Sunday 6th August 1995 I was woken by the telephone and picked it up but was unable to speak coherently. My mind knew what I wanted to say, but the words came out badly stammered and/or completely garbled. My other symptoms (pain, tremor, rigidity) were very bad and I thought I may have suffered several small strokes, although there was no paralysis evident. I managed to get through the day, then went to work on Monday as Epworth Hospital theatres were very busy and I felt I would let the team down if I took sick leave.
Tuesday 8th August 1995 (my day off) I visited Julie Streckfuss, Osteopath and Craniosacral Therapist (CST), as she had been recommended for my neck pain. She refused to treat me until she saw a CT scan which I obtained the next day.
Tuesday 15th August 1995 I attended my Naturopath who referred me to a Neurologist after he noted a ptosis (drooping eyelid) on the right side. I was unable to obtain an appointment until six weeks hence.
Wednesday 16th August 1995 After a few hours at work, I reached a state of virtual collapse. I was weak, trembling, sweating, incoherent, confused and could walk only by supporting myself against a wall or other solid object. My condition was noticed by a senior nurse who immediately arranged an appointment with the Neurologist my Naturopath had referred me to later that day, and a letter of referral from a doctor at the hospital who considered that I displayed the symptoms of Parkinson's disease. The Neurologist gave me a very brief examination, took a cursory history and ordered an MRI scan.
Monday 21st August 1995 I again saw the Neurologist with an MRI scan conducted the day before. The Neurologist diagnosed stress and observed no "hard neurological abnormalities". This was not surprising as he had not yet given me a physical examination other than watching me walk a few steps in his office. He prescribed two weeks sick leave and 25 mg Doxepin nightly #. I did not take the prescribed drugs, but commenced Tressos B intake and Craniosacral Therapy as well as two weeks sick leave, and continued my normal vitamin intake (Vit C, Vit E and a multi vitamin and mineral supplement). Of course, some of my symptoms improved with the rest and CST, but I knew that there was something very wrong with me, and was desperate to get to the bottom of it.
Monday 4th September 1995 I saw the Neurologist again. He thought I was a great deal better, focusing on my improved speech. He was pleased that I was receiving counselling and placed no importance on the other symptoms I tried to tell him about as he was in a hurry. In fact, he ignored my stammering attempts to explain my physical symptoms while he wrote a certificate for another two weeks sick leave, which was all that my employer owed me.
Wednesday 20th September 1995 I returned to work although I was very unwell with most symptoms still apparent - I had no more sick leave left and needed money to live. I continued with the Tressos B, vitamins and CST fortnightly. I was able to survive each day and do my job sufficiently well to appease the management. My colleagues were very supportive, making sure I worked in an "easy" theatre and had help for heavy lifts. I tried to reduce my hours of work where possible. A friend also gave me massages on a fortnightly basis. While I appeared to be getting no worse, I was not getting better and felt the need for further investigation.
Wednesday 18th October 1995 I saw a Neurosurgeon, to ask his opinion of the MRI scan. He felt that my skull and brain asymmetry was "within normal limits" and suggested that my job was stressing me badly. He considered that I was in an early stage of Parkinson’s disease, but that was not the whole answer. He said he thought I was a "pretty together sort of a bloke" and should continue seeking the sort of therapies that gave me benefit (CST and Vitamin supplements at that time) and to "hang in there". While this Neurosurgeon is a caring and humane person, like the Neurologist, he took no note of my childhood, background or the long prodromal period of symptom development. On the other hand, I was very ill and still convinced that there was more than stress involved. Like the Neurosurgeon, I was convinced that Parkinson’s disease was probably the major problem, but it was either very severe or there were complicating factors.
Tuesday 24th October 1995 I commenced a fascinating journey with Peter Clarke, Flower Essence Counsellor. I thought that Flower Essences combined with discussing the issues raised would be of more benefit to my progress than symptomatic stress relief. Over a two-year period, Peter led me on a journey into my darkest and brightest being. I have discussed this process more fully on the Flower Essences page.
Monday 18th December 1995 I visited Marg Wood, Homeopath. Although I did not know it at the time, this was the real beginning of my journey back to health. It is difficult to isolate the effect of homeopathics on my neurological symptoms from their effect on emotional and spiritual issues, and from the benefits of other therapies. I have tried to analyse my progress under Marg’s guidance on the Homeopathics page. Marg suggested I should be reassessed by the Neurologist.
Monday 5th February 1996 I saw the Neurologist. He thought I looked well and said my stammer was much better. I shouted at him in frustration, forcing him to take notice of my long-standing symptoms and examine me. While his examination was poor compared with those I have experienced outside the medical profession, it was enough to convince him that I had something seriously wrong with me. He said that he believed that I had Parkinson’s disease and was developing Multi System Atrophy. He thought I required some "Parkinson’s disease treatment" but wanted a second opinion first. There was still no discussion of prodromal period or background. He said he ordered a screen for Wilson’s disease that was negative, however no blood sample was taken so I am unsure about the validity of this screen. His most encouraging statement was, "When you get worse, we’ll give you some drugs which will keep you comfortable for as long as possible". My experience with the Neurologist was one of the most negative, humiliating and disempowering experiences of my life. I looked for concern, expert assessment, compassion and empathy. Instead I received off-hand treatment, cursory examination and a complete lack of care or understanding of my feelings, life-style or environment.
# DOXEPIN - Doxepin hydrochloride is a drug prescribed for endogenous depression (in my case, a rather doubtful diagnosis). Adverse side effects of Doxepin include drowsiness, confusion, disorientation, ataxia, dizziness, tinnitus, headache, fatigue and weakness - all symptoms I currently displayed. Patients taking Doxepin should be warned against driving a car . This was not done in my case and, anyway, my car was my only feasible means of transport at the time. I decided that Doxepin was not an appropriate treatment for me at that time. |
