Blog

Geography was always my favourite subject at school because you could sit and chat in class while colouring in the colonies on a map. Also, it was easy to get full marks if you knew your stuff; capitals, longest rivers and the number of sheep in New South Wales. I spent hours with my nose in the atlas and my head in the clouds and later on I discovered that it had great scope. Geography was the subject for me, and I decided to take it at university and afterwards went on to teach the subject.


Music has always been important to me and I started recorder lessons at the age of eight with mother Mary Magdalene, a nun at my convent school. I then moved on to the violin and scraped my way through several exams and made it to the back row of the second fiddles in the local youth orchestra. However, my real passion was always singing. I enjoyed singing in the school choir, but the lack of boys was a distinct disadvantage and at the age of 15 I had to suffer the indignity of being the leading boy in Gilbert and Sullivan’s Trial by Jury.


Living with Parkinson's is a challenge, but it's never dull. Each day has its ups and downs; ‘on’ periods of intense activity when my medication is working well interspersed with ‘offs‘ when I have to wait impatiently for the next dose to kick in. The end-of-dose ‘wearing off’ has become a familiar daily event. It creeps over me like a vice, getting a grip on my neck and working its way round my limbs, cramping the muscles painfully. I have good days when I am mostly switched ‘on’ and bad days when my ‘offs’ are more prolonged or intense.


It was a shock being diagnosed with Parkinson’s disease (PD) at the young age of 47. In those early days, I was anxious to know what to expect and I spent hours scouring the Internet for symptoms and treatments. It was full of bewildering terms I did not understand like dyskinesia and others I dreaded like dribbling. Nowhere did the websites tell me that it was going to be easy. There were many uncertainties: how would PD progress?; what it was like living with PD?; and how long would I be able to work?


I have been a regular bus user since giving up driving four years ago when I fell asleep at the wheel of my car and ended up in a hedge. Daytime somnolence and night-time insomnia are symptoms of Parkinson’s Disease (PD) and incompatible with safe driving. Having surrendered my licence, I received the compensation of a free bus pass. Living near the centre of a large town, I can take full advantage its efficient bus network. A bus pass is one of the few perks of having PD.


We liked “Mr Shaky”, an elderly man who shuffled into to our classroom every Friday afternoon to collect money and stick stamps in our National Savings books. He had a crooked posture, his voice was croaky and we couldn’t take our eyes off his unsteady hands. Sticking the pretty green stamps of Princess Anne on the right page and in the right spot was hit-and-miss for him. At the age of 5, this was probably my first encounter with Parkinson’s disease (PD). Little did I know that it would become my unwelcome companion in future years.


While we were admiring the condition of these medieval battle-dresses, it occurred to me how wearing a coat of armour must be hard work and similar to my daily experiences when I am “off”. I explained that walking while being “off” (or parky) felt like stumbling through tar on the deck of a cross-channel ferry in a force nine gale wearing a coat of armour. He found that staggering. “Wearing off” is not entirely predictable, but usually occurs between three and four hours after taking medication. I have a 20-minute warning then gradually the symptoms of Parkinson's disease (PD) creep over me like a vice slowly gripping my shoulders and then working their way down my back.


In fact, when meeting friends who enquire how I am, my answer is always "I'm OK thanks, and how are you?" There is little point in complaining about symptoms – bradykinesia, cog-wheeling and dystonia, because they need explanation and all they wanted to know is that I am OK. Besides, nowadays, I find many of my contemporaries have their own health problems some of which are much more serious than mine.


This back-to-nature holiday proved to be a great success and helped to rebuild my self-confidence. It was morale boosting to be outdoors and to take a few calculated risks. This experience made me realise that I can still be a bit daring even with Parkinson's disease.


When I first developed PD, I was cynical about the value of exercise and preferred to spend my time looking up symptoms on the computer. Before long, I realised that my efforts to conserve my precious dopamine were in fact having the opposite effect; I became progressively stiffer and experienced persistent back-pain