This week is Parkinson’s Awareness Week. Parkinson’s UK are asking people to put themselves in the shoes of people with Parkinson’s to find out what life is like with the condition. Matt Eagles, 43, who was diagnosed with Parkinson’s when he was eight years old has written a guest blog post about his experience.
Parkinson’s Awareness Week launched yesterday, and to mark the occasion I wanted to share my own personal experiences on my journey so far both positive and negative but all very real indeed.
I have lived with young onset Parkinson’s since the age of eight, unusual I know but not unheard of and surprisingly more common than the general public might care to acknowledge. From an early age my headmaster at Primary school noticed I was restless and couldn’t keep still in school assembly. Was I a naughty child making mischief, or was there an underlying problem with this little boy who couldn’t stand still?
Naturally there was parental concern and many visits to hospital ultimately proved their hunch was correct. I was ten years old when I was given Sinemet – a drug commonly used to treat Parkinson’s – for the first time and it worked.
I am not sure why Parkinson’s chose me but I rather wish it hadn’t and now, aged 44, it has been a rocky road which has included suffering bouts of self- harm and depression as a result of alienation from friends at school who didn’t consider me cool enough to join them on holiday because I was, for want of a better word ‘a burden’. Even my Latin teacher called me ‘dead legs ‘!
That aside, I have had tremendous highs but only due to my resolute decision not to be typecast as less-able as the next man. I have tandem skydived from 10,000 feet and abseiled down Manchester Town Hall to raise fund for Parkinson’s UK – I was also an official photographer at the London 2012 Olympic Games.
There have also been lows – like being made redundant last week after ten years .
It is hard enough to get a job as it is without Parkinson’s tagging along too. Interestingly enough when I showed my CV to a friend who just so happens to be a Managing Director, he said: “Don’t mention you have Parkinson’s – your CV will be disregarded straightaway. That’s not just me talking off the record; I speak for hundreds of employers!” – blind prejudice or fact of life for thousands of people who live with this terrible condition?
Anyway as I now have one or two days on my hands I planned a day’s activities. Ten pin bowling with my fiancée and stepson sounded perfect. I had been a bit of dab-hand in my formative years and felt certain I could out strike my younger opponent who takes pleasure in beating me at every single electronic game available.
Game on. The child friendly side bars were up for my stepson who had gone before me and despite the fact I had never needed them before, I was eternally grateful as my ball headed for the gutter and was suddenly sprung back into play to knock all the pins down – a strike Baroness Thatcher couldn’t even have prevented or indeed have predicted.
That was as good as it got. We were asked to move lanes where the side bars were no longer available – my game fell apart. Every ball without exception headed for the gutter, I even ended up in a heap on the floor myself – as I got up , I avoided eye contact with everybody pretending everything was perfectly normal – after all lots of people fall over when they bowl, don’t they?
I didn’t even consider that my Parkinson’s was the culprit – I was listing to one side like a stricken cruise ship as I bowled and the more effort I used the quicker the ball disappeared, indeed on one occasion I surprised the group on the lane next door by sending a bowl crashing onto their lane – and no, I didn’t manage to knock any of their pins down either!
As my plan for ultimate bowling supremacy crumbled around me my stepson continued to improve. Strikes and spares were all accompanied with a victory wiggle and the obligatory ‘L’ shape made with thumb and forefinger, which I know very well means loser.
I sat with head bowed and didn’t even look up – the shame of getting whopped by a ten year old has no boundaries. I could have blamed my Parkinson’s for ambushing my plan, but in truth I took on the challenge with gusto. I was certain I was going to win.
My Parkinson’s may have left me off balance, but there is always next time when I will be older and wiser and hopefully not nearly as wobbly. Then again, there might not be a re-match just yet, I might be working – depending on who reads my CV!