Blog

The village shop used to sell basic needs for self-caterers; tinned veg, bin-bags and faded copies of Bunty on the news stand outside.


The chance of putting drops in the wrong orifice was high and I frequently misfired when shaky and in the ‘off’ state. Fortunately, my husband often came to the rescue.


I have been short-sighted since the age of ten when I got my first pair of regulation spectacles with pink plastic frames. At seventeen, I moved on to heavy- rimmed Nana Mouskouri-style specs and hid behind them and my curtain of long hair. I hated wearing specs and used them only at school. Outside, my social life was a blur; friends, buses and life in general passed me by.


I was alone in the house one Wednesday afternoon when I found myself frozen at the top of the top flight, unable to move.


When I first started this blog two years ago I was concerned about privacy and thought it was best to adopt a pseudonym. I chose Laura Lewis, my grandmother’s name. I had never met her because she died of appendicitis aged 33. Using her name was a form of respect for her short life.


It is said that PwP (people with Parkinson’s) share some common personality traits which existed long before we were diagnosed and intensify as the condition progresses. The common traits that I share are punctuality, industriousness, a passion for order and a dislike of coffee-drinking and smoking. They seem to be the virtues associated with a disciplined lifestyle, but these days I find it very difficult to maintain some of these standards.


After I was diagnosed with Parkinson’s disease in August 2000, I started keeping a diary where I recorded both the physical and psychological Parkinson’s symptoms. This diary was where I could express my feelings and fears which I hid from the rest of the world; it became an emotional outlet as well as an important quarterly record of disease progression.


During my first three years of living with Parkinson’s, I could eat what I fancied, but since starting medication nine years ago, I have had to limit my protein consumption because it can have the effect of reducing the benefits of my medication. A plate of fish and chips or even a cheese sandwich for lunch can make the afternoon dose ineffective and allow my Parkinson's symptoms to return in force.


We have just returned from a fortnight in France spending one week in a gîte in the Ardèche with our family and the rest of the time travelling there and back; around 2,000 miles in total. I am no sailor and was dreading the crossings between Portsmouth and Cherbourg but to my surprise, the weather was fine and the sea was calm. I enjoyed being up on deck in the fresh air and sunshine, watching the coastline approach. Both the outward and return ferries were busy with toddlers dashing recklessly round the decks pursued by weary parents who had been up for hours. We were glad to be free of such responsibilities.


This week has been a busy and tiring one with journeys, meetings and a conference. It is not surprising that I have been falling asleep at every opportunity; on the train, in the car and in public. One particularly tiring afternoon, I woke up just in time to avoid falling off my chair at a conference. I was not alone, and others were sleeping fitfully. I drifted off on several train journeys waking up with a start wondering if I had missed my station or whether the whole carriage had heard me snore. My Pilates class on Tuesday had some moments on concentrated activity when we stretched out our rigid muscles, but the moment we lay on our backs, I dozed off rudely missing the instructions.