I was born in 1943 to a working class family. My father was in the RAAF based in Darwin and I first saw him at about age two and a half. I have two older siblings, a sister Joan born in 1938, a brother Bill born in 1940, and a younger sister Elizabeth born in 1951.
My paternal grandmother developed Parkinson’s disease in her 50’s and died from its effects about fifteen years later. My father displayed mild Parkinsonian symptoms from around eighty years old until his death from a variety of age-related conditions at ninety three.
The first ten years of my life were marked by sexual, physical and emotional abuse from a number of people outside my immediate family, resulting in a significant but contentious head injury leaving the left side of my skull slightly flattened, constricting the left lateral ventricle and anterior horn to some degree. Surgically and neurologically this is considered to be "within normal limits". However, an Osteopath/Craniosacral therapist believes that this injury may well have been the trigger for degeneration in the cerebellum (similar to the "punch drunk" syndrome suffered by boxers).
I was an asthmatic from birth until about eight years old and suffered frequent "growing pains" with vague but distressing aches in the joints, mainly knees and hips. From nine, I had six annual episodes of rheumatic fever treated with rest, standard medication and six years of oral penicillin from ten to sixteen.
In my mid teens, I developed an essential tremor which is familial. However, there was also an intermittent tremor at rest which was not considered important. From about twenty (1963), I developed bilateral neck rigidity and pain in my shoulders, neck and lower back. This was thought to be associated with work, stress and car accidents. I sought treatment from doctors and chiropractors. Chiropractic gave short-term relief (a few days), but the symptoms, while moderate, were intractable. I was very stiff in my muscles and had been unable to touch my toes since early childhood. A noise in my head also became annoying, and is probably tinnitus, but I heard it well above my ears as if it was actually in my skull.
During my twenties and thirties, the rigidity and pain increased slowly as did the essential tremor and tremor at rest, especially under stress. I also developed frequent low-grade headaches and "joint cracking". I was under considerable stress, both in business and at home, and blamed this. I used chiropractic for symptomatic relief and, occasionally, used herbal medicine to relieve stress and improve my digestion. A small duodenal ulcer was treated herbally in 1971.
In my forties, the pain and stiffness became quite marked but, as there seemed little I could do about it, I learned to live with it. The low-grade headaches became more frequent and lasted longer - sometimes for weeks. My tremors grew a little worse, especially under stress. I was often very tired but worked very long hours at three jobs and caring for my family of my wife and two sons, so forced myself to keep going. I had a very optimistic view of life but was, at the same time, very unhappy with a disintegrating marriage and dissatisfaction with my work in marketing. I ran my own health food business for four years from 1979 to 1983. My elder son, Damian, developed leukaemia in 1980 and died at the end of 1983. I commenced naturopathic studies in 1980, deferred when Damian became ill, returned to study in 1983 but deferred again when he died.
In October 1989, my younger son, Sean, and I joined five other men to walk the Kakoda Trail in Papua New Guinea from Kakoda to Port Moresby. Most of the track is over 1500 metres above sea level. From 800 metres, I suffered symptoms of altitude sickness including palpitations, shortness of breath, dizziness, mild nausea, dreadful fatigue and loss of coordination. I was very disappointed as I thought I was healthy, if not fit. I kept going, of course, because there was no way off the track until an airstrip was reached. Sean and I stopped at Kagi after three days walk to await a plane. Sean was unwell and my condition was deteriorating. This was a terribly difficult walk but a wonderful experience in companionship, endurance and magnificent scenery, described in "Letters From Kakoda" (unpublished).
In retrospect, I can see that what I thought was simple altitude sickness was, in fact, a prelude to Parkinson’s disease. The symptoms were all latent Parkinson’s disease symptoms exacerbated by the reduction in oxygen available at altitude. After Kakoda, my marriage ended and, in early 1990, I was retrenched and unemployed for about four months. I commenced night-shift work late in 1990 and returned to naturopathic studies in November of that year. From late 1990 until mid 1993, I worked five night shifts per week and attended classes from 9am to 6pm three days per week. My pain and rigidity escalated and the headaches were almost constant. My tremors remained at about the same level although intermittent "pill rolling" became evident, but I considered this to be habitual rather than significant. I was extremely tired and attributed all my symptoms to this. I sometimes used herbs and flower essences to ease stress and emotional issues but thought I would "get better" when I finished study and could live more "normal" hours.
In 1993, I changed jobs to a day-shift position in charge of operating theatre technicians at Epworth hospital (about 60 - 70 hours per week) and commenced evening study at the Australian College of Natural Medicine.
Over the next eighteen months, my fatigue increased and walking became difficult. While I could walk at a reasonable pace, my stride shortened, gait widened, I found stairs very difficult to climb and my large toes elevated. Pain and rigidity in my neck and back increased. I started working part time as a masseur and had some "swap" massages with a friend that helped relieve the pain a little. Again, I attributed my symptoms to stress and overwork, thinking it would be "alright" when I finished study.
I ceased smoking on 26th April 1995 after 43 years (I began smoking at 9 years old after an unsuccessful suicide attempt). All my symptoms escalated very rapidly. Pain and rigidity became almost unbearable. Walking became very difficult with festination and frequent stumbles. My large toes became rigidly elevated and made holes in the uppers of my theatre shoes while my other toes began to curl under. I had brief periods of disorientation and dizziness. My vision deteriorated and coordination was poor. Dreadful fatigue made each task enormously difficult and it was terribly hard to concentrate on anything for more than a few minutes. I felt as if I was moving through chest high water all the time. Ascending gradients, like ramps, became difficult to negotiate and stairs almost impossible. Descending ramps or stairs was dangerous as my festinating walk tended to make me lose control and fall forward. My writing became less legible. A full list of symptoms is shown in ( Appendix 1 ) |
