By Laura Lewis November 7, 2011
One Saturday in the summer, my husband and I visited a museum in London where there was a range of impressive coats of armour. 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. For me, the most exasperating aspect of “wearing off” is being unable to manipulate things; I cannot write, operate my laptop keyboard or manage the simplest tasks like buttoning blouses or cleaning my teeth. It also affects my voice which becomes quieter and my speech less articulate. However, “wearing off” is not inevitable and I can avoid these symptoms or at least minimise them by keeping a close eye on the clock and making sure that my medication and meals are on time.
I recover once the next dose of medication starts to take effect and it is like a great weight being lifted or the removal of my imaginary coat of armour. I have to make the most of the next few hours when I am full of energy and enthusiasm. I dash around in a frenzy of activity catching up on jobs I’ve left undone or half-finished – housework, exercise, writing e-mails and letters.
Living with PD involves making the most of my time, not only on a daily basis but also in the long-term. During the first few years after diagnosis I was full of resentment and anxiety and I hid myself away. However, in time I adjusted to living with this condition and since my retirement five years ago I have felt much more positive. I have now entered a period when my condition responds well to medication and I can fulfil some of my ambitions.
I call these years my “”window of opportunity””. This is an indefinite time when I am still relatively well and it is my chance to pass on my experience to other people who have been recently diagnosed. To this end I set up a local support group in 2007 for those with young onset Parkinson’s. It brings together people of all different walks of life, but all sharing the same condition. The group has flourished and now has 33 members and I derive a great deal of satisfaction from that.
I have also had the opportunity to speak about my experiences of living with PD both on national and local radio. In this way, I have raised awareness and I hope to represent those whose illness prevents them from speaking out.
My other projects during this window of opportunity have been to publish three geography books. Each has taken over a year to write, has involved much research and required me to use cartographic skills too. Writing about such diverse topics as tsunamis in Japan and tsetse flies in Uganda has diverted my attention away from Parkinson’s, which might become overwhelming at times. Book-writing was an ambition I had years ago, but would never have achieved had I had continued to teach full-time.
Living with Parkinson’s disease is a constant challenge, but there are rewards too. I think it would be true to say that I now regard Parkinson’s as an opportunity rather than an obstacle.