believe in miracles. At Easter, 1995, I wrote a poem, Miracles, to try to set down my feelings about my operations. It is a sort of postscript to Lazarus: M I R A C L E S A child healed because a prayer has been said Or a sacrifice offered to a household god Or because a different doctor is consulted Is not a miracle. A child could just as well die from these things. An apparition can be the result of an altered state of mind Brought about by pain or hunger or fatigue or mortification. Or by the magic mushroom or peyote-mescaline. Not a miracle, just hallucination Self-induced, deliberate escape An auto-stigmatizing statue or one that cries The Lady's tears of pain Is often a calculated attempt To deceive the faithful or ones' self. Honest piety, judiciously applied to human endeavour Can produce things that pass human understanding; But these are not miracles. For they require a special talent Like the shaman in The Cunning Man. Miracles involve perceptions of reality Different from the everyday interpretation Of what makes life tick on. A miracle-worker is not An ordinary human. They are well-schooled in their art-form They aren't ordinary whiz kids. They dazzle with their insights Us ordinary folk Who aren't in their league. Super-tuned and extra-focussed ears and eyes Interpreting reality differently Neurons and receptors arythmically conversing. Discovering why there is disorder and chaos Is the miracle. For they have been there always. Waiting to be discovered by human senses They elude the common mind The idler's tongue They are not invented They are the apogee of Creation. When understood in their fullness Miracles explain the mysteries Of the world in human terms To human beings. For that is the special skill of the modern scientist: finely honed perceptions combined with lateral thinking. These skills are fired in the crucible of technology, for these finer perceptions would not be possible without the benefits of science. This definition of miracles also frees me from the doctrinaire position that if it did not happen in the Bible, it is not part of God's revelation. It permits - no, insists - that the insights of Einstein and Freud be part of God's world. I believe in miracles because I have had two miracles worked on me. The two operations I had were tremendously successful and I get great satisfaction from writing and speaking about them. But I know that these risky medical procedures are only suitable for a small proportion of those who suffer from Parkinson's, or other chronic neurological conditions. The neurosurgical/medical team chose me to be their guinea pig, in part because I was comparatively young, and I was, except for Parkinson's (and that is quite a big "except from") I was in quite good psychological and physical health, and had no other chronic medical conditions which could adversely affect the outcome. Not long after my second operation, I saw the results of a another bilateral pallidotomy which had been done in two separate procedures a year apart. The patient, a man in his sixties was a diabetic. After the second procedure, he was left with severe gait, cognitive and balance problems. The tragic experience of this patient is compounded by the agony his family must endure. This brings home a truth that Esther always emphasises when talking to patients and their spouses. "The patient makes the decision and has the procedure; the family lives with the consequence." Another factor that restricts pallidotomies being used widely for the treatment of Parkinson's is that these operations require such a high level of medical and technical skill that it may be unrealistic to propose that all those thousands of patients in Canada alone who might benefit from the operations should have them. However, in the four and a half years since the second operation my medication costs have been reduced by over $50,000 so there could be an economic argument for the operation. There is a real sense in which the effects of these operations remains a mystery. Medical science knows how lesions affect the brain and how chronic stimulation affects movement, but as the philosopher John Searle observed, As far as we know the relevant processes take place at the micro levels of synapses, neurons and cell assemblies. All our conscious life is caused by these lower level processes, but we have only the foggiest idea of how it all works. We know how the motor system works, but we do not know how the neurobiological processes in the brain cause consciousness. The answer to the question of consciousness is tied up with the old philosophical problem of dualism: the placing of consciousness and other mental phenomena outside the ordinary world and thus outside the scope of natural science. Opponents of this view argue that dualism must be abandoned and we should start with the assumption that consciousness is an ordinary biological phenomena like digestion or growth. The operations that were performed on me are only one approach to treating of Parkinson's. In effect, the pallidotomies with deep brain stimulation are an acknowledgement that a part of the nervous system is irrevocably broken. Another treatment approach is along the line of dopamine replacement. My only experience of this are the medications Pergolide and Sinemet CR. Now, a whole new generation of dopamine agonists is being developed, and there is great pressure to make them available to patients before they have been thoroughly tested. One of these drugs has had to be removed from the market because of fatal adverse reactions in some patients. Foetal transplants have long been the dream of neurologists and neurosurgeons. This treatment is an extension of dopamine replacement therapy. However, it raises very large practical and ethical questions. In order to treat each side of a patient's brain, six or eight voluntarily aborted six-to eight week old foetuses are needed. If the this treatment were to become widely used, the number of foetuses required would give the most ardent free-choicer pause. In addition, testing the procedure is very difficult. Is it proper to undertake a double blind study in which neither the doctors nor the patients know which patient has received the foetal cells, when the results from those getting the real thing will only become evident as much as eighteen months after the operation?. Much of my time has been spent working with the administration and work of the Parkinson's Foundation, as well as the peer support programme. Among the projects I've been involved in are the growth of the Superwalk, the initiation and development of the peer support programmes, as well as sitting on the board and on various committees. I have also attended international Parkinson's conferences. In effect I have become a professional Parkinsonian. My neurosurgical experience has been the great adventure of my life. Imagine the thrill of having your brain operated on twice, each time fully awake. And the predicted results happened: I have been born again. Not in the sense of religion, but in being free to move and act. My life is ahead of me. People have said that I am an inspiration to them as well as saying that I am a hero. I find these statements profoundly embarrassing, because I have done nothing that is heroic or inspirational. I had no choice. Without the two operations, I would be spending the rest of my life bedridden in an institution. I know that in our family I am the lucky one. Esther's condition has progressed considerably (in medical terminology) in the seven years since her diagnosis. Her gait and balance have deteriorated as a result of two factors not directly related to Multiple Sclerosis. In the summer of 1995 she broke her right hip, and there has been a development of chronic pain in her left shoulder and neck which radiates to her feet and hands. This pain is so severe as to be debilitating and has rendered her a semi-invalid. A whole arsenal of drug therapy has been tried with only limited success. In the first place, the so-called pain-killers don't kill pain, they only take the edge off. And they have adverse side effects ranging from weight-gain to worsening co-ordination. There is the possibility that neuro-surgery similar to Deep Brain Stimulation could alleviate the pain, although at present the success rate for this treatment is only about fifty percent. One morning in May, 1999, our son Howie, who was now twenty-eight, phoned us from Vancouver where he was studying, to say that his ulcerative colitis was excruciatingly painful. We could feel the pain the sound of his voice. He had been suffering from this condition for several years - it was the consequence of drinking bad water on a canoe trip. Ulcerative colitis is a chronic disease of the bowel characterized by sores or ulcers, on the inner surface of the large intestine which are extremely painful. Digestion becomes difficult and there is a lack of control over bowel movements. These features combined with the medication he was taking having become toxic had led Howie to becoming less gregarious and somewhat reclusive. Howie told us that he had an appointment with his gastroenterologist the next afternoon. We urged him not to wait but to go to Emergency at once. He did, and that afternoon he was in St. Paul's Hospital in Vancouver with emergency surgery, an ileostomy, scheduled for the next evening. In the end four feet - about one and a quarter metres of Howie's large intestine, the whole thing would be removed. I got the first available flight to Vancouver to be with Howie. As I walked into his hospital at noon the day after his operation he was asleep. I said, "Howie, it's Dad. I'm here." He woke up, surprised to see me. Tears welled up in my eyes as we hugged each other. I felt very vulnerable. Over the next week as we talked, I was thrilled by Howie's positive attitude. One statement of his hit home. "I'm regaining control of my life!" The true dread of everyone who has a chronic disease is the lack of control they have over their life. Where once our lives had been run by the diseases we had, first I and then Howie had had leading edge technology surgery. We have been doubly blessed with a second chance at life. What we make of it will determine if we are worthy. With chronic disease you have to be angry enough with the disease that you say, "I will not permit this condition to run my life any more" But you must not only have been diagnosed with a chronic illness, you must experience it yourself for a period of time - for everyone's experience is different. As Nietzsche wrote, He who seeth the abyss, but with the eagle's eye - he who with the eagle's talons graspeth the abyss: he hath courage You must go to the edge of the abyss, look in and decide that this is not the future you want. In T. S. Eliot's play Murder in the Cathedral, the chorus says, We are afraid in a fear which we cannot know, which we cannot face which none understands, And our hearts are torn from us, our brains unskinned like the layers of an onion, ourselves are lost in a final fear which none understands. and that surely is the point. No one who has seen the bottom of the abyss wants to be there. Hope must never be abandoned.