Returning To Stillness
A brief story of my recovery from Parkinson’s disease
(the full story is told in “Shaky Past” available as an eBook from Amazon)
Forward
I have had an interesting, sometimes adventurous life. It didn’t always seem to be either interesting or adventurous; sometimes I wanted to step off the world and find peace for a while. Sometimes I was able to really celebrate what I had achieved.
In reflecting on my life, two experiences stand out as profoundly life changing. Of course, every moment has played a role in my development, but these two experiences, more than any other events, have moulded me as a person, and guided me into my current career and lifestyle.
In 1980, my elder son, Damian, developed leukaemia. He battled heroically for three years and nine months, then died a whole and loving person, leaving a legacy of changed people. His story is told in “Measure of Love”, yet to be published. His memorial is Very Special Kids, a wonderful family support organisation established through the inspiration of both Damian and Lee Good, his friend.
During 1995, I was diagnosed with Parkinson’s disease. My recovery took over three years and cost me almost everything I had. Throughout those years, Damian remained an inspiration for me, as he is for so many others.
This is the story of my recovery, told from my perspective, from diaries and notes kept at the time, plus my memories.
Many helped me through this adventure and I love you all. To those who choose to read what I have written, I hope the story helps you on your journey.
I encourage you to find your own adventure, and celebrate with me.
John Coleman
May, 2002
The shrilling of the telephone woke me on Sunday August 6th, 1995. I felt tired and groggy. I had slept restlessly after a difficult and tiring day, going to bed aching and exhausted, but tossing and turning during the night, unable to get comfortable. I had drifted into a dream-filled sleep around dawn and did not want to wake up to answer the telephone.
The sound of the telephone was insistent, so I reached out my right arm, feeling the pain in my shoulder, and grasped the handset. My brain said “John Coleman”, but what came out of my mouth was a horrifying jumble of sounds. I tried again. More incoherent gibberish.
I could hear Lizzy, my young sister, on the other end of the phone line saying, “John! Is that you? Are you alright? What’s wrong? Are you alright?”
I managed to stammer out that no, I wasn’t alright and no, I didn’t know what was wrong, then hung up and rolled out of bed. I could walk, but only just. I wobbled badly and needed to support myself to stay upright. My body ached all over, my head felt funny and, as I mumbled to myself, I realised that I just could not speak coherently.
What was wrong? Had I suffered a stroke? Was it some dreadful virus that I had contacted at the hospital where I worked?
I sat down, exhausted again after so little effort, and tried to think clearly. My head felt clouded and woolly. However, I realised that these symptoms had been developing for some time; I just hadn’t taken the time to do anything about it. Over the last few years, I had developed aches in many joints, my sleep pattern had become very inconsistent, I often found it difficult to concentrate, and had developed a mild stammer. Many symptoms that had plagued me for over thirty years had been exacerbated lately, but I was working hard, studying, and felt that I didn’t have time for rest. “Just a couple more years”, I thought, “Then I’ll rest.” But my body had been crying out for help, and I wouldn’t pay attention. At last it had given up. “Look at me, I’m hurting!” it said.
I sat in my lounge, alone and frightened. I hurt and shook, I couldn’t speak and could hardly walk. Tomorrow, I had to work a minimum of ten hours in busy operating theatres, was due to move house in a week and had no money to take time off. What was I to do?
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Moving to my new home in August 1995 was a nightmare. I was very ill and incredibly tired. Sean, my sister Lizzy, and some friends helped me clean the house in Reservoir and I moved into a large house in Blackburn, a lovely, treed suburb east of Melbourne, with a friend, Joanne. The move reduced my expenses, of course, by sharing accommodation, and brought me closer to my new college. Access to Epworth was almost as easy as from Reservoir, and the environment was certainly more pleasant.
But I was too tired to enjoy the change. My body ached as if I had been rolled down a hill in a barrel. I shook all the time, sweated at night, slept very little and could hardly communicate because of my speech problem. The pain in my neck and shoulders had been with me to some degree since I was twenty, but now escalated to almost unbearable levels. The move had been difficult, so I thought that settling into my new home would bring relief from these symptoms.
On advice from Julie, an osteopath and craniosacral therapist, I had obtained a CT scan of my skull on August 9th. I had consulted Julie about persistent neck and shoulder pain. During her examination, she noted persistent tremor in three limbs, plus my almost incoherent speech, and refused to treat me until I had a scan. Even though I was able to have the scan at Epworth the next day, I was too busy with work, study and my move to go back to Julie and show her the results. I just tucked the films away for another time.
The house was a large, two-bedroom, brick dwelling with a big rumpus room added at the back. The main bedroom had an ensuite bathroom and walk-in wardrobe, so Joanne claimed that for herself. It seemed a good choice as she was more social than I and the main bedroom was closer to the entertaining areas. I moved into the rumpus room that was large enough to contain my bed, desk, computer, television, chest of drawers and most of my clothes. It was also far enough away from the rest of the house to remain quiet if Joanne was entertaining. The second bedroom became my massage room and held the rest of my clothes.
We settled into a pleasant enough routine; generally sharing a few minutes each day after work, but otherwise leading independent lives. I was too tired and sick to care about what anyone else did, and isolated myself in my room as much as possible.
A few days after my move, I attended a lecture on herbal medicine for my naturopathic studies. As I sat in the lecture room, I became increasingly aware of incredible weariness, deep aching in my shoulders, back and hip and tremor. My hands shook, my right leg jumped and my head rotated from side to side rhythmically. I could not control the movements. My hand movements were quite peculiar in that, while my hands shook in a “Queen Mother’s wave” motion, my fingers continuously brushed against my thumbs as if I was “pill-rolling”.
The fatigue grew worse until I knew I had to get to bed or lie down on the floor and sleep there. So I left after apologising to the lecturer and made my way home. Once there, I just pulled off my boots and trousers and fell into bed, but couldn’t sleep. The movements continued and the pain grew worse.
During the day, I had seen my naturopath, Mr. Hainsworth Cock, asking for help with fatigue. He had noticed a ptosis (drooping) in my right eye, and referred me to a neurologist who, he said, was excellent, being a Professor of Neurology at a major Melbourne hospital. Unfortunately, the Professor was unable to see me for six weeks. So I had to wait, and manage, until I could see this man who would give me all the answers.
Work started at 7 am next day as usual, and I moved about my duties in a semi-dream state, sweating, shaking and aching. My fatigue was appalling. I had slept fitfully for two or three hours, and could not control my tremor, especially when I tried to relax. I felt dizzy and confused.
The theatres were busy but, after a few hours, I had to go and sit down somewhere, so headed for the change room. I couldn’t make it in one go, and stopped to support myself against a wall, then turned to lean my back against it. Fran, a senior nurse approached me about a problem with patient transport to wards, one of my responsibilities. I tried to listen, but felt myself sliding slowly towards the floor.
“Are you alright?” she asked.
I shook my head and mumbled something.
Fran grabbed my arm and helped into the office where I collapsed into a chair. I managed to tell her about some of my symptoms, my visit to Mr. Cock and my appointment with the Professor. She was not impressed with the idea of waiting for weeks, so rang the Professor’s receptionist and bullied her into giving me an appointment that afternoon. The hospital arranged a letter of referral from a physician there, who examined me and conjectured that my problem was Parkinson’s disease. I was beginning to think that myself, when I had the energy to think at all. I was given cab vouchers and packed off to the Professor’s rooms, part of a large house in a leafy Melbourne suburb.
I’m not sure what I expected. A sympathetic person to help me find a comfortable seat, perhaps. Or, at least, a kind look. Instead, I was told, pleasantly enough, to sit in the corridor and wait. Now the corridor acted as the Professor’s waiting room. The large front room was the office, with no room for patients. I was in pain, shaking, hardly able to walk or sit upright, sweating and confused, and forced to sit on a hard, armless chair in a narrow corridor with people walking past.
Eventually, the Professor came to the door of his room and called my name, then disappeared. I hauled myself to my feet and slowly made my way to his room, holding the wall and empty chairs for balance. The Professor held the door for me, closed it, pointed to a leather armchair, then sat at his desk and opened my letter of referral. He seemed to absorb the contents, then looked at me. I was asked a couple of questions about my work, proved that I could still move my hands reasonably well, then told I would need an MRI (Magnetic Resonance Imaging) scan as soon as possible. As it would take at least six weeks to obtain an MRI in the public system, he suggested that I pay for a private service. In ten minutes, I was back in the corridor, waiting for a taxi to take me back to Epworth.
My colleagues were very concerned at my condition and helped me arrange an MRI at the hospital on the following Sunday. The cost of $350 was to be paid on the day or would rise to $600. There were no concessions available other than this. My manager told me to have a few days off, so I drove myself home and tried to rest. I did not know what was happening. I had all the classical symptoms of Parkinson’s disease, and the hospital physician had suggested this, yet the Professor had made no mention of it and seemed unconcerned at my fragility. I was confused, frightened and dreadfully tired.
Joanne was very concerned at my illness and offered to drive me to Epworth on Sunday for the MRI. I was glad for her company. She sat in the reception area while I underwent the procedure, amused at how often she was called “Mrs. Coleman”.
MRI’s are wonderful diagnostic tools, but quite trying for the patient. I felt very vulnerable as I removed my clothes and donned a paper gown. I was cold and embarrassed at my appearance. I was asked to lie on a narrow bed with my head supported on a special pillow that would prevent it moving during the scan. Headphones were fitted to bring music I had selected to my ears. Then I was slid into a narrow tunnel. It felt as if I was being swallowed by the machine.
The operator told me they were about to commence and there would be some noise. A dreadful noise started, like a jack hammer in a steel barrel all round my head. It stopped and the music wafted through the headphones again. Then the operator said they were doing another scan and the noise started once more. This went on for sometime until I was shaken by the intensity of the noise assault. Joanne drove me home where I rested until the following day.
I collected the MRI films and report next day then attended the Professor’s rooms once more. I didn’t really feel safe driving, but it was virtually impossible to go where I needed to by public transport as it would have involved at least two trains and four trams, and many hours. Cabs were out of the question because of cost. So I drove, very carefully.
The Professor leafed through the MRI pictures quickly, said there were “no hard neurological abnormalities” (as had been reported by the radiologist), suggested I was under stress and prescribed Doxepin (an antidepressant drug) and two weeks leave.
I left him feeling as if I had wasted his time yet knowing that there was something dreadfully wrong with me. I am not a person who gives up easily or who talks myself into being sick. I had goals ahead and achievements to work on. I knew where I was going and what I wanted to do. I was certainly under stress, but far less than I had been while working at night and studying during the day.
I saw Mr. Cock and told him I was unhappy about the Doxepin and the treatment I had received from the Professor. Mr. Cock had great faith in The Professor and was inclined to accept his diagnosis, but suggested I take Tressos B (a nutritional supplement) instead of Doxepin, and commence craniosacral therapy. I decided to continue with my normal supplements of vitamin C, vitamin E and a multivitamin and mineral tablet. I later checked Doxepin in a major drug guide and found that its possible side effects mimicked the symptoms I was displaying. The prescription didn’t make sense to me.
Julie, my osteopath, had already examined me thoroughly, but went through the whole process again on my next visit. She also carefully looked over the CT and MRI films, spending minutes on each sheet to make sure she missed nothing. She then told me what I already suspected, that she thought I had Parkinson’s disease.
She then gave me her greatest gift. She said, “What do you want to do?”
“I want to get well,” I replied.
“Well, let’s make a plan then,” was Julie’s reply.
She didn’t brush me off by telling me I was incurable or stressed. She gave me her full attention and lots of time, then returned the power to be well back to me.
I decided to start with weekly craniosacral therapy treatments while I could afford it, and we set up regular times that fitted in with my work programme. I gave up any idea of continuing my studies.
Shortly after my collapse, I called my Naturopathic College to let them know what was going on. I told them that I was very ill, would not be at lectures for some time and, in fact, would probably not be able to continue with my studies at all.
The next day, I received a letter from the Principle telling me that the college would hold my place indefinitely, I would always be welcome to return as a student, and offering me any support they could provide. I have retained that letter as a treasure given in a time of great blackness.
Julie’s treatment was very gentle, focusing on balancing pulses in my skull and sacrum. It brought immediate benefits in reducing my pain a little and allowing me a little more sleep. Moreover, her gentle touch reminded me of loving touch I had not felt in a long time. I found that, if I spoke very slowly and was patient with myself, I could form coherent sentences, providing people were also patient enough to let me do it.
I didn’t know what to do or how to help myself. Without the routine of work, I could stay in bed as long as I wanted, but I was still in pain and often woke every hour to try and turn over. It was not possible to turn in the normal way; I could not make my muscles do what I wanted, so I would rock myself until I could roll out of bed onto the floor, turn around on my hands and knees, then crawl back into bed so I was lying on the other side. An hour later, I would reverse the process.
I also found that I needed to urinate frequently during the night, but it was so difficult to get to the toilet which was only about five metres from my bed. Again, I would rock myself to roll out of bed, crawl to the toilet, then haul myself onto the seat to sit there trembling and trying to empty my bladder without dribbling.
During the day, after struggling out of bed and into whatever clothes were lying around, I sat on a couch in our lounge most of the time, trying to summon the strength and courage to walk a few metres, and wondering how I could survive. I set myself the goal of walking to the front gate, about ten metres from the front door, without support. At the end of two weeks, I had succeeded, but the effort exhausted me, and I could only manage the task twice daily. For the rest of the day, I just sat, occasionally staggering to the kitchen to sit on a stool while I cooked a piece of toast, or micro waved whatever was left in the freezer.
On Monday September 4th, after two weeks rest, I saw the Professor again. He again looked at me briefly, suggested that I was recovering as my speech was a little clearer, did not have time to listen to my concerns, wrote another certificate for two more weeks sick leave, and dismissed me. I felt violated by his neglect.
There was nothing else I could do except try to gain sufficient strength to return to work. I had debts and responsibilities. If I died, Sean would be held liable for my debts (so I thought) and I did not want that. I decided to sell my house in Trentham as I no longer had the energy to care for it and needed money urgently. I asked the real estate agent to proceed as quickly as possible. I then set about gaining enough mobility and balance to return to work in two weeks.
Each day, I set a goal to walk a little further. This was such a painful and frightening process. Walking was painful in that my hip, back and neck hurt all the time but got worse as I moved around, and frightening because I was uncertain of my balance. I also found it very difficult to judge speed and distance so, to cross a road, I had to be sure there was no traffic close or I might have been run over. At the end of my sick leave, I could walk almost a kilometre. It was slow and painful and, at the end of the journey, I was exhausted. But I thought I could survive a day at work. I was close to being wrong.
I returned to work at Epworth Hospital on September 20th 1995, hoping to continue my recovery as I worked. But my first day showed how unlikely that was. Each duty took an enormous amount of effort and concentration. I could no longer move quickly and cope with many different demands at the same time. In the past, I had been able to help a patient, give instructions to another Tech, answer queries from a nurse and plan lunch relief all at the same time, while reserving a small part of my mind to mull over the lecture from the night before. This was no longer possible. My mind and body could now do only one thing at a time, and very slowly. Just to walk between theatres took time and concentration. Moving a patient was a chancy business, indeed. To converse with any one, Tech, nurse, or medical staff, I had to stand still and focus fully on forming words and sentences that made sense. By the end of my ten-hour shift, I was wrecked and could hardly drive home to rest. I ate a piece of toast, then collapsed onto my bed to sleep fitfully, painfully aware that I had to do it all again on the next day.
Day followed nightmare day and I somehow dealt with rosters, lack of staff, crises in theatre and all the myriad of things that make up a day in eight busy operating theatres. But I knew I needed help. I was reaching the end of my strength and hope.
There was a neurosurgeon practicing at Epworth who was always friendly and seemed to care about his patients as people. Because my MRI had shown a flattening on the left side of my skull, perhaps as the result of injury early in childhood, I thought it would be a good idea to seek advice from this man. So, on October 18th, I attended his office with CT and MRI scans in hand.
My time with the neurosurgeon contrasted sharply with my experience with the Professor. He carefully examined each picture of the MRI scan, asked me many questions and waited patiently for me to answer through my stammering, and gave me a thorough physical examination. He reached the conclusion that I had developed Parkinson’s disease and was also pretty stressed by my work. There was nothing he could do surgically as he felt that the skull asymmetry was “within normal limits”. He encouraged me to “keep doing what you are doing” as, he felt, I was a “pretty together sort of guy”. He also suggested I should only take medication if I really needed it.
I often wondered about medication in those days. My body would not work and my life was so difficult, I thought there must be a drug of some sort to help me. Yet, the neurosurgeon and another surgeon with whom I often worked, both encouraged me not to take medication because, in the words of one, “they won’t do you any good”. Was treatment of Parkinson’s disease so bad? Was the neurologist’s attitude the result of knowing he could give no help? My body and being ached for support and comfort but, it seemed, I had to find it away from western medicine.
My direct manager at the time, Angela, was a very insightful and humane nurse who became increasingly concerned at my condition. Through her good offices, I met a psychologist at Epworth for counselling. It was timely, as my collapse had made me face many issues from the past, especially my childhood. I was angry and frightened. I felt abandoned and terribly alone. I thought that I might die alone in my cold room, and who would care except Sean?
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I forget who told me about Peter Clarke. I had heard of flower essences; even used them sometimes, especially while I owned a health food store during the early 1980’s, and had faith in their power to bring emotional change. I was seriously ill and didn’t see how some subtler emotional changes would help me. But I went to see Peter anyway. If there was a remote possibility of improving my condition, I was prepared to try it.
I had returned to work on September 20th, and the ensuing month had been the continuation of a nightmare. Every movement cost me enormous effort. My sleep was fitful at best, at times less than two hours each night as I needed to turn often because of pain in my shoulders, but could not turn in bed; my muscles would not do what I asked. Visiting the toilet three or four times each night also required enormous effort as I couldn’t just arise from bed and walk, I crawled, then hauled myself onto the toilet seat. After spending many minutes trying to make sure I completely emptied my bladder, I could walk back to bed holding onto the wall, cursing the dribbles that invariably trickled down my leg.
I had become incontinent with effort, and was sometimes embarrassed in theatre when a heavy lift ejected dribbles from my bladder to make my underpants soggy and, perhaps, stain my white overalls. I started wearing green theatre clothes for a while as the top covered the pelvic area and, besides, it was much easier just to drop my pants for frequent toileting, rather than struggle out of a stiff boiler suit.
Dressing and undressing were difficulties I had to face frequently, but could not seem to improve. My coordination was so poor, that trying to don clothes without help took a long time. I had started rising much earlier, allowing at least an hour and a half to dress and eat something before work; mainly because of the time it took to dress. I was usually awake anyway, so it seemed sensible to make use of the time. I gradually limited my dress to items that were the easiest to don and remove. No buttons if possible – I was very slow and clumsy with fine movements like doing up buttons. Belts with big holes and boots without laces. But I had to dress, drive to work, undress, don theatre gear, then reverse the process at the end of the shift. If I wanted to leave the theatre complex during the shift for any reason, I had to dress and undress again. It took so much time and effort, and I was exhausted, frustrated and angry. Why did I have to face this alone? Where was God in all of this? Why didn’t I have family and friends who would drop in and help me, or tell me it would be alright?
So I went to see Peter Clarke, an unprepossessing man of gentle strength, living and working in an unnoticeable house in an ordinary street, part of a suburb you’d never visit unless you lived there or knew someone. I was doubtful, but prepared to try.
Peter asked some questions, then handed me about one hundred and fifty photos of flowers. He asked me to go through these at my own pace, putting aside any that generated strong feelings of like or dislike. I chose twelve I liked, and three I disliked. Peter arranged these in patterns, then started to describe my feelings of exhaustion, anger, fear and despair from what he saw in the flowers. I chose the five I liked most, and he prepared a bottle containing a few drops of each of these flower essences. I was told to put a few drops from this bottle under my tongue three or four times daily.
I had never seen flower essences used like this. My experience with prescribing and using flower essences had been at an intellectual level – here are the symptoms, here are the essences that fit those symptoms. A medical model of flower essences usage. It worked well, and I thought that was the only way it was done. But here was a man prescribing flowers from what I saw in pictures, and telling me things about myself that not even my mother knew from what he saw in the same pictures. It all seemed a bit too mystical, but I was prepared to go along as I was becoming used to the wonderful ways of the universe from my time at the Victorian Spiritualists’ Union.
I visited Peter every four weeks, and came to look forward to my hours there. As time went on, we talked about many of my childhood experiences, those I could remember at least, stresses and trauma in my adult life, Damian and Sean, and my dreams. My dreams were often very vivid, and Peter helped me understand what my mind was trying to say as we talked them through.
From as far back as I could remember (about five) until I was about seventeen, I had only one dream; a nightmare of blackness closing in and suffocating me. I often awoke screaming as a child and, as I grew older, would start up breathless and frightened, not wanting to go back to sleep in case the dream returned. As I grew older, my dreams became images in black and grey but, after counselling during the early part of my marriage, I started dreaming in colour, and much of the terror left me. Now the fear and violence returned, but not all the time. I dreamed of flying, being an aeroplane, of being a fast car, of standing on a beach with my feet not touching the ground. My mind was expressing my desire to be whole and light again. But there were dreams of violence, darkly coloured with flashes of red, frightening scenes of dreadful violence. Sometimes I felt that I was being assaulted. Sometimes that I was being violent and was afraid of the depth of anger and frustration that welled up in me. Nobody had listened to me in the past, not when I wanted to express very important feelings of fear, anger, pain and aloneness. Now my mind was helping tell this to Peter, and the flower essences were helping release some of the emotional tension.
Did this mean the Professor was right, that I was simply “depressed” and some drugs would “fix” me? I don’t think so. Three doctors and some other practitioners had already diagnosed Parkinson’s disease and, anyway, releasing these emotions helped me deal with life, but made no difference to my physical symptoms. I needed something else.
I continued to see Peter regularly for two years, and will be forever grateful for what he showed me and taught me about my own strength, beauty and ability to overcome the impossible. But I needed something or someone to help repair my body.
A friend said one night, “Perhaps you should see Marg Wood”. I had never heard of Marg Wood, but her name resonated with me in some way. My friend had never met Marg either, but her mother had seen Marg professionally, and praised her skill.
Marg is a homeopath of extraordinary humanity and knowledge. Hainsworth Cock, my first naturopath, had introduced me to homeopathic remedies and I had faith in their power. But I had never visited someone who used only homeopathics, and knew nothing about Marg except what my friend told me her mother felt. But I called and stammered out my story (my speech was still terrible), and Marg agreed to see me.
A few years after my first visit, Marg told me that she saw me with much trepidation. She had never treated anyone so severely affected by Parkinson’s disease and doubted that she could do more than palliate my symptoms. But, she said, I was so determined (pig headed was the term she used) that she felt bound to do her best to help me.
Our journey together was extraordinary. I had no idea where I was going and Marg could only work on what I told her, or displayed physically and emotionally. She used many homeopathic remedies, some to good effect, others with no effect, and some aggravated my symptoms. But we kept on trying.
Marg’s greatest gift to me was time. She sat and listened with endless patience. I talked to her about my family, work, friends, joys, fears and tiredness. She comforted me when I felt alone (often), and celebrated with me when I felt I had achieved something. My achievements were usually tiny steps; a slight improvement in speech, an extra hours sleep, managing buttons a little more easily; but Marg understood how much each tiny step cost me in time, practice, exhaustion and frustration, and celebrated with me.
I continued to work with Julie, Peter and Marg regularly, determinedly and impatiently. I wanted to feel well enough to live comfortably. I had no thought of complete recovery; that was too big a dream. I just wanted my pain to reduce, to get regular sleep, and to exist without the dreadful fatigue that was constantly with me. So I saw Julie each fortnight with visits to Marg and Peter each four weeks. I would have gone more often, but even a Technician in Charge is paid very little, and I was struggling to survive financially.
It is almost impossible to explain the terrible, black, cloying exhaustion that was my constant companion for nearly two years. No matter what I achieved in physical progress, I was always tired to the point of falling over. The only reason I could stand was the knowledge that no one would pick me up if I fell. Every movement, however small, was a huge effort, as if I was wearing invisible armour that had grown rusty, and so would hardly move. Speaking, or stammering, made me breathless and gasping to get enough air. This problem was exacerbated by my anxiety to get my message out before people walked away. Some were patient enough to wait until my stammering explanation became clear, but many did not have the time, and walked off in the middle of a sentence. So I was concerned to try and say whatever I needed to as quickly as possible, and this made my stammer worse. And each new effort increased my tremor when I rested. I know it seems crazy, but that’s how it was. I’d put in a supreme effort to finish a task, then reward myself by sitting down for a few minutes, and my tremor would get worse. It was so tiring. I was never still except when asleep. While moving around, I had an “intention tremor”, meaning that my hands and head shook as I was trying to coordinate my movements. So I had to concentrate very hard on everything or stuff it up completely. Combined with my stiff and slow movements (“paucity of movement” in medical terms), this increased my energy output for each task off the scale.
Then I would sit down for a rest, and my other tremor would kick in. Both hands shook rhythmically, and my fingers rubbed against my thumb as if I was rolling pills between them. My head shook from side to side as if I was scanning a thirty-degree area ahead of me without moving my eyes. My right leg jumped and shook, but both legs were restless and I had to move them often. I couldn’t rest, there was too much movement. So I would try to stretch and relieve the tremor, or meditate, or listen to music, but to no avail. I had tremor and that was that.
When I went to bed at the end of a tough day, and every day was tough then, I went into spasm for a short time before settling back into my normal tremor. My shoulders and torso would heave and buck violently until, sometimes, I would feel as if I was going to buck off the bed. But I couldn’t stop it, I just had to wait until it subsided naturally. Sometimes I spasmed for seconds, sometimes for a couple of minutes. It was frightening. Nearly two years later, these spasms returned briefly after a long absence. I was sharing my bed at the time and remember the look of horror on my partner’s face as my body heaved itself up then slammed back onto the mattress over and over. When I lay still, sweating and gasping for air, she could only lie trembling beside me, weeping softly.
Despite all obstacles, I seemed to be making a little progress. My speech improved slowly and, with patience, I could complete a reasonable sentence, although I often needed to stop in the middle to drag air into my lungs. My balance had certainly improved and I could sometimes walk several metres without support at work and, on my days off, sometimes walked a kilometre, slowly, without aid.
Marg suggested I should return to the Professor for an assessment and a second opinion. She was still very concerned and felt that the combined efforts of medical and non-medical therapies might help me more. So, on the fifth of February, 1996, I again walked into the Professor’s little office. Nothing had changed; he didn’t look at me as he quickly scanned through my file then asked me how I was feeling. I expressed some pleasure at my progress, and he said that my speech had improved, and it was good that I was feeling better, and he’d see the next patient now.
I exploded. “I don’t give a shit about my speech!” I said, in my best stammer. “What about my pain? What about my tremor? I can’t walk properly, I’m tired, I feel awful. What about all that?”
The Professor stared at me for a moment, then said, “Well, I suppose I had better examine you.” I was angry enough to hit him had I been capable. Why hadn’t he examined me five months previously? Why hadn’t he taken note of my symptoms when I needed help the most?
The Professor asked me to carry out a variety of tests; touching my fingers and thumbs, following his finger with my eyes then touching it with my finger; some other coordination exercises. He checked my reflexes and passive joint movement. In fact, he gave me a quite thorough examination for the first time. Then he said, “I think you have Parkinson’s disease and are developing Multiple System Atrophy. When you get worse, we’ll give you some drugs to keep you comfortable for as long as possible.” He then asked me to see a colleague for a second opinion and arranged for a referral.
His colleague, Doctor R, sat back in his chair and gazed vaguely over my head while he asked me some questions about what I felt my symptoms were. He looked briefly at the Professor’s letter, then asked me to walk up and down a short corridor. There were other people scurrying around, minding their business, and I was embarrassed. I focussed and walked as carefully as I could. I was pleased that I managed the length of the corridor and back with barely a stagger. Doctor R bent my wrists a couple of times, asked me to touch my fingers to my thumbs, then dismissed me, saying he would contact the Professor.
I never went back to either of them. My disgust at the treatment I had received from these people who claimed to be experts in neurology, and who represented the pinnacle of medical care, outweighed any benefits that might have been derived from seeing them again. Four years later, the Professor wrote to me about statements on my website retelling the story of my medical diagnosis. He claimed that he had examined me thoroughly on my first visit and that I should change my story. If he did examine me, as he said, how could he diagnose “stress” on my first two visits, and Parkinson’s disease after five months when my condition had, in fact improved? In a separate letter, the Professor also claimed to have tested me for Wilson’s disease. This requires, at least, a blood test that was never carried out.
As I look back today at those terrible days of desertion by the medical profession, black loneliness at home, and support by my non-medical practitioners, I am grateful that I was not offered more humane medical care. I would have taken anything to make me feel better. My life was a minute-by-minute hell and I wanted out; in any way. I would have accepted medication from doctors at any time up to my examinations by the two “experts”. After that, I knew they knew nothing about me and didn’t care. So I became determined to find my own way to survive Parkinson’s disease and live in reasonable comfort. I resumed my journey with Marg, Julie and Peter, hoping to feel better soon, but with no thought of complete recovery.
When a friend asked me to be a drink waiter at her wedding, I was amused at her naiveté and humiliated at my inability to comply with her request. “How can I pour drinks?” I asked, “Look at me. My hands shake, my head wobbles, I drop things. Sorry; I’d love to help, but I can’t.”
“We really want you to do this, John,” she said, “And you’ll be the cheapest drink waiter ever. Look, we’ll give you a bottle of water,” and she started to shake her hands violently like mine when I was agitated, “and by the time you pour it, it’ll be champagne!”
I found myself laughing without constraint at my strange appearance for the first time since diagnosis and accepted her invitation. The wedding reception was wonderful. People stood around a beautiful garden on a balmy afternoon, eating, drinking, talking and laughing. I had a trestle table laden with drinks to administer and the biggest tremor you can imagine. But it didn’t seem to matter. If my hands wobbled while pouring, guests would move their glass to catch the drink. If I spilled it, nobody cared. Sometimes, one of the young boys at the reception would stand beside me and steady my arm to help me pour straighter. People smiled when I stammered and waited for me to finish what I was saying.
At the end of the day, I gladly helped with the dishes and felt human again because I had been treated as a proper person with something useful to contribute. When my friend offered me money, I refused, telling her that I had enjoyed myself so much, money was totally unnecessary. But she insisted. “We would have had to pay someone else, John. And you did a lot more than your job. This is just as gift from us to say thankyou.” She pushed some notes into my pocket and hugged me. That day was a great gift.
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My progress toward health was slow, stumbling and uncertain. But I felt I was getting somewhere. Perhaps I would never be fully well, but I believed I could improve my life significantly and reach a stage of caring for myself in reasonable comfort. Until late October 1996.
It’s boring making a list of symptoms, but it is important to understand my state of health at this time. I was certainly in a better state than in August 1995, but still obviously unwell. My back, shoulders, neck and right hip ached constantly and made rest difficult. My hands tremored at rest with pill rolling and, often, tremored with action. My right leg was slow to respond, so causing me to limp and walk carefully. My walk no longer festinated, but I still ‘froze” sometimes. My coordination was very poor and visual acuity still a little uncertain. I suffered breathing difficulty (dyspnea), especially when speaking, and my speech had improved, but was obviously stuttery and dyslexic. I functioned much better than I had in 1995, but was slow, uncertain, sometimes confused, and displayed significant Parkinson’s disease symptoms including incontinence and constipation. But I knew I was improving.
I had noted a strange happening on one day at work. Late one afternoon, I was exhausted and had to lie down for a few minutes. The only available place was a theatre not being used at that time, so I lay on my back on the operating table, and closed my eyes, feeling my body tremble, twitch and shake.
The theatre door opened and two instrument washers walked in, chattering about the day’s events. When they saw me, they stopped, knowing my plight and appreciating the effort it took to complete each day far more intimately than my more lofty colleagues, nurses and doctors. One stood at the table gently massaging my head, especially on the sides. My tremor stopped, and I felt relaxed for the first time in over a year. My colleague moved on and I lay there for a few moments, enjoying my stillness. When I stood up, I was amazed that the stillness was retained, and stayed with me for about five minutes.
What had happened? Did the massage have an influence on deeper structures in the brain? Was it a variation on the cranial work Julie did? I wrote a note in my diary and relished the memory of stillness for a long time.
October 1996 brought a change for the worse. I didn’t know why, except that I was very tired and needed a break. I had returned to my naturopathic studies in July, and this had increased my workload and fatigue a great deal. My back pain, stiffness, dyspnea and depression worsened. However, from October 22nd, I seemed to make a little improvement. My energy increased, but I felt as if I was developing a urinary tract infection.
I slept in a little on Sunday October 27th, then had a quiet breakfast and tried a couple of gentle exercises. Joanne was away for a couple of days and I had the house to myself, so decided to have a day of rest. While walking through the lounge, I suddenly felt an agonising, burning pain rip up my back. I collapsed, screaming, onto the floor and writhed helplessly, biting at my knuckles. My diary note says, “This was the worst pain I have ever experienced. I could only scream, bite my hands and tear at myself. I was incapable of resting or calling for help.”
Wave after wave of pain swept through me. Somehow I managed to crawl to my room and lay on the concrete floor waiting for someone to help me. I could not get to the telephone to ring for an ambulance or contact a friend. After six hours, as suddenly as it came, the pain went and I crawled into bed, falling asleep almost instantly.
Six hours later, the pain hit me again and I rolled out of bed in horror, screaming and biting, trying to distract myself from the dreadful agony that would not stop. I tried to crawl to the phone and call for help, but could only writhe on the floor beside my bed, screaming.
Six hours later, I clambered into bed again and fell asleep. The pain had gone.
Joanne and I needed to find somewhere else to live as our house was being sold, so, next day, I drove a short distance for an inspection. Just as I arrived at my destination, I felt the back pain returning. Hurriedly, I did a U-turn and drove as fast as I could toward home. The pain increased rapidly and I started screaming and biting my knuckles again. My vision was blurred, but I kept going. I don’t know why I didn’t drive toward a hospital, I just wanted to get to the safety of my room. Staggering inside, I lay on my bed, waiting for the pain to go.
When relief came, I called Marg Wood to see if she could help, but had to leave a message on her machine. I left my mobile phone number as well as my home number. I was, however, able to get an appointment with Julie and hoped that her bodywork would relieve whatever was causing this pain.
Julie was gentle and caring as usual, and I felt better after her treatment; for about ten minutes, then the pain hit me again as I was driving home. Marg rang on my mobile just as I was thinking I would have to stop the car and sit it out on the roadside. Marg asked me to go straight to her place if I could.
The pain was easing as little as I arrived at Marg’s clinic and I was able to sit quietly for a few minutes explaining what had happened. Then I felt it coming again and I squirmed in my seat. Marg hurried from the room, then quickly returned with one little homeopathic pill in a plastic lid. “Open wide”, she said, then threw the pill into my mouth. “Let it dissolve” she instructed, then sat and watched me. Within a minute the pain subsided, and I slumped into the chair with relief.
Marg gave me some homeopathic pills to keep with me in case the pain returned, and sent me home to rest. I felt some pain in the evening so took another dose and slept well. The agony never returned, but it took some days to recover. My back remained tender and stiff and my urinary symptoms worsened. I felt more confused and had difficulty in coping with all that I had to do.
After ten days or so, I started to lift again. Despite a car accident on November 6th (fortunately I was completely without fault, so could remain fairly calm about it all), I slowly gained some energy and saw a slight reduction in some symptoms. I was back to my frustrating, fluctuating, arduous walk towards better health.
Progress was so slow I often thought I was getting nowhere and seriously considered giving up. I tried to motivate myself into looking for places I could go for care; perhaps persuade a doctor to pronounce me eligible for an invalid pension, and enter a low-care facility somewhere. But I couldn’t face the prospect of the hours of searching, nor the ending of my independence. So I plugged on, day by day.
My life settled into a routine of working ten to twelve hours for four days each week, about six hours on the fifth day (this was the way I had set up the hospital roster), then some on-call duties over the weekend. I attended lectures several evenings each week when I could make it, and my Spiritual Development class as often as possible. Sometimes, the operating lists ran so late, I had no hope of getting to lectures or meditation, and I didn’t always mind as I was exhausted at the end of each day.
With regular visits to Marg, Julie and Peter, I maintained a lurching, stumbling pathway and maintained the hope of better health.
***********************
1997 brought beginnings and endings. I ended a relationship that had promised much, but delivered so little. It was to stumble on for a few more months but, in reality, ended in February.
I also left Epworth as a full-time employee. It seemed better to work casually during my last two years of study so I could attend lectures more easily. My work at Epworth was very demanding, and often kept me away from lectures, or made me too tired to study.
So began a new era of uncertain employment, but a sense of freedom and greater control over my destiny. However, I was still very ill. I tried to tell myself that I wasn’t sick, that I was, in fact, a “healthy person displaying some symptoms”. It didn’t work. My body assured me vehemently that I was sick; that I had Parkinson’s disease. Working at different hospitals meant that I had none of the responsibilities I had found so burdensome at Epworth. I could walk into a theatre, do my best for the time I was needed, then leave without looking back or worrying about tomorrow. But it also meant that I had to learn new routines, and get to know new people every time I was called to a different hospital. I found that stressful but, on balance, it was a better lifestyle.
My studies were nearing the end, even though I still had two years to go. I had reduced my study load to manageable levels, so extending the time. But I still felt like giving up sometimes. I was so tired always, and dragging myself up the steep stairs to our lecture rooms was a monumental effort each time. Every now and then, however, I would encounter a member of college staff who knew my plight and they, seeing my weariness and flagging courage, would smile and say, “Keep going; you’re nearly there,” and that would push me along for a little while longer.
I struggled up the stairs one evening and entered the lecture room as Jaroslav (Dr. Boublik of Wild Medicine), was delivering a lecture on one of their products. I settled down in the back seat as usual, my mind half on the day’s events and half on what Jaroslav was saying. I was half asleep when I realised he was speaking about another product, the Aqua Hydration Formulas. Jaroslav talked about hypothalamic control of water absorption, our need for efficient hydration to achieve optimum health, and the influence water has on so many bodily functions. He told the story of developing the formulae to help endurance athletes maintain hydration during events and how that helped his own marathon performance.
Jaroslav’s words started a thought process in my mind. Vague ideas swirled around trying to take shape. I couldn’t fully grasp the concept of hydration, nor see exactly how it applied to me, but I knew I needed to try these remedies.
After class, I spoke to Jaroslav, described my condition and asked where I could get some Aquas to try. He seemed quite excited as no one had tried the products for treating Parkinson’s disease before, and I was presenting them with an interesting trial. He promised to send me a set of Aquas for men (men and women have different hydration needs, so there are gender specific formulae), without charge, provided I kept notes of my progress and contacted Wild Medicine occasionally. I agreed.
I carefully read the labels when the Aquas arrived a couple of days later, then started taking the maximum recommended dose of seven drops in apple juice and water morning and evening. I was excited, as I believed this was the breakthrough I had been looking for. Here was the therapy that would kick me out of my current “marking-time” mode into strong forward progress.
My diary notes tell the story. Each day I noted how tired I was, with increasing pain and losing the desire to go on. The pain in my right shoulder, especially, increased beyond bearing, and every movement became exquisite agony. By Thursday October 16th, I was too tired and in too much pain to care about life, getting better or proving anything. My pain levels were close to my earlier back spasms, but did not stop. Pain pounded at me all day and through the night. I could see only blackness and more pain ahead. I had no one to turn to, no one who cared enough to call and see how I was or whether I needed help. I felt totally alone and hopeless.
I knew it would be easy to end my life without pain. I had access to local anaesthetic and scalpels at one of my hospitals, and planned to deaden my left forearm, tape it over the toilet bowl so I wouldn’t mess up the house, then open the radial artery as far as I could. I figured I’d fall unconscious before I died and would be quite comfortable. But I had to wait for a couple of days before I could get the drugs, so sat down to write a letter to Sean explaining my actions.
Writing that letter was so difficult. My boys had never given up no matter what they faced. Damian lived and died with such determination and love that he changed lives. Sean had faced extraordinary challenges and never stopped trying. And here I was planning to end my life because I could no longer stand the pain and loneliness. How could I explain that to Sean, yet let him know how much I love him?
I took Friday as a “sickie”, left the letter for the weekend, and visited a Reiki practitioner. It was something to do. Vicki’s name and phone number had been given to me by a friend, but I had never made contact. I didn’t want to stay at home by myself doing nothing but replay my suicide plans, so decided to spend $50 visiting Vicki. As I entered her room, she said, “Don’t worry about wanting to commit suicide. We can work on that”. I was stunned. She sat with me for some time as I explained my feelings, the pain, the blackness. She listened, spoke little, but seemed to really understand what I was saying.
Vicki asked me to lie on her massage table then, with the assistance of a student, gave me spiritual healing for nearly an hour. For a long time I felt nothing then, suddenly, the pain in my shoulder began to diminish. It was as if someone had pulled out a plug and the pain could flow down the drain. By the time the session was over, my pain had reduced by about fifty percent and I decided I would try for another week. I kept my suicide plans in the back of my mind for future use, but thought it was worth trying just a little longer.
That was the last time I planned to end my life.
My friend was having a birthday party the next night. I didn’t feel like being jolly and happy as I was still very tired and in considerable pain, but thought it was better than staying at home by myself and getting miserable again. My thought processes had changed subtly. There was an idea burbling away at the back of my mind that perhaps I could do something for myself, and get a little better. So I went late, just to wish him well, planning to leave early.
It was difficult to walk into the house through the darkened carport. Twenty-four hours earlier, I had stepped back from the brink of suicide. I was shaky and my head was buzzing with conflicting thoughts, but I was made welcome and found a few people I could talk to easily, so stayed for a couple of hours. During the evening, a beautiful young woman made her way to my side and began asking about how I was managing, was life good and many questions that seemed to indicate that she really cared. I’d met her once before and was flattered that she remembered me, and seemed to care. I found myself telling her about my close encounter with death, fearful that she would be disgusted with my weakness, but wanting her to know. As I left a little later, she walked to my car with me, gave me her card and asked me to call soon.
A few nights later, we had dinner together, then walked by the sea hand in hand. I was so happy. Somebody loved me and wanted to be with me. We talked for hours about ourselves and life and all sorts of things I have forgotten. I asked if I could see her again, and she said yes, so we joined some friends for supper a few nights later. She was unwell and the evening lacked the brightness of our first hours together, but I realised I was falling in love with her, and felt a purpose in life for the first time in many months.
I wrote a poem and sent flowers, but we spoke only once on the telephone after our second evening, then she stopped answering my calls. I heard later that she had gone back to her old boyfriend and was afraid to tell me. I wish she had been honest, as I would have spent less time wondering. But it didn’t matter really, she had helped me find a new path out of darkness. Just those few hours spent in the company of a caring companion made the difference between moving onward and sinking back into blackness. I hope she reads this and understands how important she was in that terrible time.
I decided to stop taking everything and try to figure out where to go from here.
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Discovering a way to achieve better health wasn’t a simple evolutionary process. While I tried to think logically about what was happening in my body, the scientific and medical literature, and community, offered no hope of improvement, and there seemed no logical path to follow.
Discovering the Aqua Hydration Formulas may have seemed serendipitous, but was probably the result of many hours spent wondering how to make brain cells grow again. Had I not felt that was possible, I probably would not have taken any notice of what Jaroslav was saying during his lecture. In retrospect, I can only feel that I was guided to the lecture that night as I had missed many in the previous weeks. I also felt, instinctively, that I had to try these products.
One of the major changes that happened, with my association with Wild Medicine, was that, for the first time, I met a person steeped in science, with long experience in conservative scientific research, and who had specialised in neuro endocrine research, who listened to me and seemed to understand at least some of my desperate search for wellness. Even though I had met good, kind doctors from time to time in my work, none seemed to be able to empathise with my need to gain real wellness as opposed to controlling symptoms. Jaroslav entered into my adventure with enthusiasm even though he struggled to fully comprehend the extent of my debility and how close I came to extinction.
Leonie Hibbert, the “other half” of Wild Medicine represented the best of non- western medicine. Kind, generous and spiritual, Leonie met me from the heart, yet presented herself and her practice with complete professionalism. She brought to me a depth of knowledge about the link between my spirit, mind and body that I had struggled to grasp before.
Jaroslav and Leonie gave me the knowledge, support, wisdom and encouragement to try the Aquas a second time and this, more than anything, has created the ground swell of recovery from “incurable” neurological disorders that is growing so strongly today. Without the second chance that these two people gave me, I would be totally debilitated and needing full-time care.
I don’t see my action in testing the Aquas as particularly brave or adventurous. I had no other option. The medical profession offered only temporary relief at best, and total neglect at worst, while non- medical therapies held little or no hope of recovery. The alternative was, as I have said, to descend into the long night of helplessness, unable even to make the decision to die.
We still have a great deal to learn about the mechanism of action and full potential of the Aquas. We also need more research into refining the technology to help people more. But discovering the Aquas changed my life irrevocably just as powerfully as my discovery of spiritualism in 1994.
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Parkinson’s disease is seen as a relatively benign disease compared with the more virulent disorders like cancer. People with Parkinson’s disease tend to disappear as they grow more dependent, and become isolated from a society that does not want to see them. The symptoms we develop embarrass us and make us want to isolate ourselves. We don’t want to be seen as we shake, spasm, dribble, stumble, lose our ability to show emotion, slop food and spill drinks. Groups of people confuse us as we find it hard to focus on more than one conversation at a time. So we move back into a safe, private world.
I had to stay in public view, as I needed to earn enough for survival. But I hated who I was and what I looked like. My tremor was constant and debilitating. My fatigue and pain tempted me to hide or snap irritably at others. Walking was a major effort; difficult to begin, dragging and slow, stumbling and festinating, with frequent falls. Walking up even slight inclines or low stairs exhausted me. Conversations were always one-sided, as my mind was clear on what I wanted to say, but my speech was hesitant, incoherent, slurred and left me gasping for air. Some people walked away during a conversation, too impatient to wait for me to finish.
At the end of a shift at a hospital, I would return to my room, longing for someone to set a meal before me, tuck me in bed and tell me it was going to be alright. But there was always something to do; prepare food, wash clothes, clean up my part of the house, rosters for the hospital, study.
The days seemed never-ending as I struggled to complete ordinary tasks of day-to-day living; the nights were torments of fitful dosing and long hours of painful restlessness with frequent, crawling visits to the toilet for partial relief.
I would often lie in bed wanting the night to end so I could shed the fear of dying alone in the darkness, but dreading the dawn as it meant a return to the battle of daytime survival. Even the view of our bushy garden as the rising sun glimmered through the trees could not ease the terror of having to face another day of monumental effort and impatient, pitying looks from my colleagues.
Only those who have walked this journey can truly know what it is like. I had watched my son die before my eyes years before and remember the aching agony of feeling him being torn slowly from me. But, in these dark days of 1995 to 1997, I watched myself slowly dying, and could not find comfort or peace in the watching. For all my searching for answers and brave statements about “getting better”, I had little hope that I spoke truth. Perhaps I didn’t want to; I could see only more aloneness if I did recover, and could not find enough of myself to be content with that.
When I review this time, reading my diaries and remembering, I can only wonder that I did not contemplate suicide more often. I frequently wished to sleep into death. Dying in bed seemed to be the most satisfactory and comforting solution. I sometimes went for long periods without eating, too tired to prepare anything and thinking, perhaps, that this was a way out. But there was always someone, colleague, fellow student or friend, who would tell me I was looking better, or I was doing well, and this was just enough to help me through another day.
I often thought about seeking medication, but was so angry at my treatment by my neurologists, and dissuaded by the words of my medical colleagues, that I hesitated to take any action in that direction. So I continued to act the courageous searcher, hoping someone would see through the mask and take care of me, longing for the one person who could see, and love, the beautiful person inside my crippled costume, and ask for nothing in return.
Perhaps some did see, but didn’t know how to reach that person. Perhaps my fear and anger created a barrier that stopped them getting closer or expressing their love. I don’t know, only my friends can answer that. I needed someone strong enough to batter down the walls of isolation and pigheadedness, to find the crying child and terrified man inside, to let me cry and be me. But no one could find me through the fog of illness and artificial courage and, in that long procession of painful days and dreary nights, I could not find myself.
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While I was disappointed and angry that the Aquas had not become the miracle medicine I had hoped, I felt it was important that I told Wild Medicine of my experience. The rehydrating process that Jaroslav had described in his lecture made sense to me. It seemed logical that creating an environment in our bodies where more water was available to transport nutrients into our cells, flush out wastes, and support the intended function of each cell would enhance our health. But it hadn’t worked for me. I thought that was my fault. Perhaps my body was different and just wouldn’t respond to this logical process. I was aware that I was very sensitive to homeopathics, and had aggravated on many that Marg had tried, even to those which caused very little aggravation normally.
I wrote to Wild Medicine explaining my experience and concluded that, while the Aquas were probably good medicine, they were no good for me. Jaroslav replied quickly asking me for more information and suggesting that they would like to test me to see why the Aquas had aggravated my symptoms, when there was no other example of aggravation with the Aquas. Jaroslav assured me that they would not attempt to persuade me to take the Aquas again against my wishes, but wanted information so they could understand what had happened, and avoid such experiences in the future.
I met Leonie and Jaroslav in their East Melbourne offices, a discrete brick building that retained an air of grandeur from its days as a gentleman’s residence. I felt awkward and ungrateful sitting in their reception area; after all, I had been given free samples of the Aquas, and here I was complaining about the effect. I was tired and shaky, disappointed that I was no better in health and, once again, had been let down by a therapy that held so much promise.
Jaroslav and Leonie explained that they had heard from many people who found that the Aquas had enhanced their health. Both used the Aquas in their own health programme and had gained benefits. They had never heard of anyone reacting in the way I had, but they had never used them to treat neurodegenerative disorders before and wanted to find out what had happened. They, once again, assured me that they were only interested in obtaining information, and whether I ever took the Aquas again was entirely up to me.
After nearly an hour of talking and muscle testing, we reached the answer. I had approached my experiment with the Aquas with the same determined enthusiasm I had applied to every other therapy I thought had some possibility of helping me. The Aqua label suggested I could take up to seven drops morning and evening, so that’s what I did. Seven drops every morning and seven drops every evening without fail. I didn’t want to waste time in moving slowly.
Leonie’s testing indicated that all I really needed was four drops three times weekly in the evening only. I had taken eight times my required dose! While this would normally not make much, if any difference, Jaroslav and Leonie conjectured that all the work I had done previously with homeopathics, flower essences, counselling and meditation, had made me very sensitive to the Aquas, a homeopathic complex. They thanked me for my cooperation and left it up to me to decide whether or not to try again. They assured me that I could contact them at any time for information or help.
I was afraid to try again. I had come so close to death by my own hand that the prospect of approaching that black and painful place again was terrifying. I wanted to feel better, but was tired of taking risks and being alone.
It wasn’t until early 1998 that I was brave enough to try the Aquas again. I was still afraid of reaching the brink of suicide again, so called some friends and told them, briefly, of my experience and asked for help. This was a new experience for me in itself. I rarely asked for help. I had been told very young that I was the one in the family who took care of the others, and I could look after myself. Asking for help seemed more than I deserved. But I was smart enough to realise that I would not be brave enough to try the Aquas again unless I had some support. So I asked each friend to call me at 9:30 pm on a specific night, to make sure that I was still alive and not contemplating suicide. I asked them to call the police if I did not answer the phone. I was very serious about the risk involved.
Each evening, a friend called at the appointed time and I was able to assure them that I was okay and feeling hopeful. This was the most consistent human contact I had experienced during my journey and, although our conversations were brief, it help me realise that there people who loved me and wanted me to stay around.
One evening, a friend missed the call. I was feeling fine, so it didn’t matter from my point of view. But she called late, in a panic, in case I was dead, or ill. It was a minor revelation. I realised I no longer needed protection, and I was getting better. I felt I had a long way to go, and may never be fully well, but I was improving slowly in energy, mobility and determination. The Aquas were working!
Without my daily diary entries, I may not have noticed the progress I was making. It was slow and uncertain. Reviewing my entries, I noticed that I slept a little better on some nights, and had fewer episodes of severe pain. I seemed to be coping with work more easily, and noted more positive feelings about my study. It was significant that I had continued to study despite my brush with death. Perhaps some part of me knew that I would get through, no matter what my mind told me.
Even though my College had offered to always hold a place for me, and I appreciated the care given by them, I believed that I would never be able to reach my dream of working as a naturopath. It had been too long and I could see no way out of my illness.
However, by the middle of 1996, I was ready to try again. I was still very ill and wobbly, with severe tremors, pain, and many other symptoms. At the end of each day, I was so exhausted I often neglected to eat, choosing to fall into bed and toss restlessly until morning. But some core of determination made me go back to the Australian College of Natural Medicine to complete my studies.
Many of my lectures were conducted at the college premises on the upper floor. The stairs leading up to the lecture rooms are steep and narrow. This is no problem to normally active people, but even the slightest incline, or smallest stair, brought me to the point of collapse. So, each lecture night, I hitched my bag over my shoulder, grasped the banister with both hands, then hauled myself up two or three steps. There I would wait until I could catch my breath and my heart slowed down, then climbed a couple more steps, waited, then again, and on. I would arrive at the top of the staircase exhausted and sweating, shaking uncontrollably, gasping for air. I would wait for a minute, then walk slowly to the room, supporting myself on the wall.
Some of my fellow students understood what it cost me to get there, and I was often offered a shoulder massage, a hug or a healing hand on my back. They kept me going. But I needed more.
I had read a story about Bowen Therapy in an English journal during the latter part of 1996. This gentle therapy attracted me and I instinctively felt that I needed to know more. By mid 1997, I had found a teacher and spent an intensive three days with Rick Loader and three other students experiencing the power of gentle touch. Within weeks following the workshop, my part-time massage practice was almost exclusively Bowen Therapy. Massage could not produce the same therapeutic results as even the basic Bowen Therapy I had learned and, once a client experienced the power of my new therapeutic tool, they wanted nothing else. But, other than during the workshop, I had not thought of trying Bowen Therapy for my own health.
Even with the improvements afforded by my new Aqua regimen, I was troubled by a very painful, frozen right shoulder. By moving slowly, I could use my right arm for minor tasks, but could not move it quickly, or lift even a moderate weight without the most intense bursts of pain. I often walked around supporting my right forearm to prevent pain from movement, and had not been able to fold my arms for two years. I thought Bowen Therapy was worth a try.
Rick, my Bowen teacher, agreed to see me once a fortnight as an experiment. He would have preferred to see me more often, but I had little money to spare and felt I could only afford the less frequent treatments. After each session, my pain diminished, and energy improved. I found myself thinking more positively about life and the future as most of my symptoms slowly reduced in severity. There was a definite cycle over the fortnight as I noticed an improvement quickly, but was aware that the benefits of the treatment slowly reduced over the two-week period.
My shoulder remained stubborn, however. No matter what Rick tried, the pain was just as intense, I could move only slowly, and could not lift it more than nipple height. I still could not fold my arms at all.
Rick asked me to see his teacher in Geelong so, one Friday, we queued up in a crowded waiting room with twenty or so other expectant sufferers. The treatment was swift and almost impersonal. A quick assessment, off with my clothes and onto the bed, half a dozen moves and “that’s all thanks, put your clothes on now”.
I was disappointed, having expected the gentle, caring environment I experienced with Rick. I climbed off the bed, dressed and sat down on a hard chair. Without thinking, I folded my arms! Certainly there was some “pulling” in my muscles, but no pain. My right arm was mobile again after two years.
There was still work to do, so I resumed my fortnightly visits to Rick who maintained his gentle approach and allowed my body to continue its own healing process. My shoulder remained free and painless so that, in June 1998, I celebrated my first pain-free birthday in thirty-two years.
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It was all very well starting to believe that I could achieve total health again, but I wasn’t sure that I knew what to do with it. My disease had all but consumed my life with the intensity of my effort to find a solution. I lived with it, talked about it, thought about it, almost became my illness, until I could think of little else. All at once, in early 1998, I was facing the prospect of becoming well and no longer having illness to work on, talk about, or to make me “interesting”.
Consciously, I wanted to be well. I was desperate to resume normal life. Yet, I had almost forgotten what normal life was. The two and a half years since my collapse seemed like a lifetime; as if I had died in the first half of 1995 and been reborn as a sick and lonely old man.
I clung to the remnants of my illness as a drowning man will cling to a sinking boat. It was not until I found myself caring for a very ill young woman, that I had to face the prospect of being free from the symptoms of Parkinson’s disease. We were talking about illness one evening early in April 1998, and she said to me, “But you don’t have Parkinson’s disease”.
“I am getting better,” I replied, “I’ll beat it one day.”
“You don’t have Parkinson’s disease,” she repeated emphatically.
This forced me to really examine my body and ask my friends about what they saw. Our conclusion was that I no longer displayed any symptoms of my diagnosed condition. I was tired from over work, and emotionally frail, but there were no symptoms of Parkinson’s disease visible.
It was a strange time. I was too afraid to celebrate wellness. Everything I had read, every expert I had consulted, had told me that Parkinson’s disease is incurable and, therefore, I would never be well. So I lived in fear that the symptoms would return. Every ache, every stumble, the slightest tremble, even when I was exhausted, was seen as a return to Parkinson’s disease. But I got on with life and completed my studies by the end of 1998.
One of the requirements for my Advanced Diploma of Naturopathy, was a research paper on a subject of my choosing. Of course, I chose Parkinson’s disease. I had piles of literature, studies over the years, drugs, surgery, magnetic therapies, dopamine agonists, MAO B inhibitors, depression, diet, and a host of conservative and off-beat therapies. I summarised them all, then wrote my own story as succinctly as possible. By then, I was able to include two early case histories as well.
Even though I could not practice as a naturopath until graduating, two people had approached me, having heard of my recovery, and asked for help with their Parkinson’s disease. I could offer nothing except my own experience, but that was enough. They had been given no hope and were desperate for any chance to regain wellness. Both tried the Aquas and Bowen Therapy with marked improvement in their level of wellness. It helped me realise just how fortunate I was to have been guided into this journey.
I am not a religious person in the sense of seeking comfort in dogma and ritual. But I believe strongly in a great creative force (“God”, “Spirit”, “the Universe” or whatever you wish to call it), and that we are provided with opportunities and guidance if we wish to avail ourselves of that assistance. I believe much of my journey was guided, even though I was too ill and sad to see it until later.
Late in 1998, I completed my Advanced Diploma of Naturopathy at the Australian College of Natural Medicine in Melbourne. It had taken nineteen years of interrupted study and had cost me every last bit of strength outside my efforts to be well again. I didn’t win any awards for scholarship or achievement, but the College presented me with a prize just for finishing. This recognition meant more to me than any glittering trophy for scholarly achievement.
I decided to arrange a party early in 1999. I called it my “At Last I’m a Naturopath and I Used To Have Parkinson’s disease Party”. Many of my friends, colleagues and fellow students came, plus Marg Wood, Sean and Lizzy. I drank three bottles of Champagne, and spent a long time thanking those who helped me. I won’t do that here. You know who you are. Those who accepted me and loved me when I was old and ugly, cranky and disgusting, hopeless and ready to die. Those who gave me something to live for and a vision for the future that was lovely and loving. Thankyou. Without you, I would not be here.
This is not the end of my story, but the beginning. I am a naturopath. Each working day, I sit in my room with people who dare to challenge their pain and find a personal road to health. Their courage and determination inspire me. The pain they have endured makes me weep. It is still true that all I can offer is my own experience. But my experience is very profound.
I would not wish my journey on anyone. But I would not willingly forgo the knowledge and depth of understanding I have gained because of that journey. Many are following me, painfully, haltingly, uncertainly; but following just the same. I have returned to stillness. So can you.
John Coleman
Lancefield, Victoria, Australia
May, 2024
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