Sunday, 16 January 2011

Taming the Parkinson's Beast

My intention when I started this blog in the wee small hours was to delve in to what life was like for me as a “Parkie” chic – someone at the prime of their middle-aged life with a neuro-degenerative condition. But, when I saw where it was taking me, I decided “Nah – I sound like a whinging pom!” That said, I have decided to include the first paragraph......

At the time of writing this, I am really tucked up in my bed far off in the land of nod - I wish! But the fact is, it is actually 5:35 on Saturday morning, my feet are turning blue from the cold, and I cannot sleep. I've just looked down at my right hand and noticed I have left finger marks on my leg where the “Parkie-death-grip” has left its mark. I had the unfortunate experience, about a year ago, where I was on a course at my employers training college in Solihull, and went to breakfast in the morning with finger marks on my right cheek. Yes, the Parkie-death-grip had left its mark whilst I was asleep on my face and no amount of make-up could cover it up. Much hilarity at the breakfast table, and it left its mark until lunch time. When the Parkie-death-grip occurs, which these days is more often than not, my right hand cramps and it is really painful – I jest not! So as you have by now gathered, Parkinson's has gone down my right side lucky me I'm left handed. But as I type this (one handed - I used to be a record breaking100% accurate blind touch typist in my youth) I've noticed that I also have pain in my left shoulder, which is one of my earlier non-motor symptoms on my right. Does this mean the disease is getting its tenacious claws in to me and my precious body and starting its inevitable course down my left side? Who knows, but my brain is screaming "No, not yet. I'm not ready!" It will be a question I have for my wonderful neurologist, who I irreverently refer to as "Dr T", when I pay my twice yearly pilgrimage to see him on the 24th of this month. Don't get me wrong here, my irreverence is not due to lack of faith (or sleep…..). It is more that I don't want to publicise who my specialist is. I have every faith in Dr T, and have absolutely no desire to change to another neurologist at this moment in time. Not only does he know what he’s talking about, he listens carefully  to what I say, discusses my options, and treats me as an intelligent human being. He is also very kind, and as for bedside manner – impeccable! Having absolute faith in ones neurologist is, in my opinion as a relative new kid on the block, top of my medical-care list and I have great expectations that Dr T will continue to look after me for many years to come. 

And this is where my whinge ends and I’m changing tack somewhat. Over 24 hours have passed since I started this blog and yesterday I decided, on a whim, to take my children to see the latest kids’ movie, Gullivers Travels, showing at a cinema in Swindon. I know I read this classic tale many, many moons ago, and whilst I can remember the plot, vaguely, I can’t remember any of the semantics. The story itself has been given a face lift, and brought in to the 21st Century.

Our unwitting hero, Gulliver, has an iPhone, works in a high rise office block, and is madly in love with his female boss. Gulliver is an unlikely hero, living in a world of his own at times, and I must admit I found his approach to life somewhat irritating at the start. But what has remained the same in this remake of the classic tale, if memory serves me right, is the little people, the Lilliputians. The Lilliputians are only 6 inches tall, but they are brave, resourceful, determined, work together as a team and are charmingly old-fashioned. And as for the special effects – incredible! The film was hilarious, but on a serious note it brought it home to me that we, meaning you, me and anybody who’s life has been touched by Parkinson’s, are the Little People and Parkinson’s the giant. But just as the Lilliputians beat their demons, we can, and we will, beat this degenerative condition. But we can only do it by working together. At the moment, two people stick out in my mind who are actively pursuing the Holy Grail – the holy grail being the Cure to Parkinson’s (or, at the very least, finding the brakes to slow it down). Those two people are Tom Isaacs and Bryn Williams. They, together with the support from their own circle of friends, families and supporters, are giants in the Parkinson’s world and are forging the path ahead for all of us. But what Tom and Bryn need from us is our support. It is only by pulling together and working as a team, just as the Lilliputians did, that we can tame the “beast” that is known as Parkinson’s. 

It concerns me when I come across a PwP who has buried their head in the sand. To all of you out there in the Parkinson’s world – don’t bury your head in the sand – instead work with Tom and Bryn. We all need to look the Parkinson’s beast right in the eye and confront it – just as Gulliver did when he was confronted by a seemingly all powerful creature which threatened the way of life of the Lilliputians. In the film, Gulliver overcame his own personal shortcomings and fear. Whilst it is beneficial to accept Parkinson’s before it can be confronted it is also really important to do everything in your power to stay mobile, stay sane, overcome your fear and stay in control. In short, we can all become a Gulliver – a kind of antihero.

And now – I’m going back to Swindon to return the wellie-boots I had bought Tim a couple of weeks ago, they don’t fit his feet, which was my original reason why I went to Swindon yesterday. Instead, I managed to leave the wellie-boots at home and only realised when we had got to our destination! This time, I shall make sure I have also turned off all the gas rings on the cooker before leaving home. I shall ensure I do not leave one of them on all day, which is what I did yesterday.

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