The Early days
I do consider myself to be very lucky though, I cannot remember NOT having Parkinson’s so everything I have managed to achieve, I have done so despite it, I have nothing to compare my life with, it has been an ever present in my life. The fact is I didn’t choose Parkinson’s, rather it chose me.
Ideally, I wanted to be the next Jacques Yves Cousteau or a modern-day Steve Backshall and sail the seas looking after marine life, but circumstances conspired against me. It’s a double blow really as I’m a lifelong West Ham United fan and that hasn’t been easy either.
Parkinson’s disease can, and indeed does, control every aspect of my daily life - from rolling off the bed onto the floor, shuffling to the bedroom door on my hands and knees then hauling myself to my feet by the door handle and trying to keep my balance whilst holding onto the grab rail fixed on the left hand wall just outside our bedroom (I plunge forward with outstretched right palm trying not to bang into the airing cupboard door, the structure of which has now gone spongy after continuous daily impacts from my hand). I stop and gather myself together in the bathroom doorway, arching my back so I'm not hunched over. I then eye up the grab rail next to the toilet. When I feel steady enough, I take a step forward and stop to regain my balance. It seems to take an age, and I am busting to go for a wee . I then lunge forward grabbing the rail and I'm nearly there. I lift the toilet seat and pirouette around and sink in a moment of sheer relief onto the seat. The bathroom is less than five feet away from our bedroom, yet a task as simple as going to the toilet can take five minutes which, when you have an urgency to pee, (very common in PWPs), can seem like a lifetime!
Getting dressed can be fun too! I often fall off the bed whilst trying to put on my undies one leg in and one leg out... not very dignified but rather amusing to watch according to my wife and the journey continues until I go to bed at night.
Each room in the house, each transition between rooms is fraught with risk. In the bathroom I regularly cut myself shaving, wriggle around so much I break the toilet set, and experience writhing dyskinesia whilst having a shower which to an uninitiated might look like I’m practicing for a stint on Strictly Come Dancing.
The kitchen is full of danger. I break crockery whilst washing up and drying dishes. I cannot move pans on the gas hob for fear of burning myself and sending the contents of the pan all over the floor. I cannot use a kettle; we now have a water boiler. When making a cup of coffee I spill the coffee, then the milk, then once the cup is full, I often spill that too, forcing me to start all over again!
It's super difficult to answer the landline without cutting the other person off with my ear. Typing on a keyboard, holding a book, taking selfies for social media posts can all at times be beyond me, even trying to do up shoelaces is a nightmare and trying to eat sometimes just becomes impossible as I cannot get the food onto the cutlery to put it in my mouth.
These are all everyday tasks that people take for granted and it's never ending.
Did I choose to have Parkinson’s. Is it my fault? (well possibly, yes having consumed various hazardous chemicals as a toddler including brake fluid ,emulsion paint and phosphorus from a box of matches, all of which are highly toxic and could have triggered the gene mutation I was already carrying …. )
Does it help to get angry, upset and grumpy with others about every little mishap or fall?
The answer of course is NO!
How it all Began
My earliest memories of what I was later to learn was Parkinson’s was my loss of balance. I kept falling backwards in my school assembly, information which my headmaster passed onto my mum who also worked in the school. I used to stand on one leg while my mother cut my toenails on the basin of the toilet and one day I couldn’t balance, and she kept shouting at me and slapping me in frustration. I started crying, not because it hurt but because I didn’t know why I couldn’t stand still.
I had never considered my speech to be an issue although to my mum, who already had me down even at this early stage in my school career as a high-flying lawyer, thought my Northern accent most definitely was! I had to enunciate properly and as a result I was signed up to have speech and drama lessons to rid me of this Northern Curse. I was to learn and recite poetry by heart and then entered Speech and Drama Festivals all over the Northwest of England. As I was unable to stand and recite the poems I sat down on a chair in front of an expectant audience and then waited as the judges passed their verdict – I guess it was like Britain’s Got Talent but without Simon Cowell and the phone vote. In retrospect all this vocal training has helped me tremendously with speech issues I was to encounter later down the line. When I wasn’t learning my poems I was usually in hospital, as the medical staff struggled to identify the strange symptoms I was exhibiting. Monday to Friday I spent on the ward being tested and assessed, and at the weekends I was allowed home.
Initially my balance problems and buckling limbs indicated to my local GP that perhaps it was arthritis in my knees, but scans proved inconclusive and with few other options available I was referred to Booth Hall Children’s Hospital. I became almost a healthcare ‘tourist’ …spending all my school holidays in an unfamiliar place where I didn’t understand what on earth was going on, having procedures I never knew I needed. A brain tumour was suspected too but an MRI scan at the much vaunted state of the art MRI scanner in Salford, one of only two in the country at the time , proved otherwise .
One of the doctors suggested to my parents that he would try me on a a drug proven to help elderly patients cope with the on-set of Parkinson’s Disease. The medication I was prescribed was L-dopa, only introduced some ten years earlier in 1967 by George Cotzias
This was cutting edge prescribing and a real risky decision, but if it worked could be life changing and re-write the medical textbooks. If it didn’t work however, the repercussions could be enormous. There was a financial sweetener though to ensure adherence – a shiny 50p which made my eyes light up! Imagine paying patients to take meds these days.
It worked to an extent, but as I entered my teens, I was referred away from the safety net that I had got used to at Booth Hall to a hospital in London that specialised in Movement Disorders. Under the specialist care of Professor David Marsden and subsequently Professor Niall Quinn, I became the patient of choice in teaching seminars. I knew the drill; I knew the questions they were going to ask, and I knew the tests they would perform. I felt quite smug and wore a huge grin during these seminars, happy in the knowledge that I knew more than them about my condition, that I was the expert.
Sporting Prowess
I used to love playing and watching sport, the fact that I wasn’t very good at any of them didn’t really worry me at the time, until my Parkinson’s really had an obvious effect on my balance and running ability.
Growing up we used to play football in the street, using grids as goalposts or, if we were lucky, a set of rather large garage doors painted sky blue which celebrated every goal with a bang as the wet leather casey ball smashed against it - often the signal for an angry parent to lean out of the window and tell us to ‘clear-off!’
We also used to play games in a local farmer’s field using jumpers as goal posts. The biggest game was always against the Crescent lads, our local rivals and they were always close-run games with plenty of needle. Crescent used to have a big lad playing upfront nicknamed ‘Killer Dale ‘who was 6’4. All the younger lads were afraid of him as he had a fearsome reputation but all the stories we’d heard about him proved in later years to be totally false. He's a nice guy called Mark whom I’m still friends with to this day on Facebook.
I guess the real turning point was in junior school when I played football. I remember getting upset after being laughed at by my sports teacher Mr Bevan as I made spectacular efforts to save the ball, only to discover that I was diving after the ball had gone in the net. Needless to say, I was always last to be picked.
Bizarrely despite my lack of balance, speed and required skill set I loved playing football and regularly visited my friend Andrew Hammond from the Crescent who helped train me in his own ‘goalkeeping academy’. He even made cardboard proficiency badges when he felt I had ‘progressed’ to the next level. I used to return home with my tracksuit bottoms covered in mud proudly wearing my badges which were hand drawn and covered in sellotape.
I played in goal for my cub side too but couldn’t kick the ball out of my hands out of the penalty area and the opposing strikers thought all their Christmases had come at once as they were continually presented chances on a plate. Most of those early games we lost by double figure scores, and I was soon dropped from the team as a goalkeeper.
I also played mini rugby for Macclesfield and my dad and uncle regularly attended games, but my rugby career was also cut short after I suddenly lost the ability to stand up and chase after the opposition players.
Around this time in the summer holidays I was spending most of my time in hospital and they were asking for people to enter the hospital's summer sports day. I was rubbish at running or rather sprinting so those events were a definite no go but bizarrely I found I could run whilst skipping with a skipping rope. Sadly, the only skipping race was for girls and I wasn’t allowed to enter.
I have never been one to boast about my sporting prowess, because quite honestly I had none but I just loved playing and the only reason that ever stopped me was when I couldn’t physically stand up which used to frustrate me tremendously.
Secondary School
My school days I now remember fondly but having to miss many lunchtimes to go for physiotherapy and try and stand on one leg for as long as I could wasn’t my idea of fun.
Several of my teachers were 'old school' and as such, pupils were like maggots and put down at every opportunity. My Latin teacher frequently called me 'Dead legs'. 'Sparrow Legs' was another favourite. Once I remember being hauled into a classroom after arriving late and being told to lie on the floor for a whole maths lesson. The fact was I could have hauled my way to a desk but that wasn’t an option.
As I moved into my teenage years my body began to develop to withstand the everyday rigours and physical demands of the disease . In many respects I felt very lucky I could grow strong with this degenerative disease while for the vast majority of patients the opposite was true. I used to gain street cred by arm wrestling members of the rugby team... and winning, much to their displeasure … one of the few guys I never managed to beat went on to play for England and became Director of Stade Francais in Paris
Medication – the good, the bad and the ugly
I have tried many different meds on my journey with a variety of success - I now reckon I have taken over 220k units of medication in my journey so far – anything from tablets that made me feel sick all the time to an Intravenous Apomorphine Pump. I had to set the pump up each morning, injecting myself with a tiny cannula and taping it to my tummy, not particularly practical in hot weather, when not only did the dressing fall off when I sweated but then the needle fell out. After 18 months or so I had to come off it as it caused embarrassing Viagra like symptoms with little or no notice and extreme startle. When I heard a phone ring I usually ended up throwing my drink or food all over myself. Clearly not ideal in a telesales environment.
The whole reason for taking medications for Parkinson’s is to hopefully restore, as far as possible, the chemical imbalance within the brain that causes loss of function in mood and movement throughout the body. This is not without risk and despite what the published clinical data appears to suggest, the number of people who suffer life-changing side effects, such as Impulse Control Disorders as a result of taking Parkinson’s medications in reality is far higher. Personal shame is sadly a great sensor of the truth. Compulsive gambling , hyper-sexuality, compulsive shopping are just some of the impulse control disorders common amongst PWPs and they can have huge ramifications for not only for themselves but their loved ones too. Sadly you cannot throw a stone into water without ripples.
I have had my own mental health issues with compulsive gambling,* which began as a result of not coping with the reality of the termination of my daughters life and nearly cost me my marriage before it had begun in 2013. It was directly attributable to the Parkinson’s meds I was taking at the time. I have self-harmed, blackening my own eye by punching myself repeatedly, I have also cut myself with my swiss army knife, so uncertain what my future would bring.
Gambling and self-harm are two things I can happily report I have left behind but one rather curious compulsion remains. Actually two. First I still support the Hammers despite everything and secondly I still have a strange compulsion to buy books, put them on the shelf with good intention and then not read them. Apparently this isn’t as uncommon as you may think …. And it even has a name TSUNDOKU - the art of buying books and not reading them .
Medication it appears may also be responsible for unleashing a latent creativity in PWPs and I am currently involved in co-designing a virtual experience to explain this phenomenon along with artists and technologists from the University of Plymouth and the European Parkinson's Disease Association .
Deep Brain Stimulation
I had DBS surgery in September 2006 . Essentially this means having a brain pacemaker fitted. The operation is done in two parts. First, two holes are drilled through your skull and electrodes inserted deep into your brain. This is usually done under local anaesthetic so the surgeons can identify if they placed them correctly, but I fainted so had it done under a general.
Secondly they implant a pulse generator in your chest to regulate the flow of electricity into targeted areas of the brain. The electrodes and the pulse generator are connected together with a wire which is tunnelled under the skin from the skull to the chest via the neck. The whole procedure involves mm precision otherwise the consequences don’t bear thinking about.
I was in hospital for three days shy of three weeks back in 2006. Nowadays you can be in and out in a couple of days! The operation was a success and its effects were life-changing. I was able to get up in the middle of the night and go to the bathroom without crawling on the floor and weeing in a pot. It gave me my dignity back! I was able to eat without being unable to move 30 mins later.
Photographing at the London 2012 Olympics and Getting Married
The honest truth is I never thought I would never ever get to do either of these things but such was the success of my DBS surgery, life gave me the opportunities to do both, and I have never looked back !
I took up photographing football shortly after returning from a magical safari trip to Botswana 6 months after my surgery in 2007. All my weekends were taken up with attending football matches, taking photographs and writing match reports - sometimes for up to 22 matches . Enabling me to attend was my then girlfriend Viv who used to ferry me around to all the games with her 7 year old son. The reward for Viv was usually a Sunday lunch at the local pub whilst I collected the match reports. Not much considering her personal sacrifice and that she didn’t even like watching football !
In early 2011 in recognition of my reporting exploits I was invited by an old school friend to apply to the International Olympic Committee to be a football photographer for ESPN SoccerNet. To my astonishment I was accepted and had the most amazing time following the mens and women's Team GB around the country photographing at Old Trafford , Wembley and the Millennium Stadium in Cardiff. I also managed to photograph the final in which Mexico beat a star studded Brazil side 2-1!
Fortunately Viv and her son stuck by me and on the 19th April 2014 I married her! It was and still is the happiest day of my life! I genuinely never thought anyone would want to marry ME as I had Parkinson’s for so long and was unsure how my future would unfold . Over 8 ½ years later we are stronger than ever.
*For free, confidential help and support to anyone who's worried about their - or someone else's gambling contact www.gambleaware.org.
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