AboUT NEIL

Until 2017 I would consider myself an ordinary kind of chap, I have a family and a job, outside of work my main focus was triathlons, training and competing was a big part of my life. But after the Vichy Ironman I found the training was starting to take over my life. Cutting down training hours I would have more time to spend with my partner Nicky, yet still enjoy the social elements of meeting friends and being outside training.

I can’t remember the exact date, but around April 2017 I set off from the small village of Broadway with my cycling buddies for a training ride. The weather that morning was perfect for hard, fast riding. My only memory is someone laughing aloud as we set off.

The next thing I remember was lying on the verge of a country lane, choking on blood as it dribbled down my face. Little did I know but my life was about to change forever. I was drifting in and out of consciousness as a helicopter ambulance was hovering above me – it landed in an adjacent field. A doctor and a couple of medics jumped out and ran over to me. 

I was then taken to the John Radcliff hospital.

The next day the doctors told me that I had a broken eye socket and jaw, which would be treated a couple of days later by securing the broken bones with titanium plates. I was also informed that I sustained a brain haemorrhage. On top of all that I had a broken wrist, crushed finger and broken bones in my right hand.

To this day I can’t remember how I came off my bike! my cycling friends said I hit a large pothole.

The recovery from the cycling accident in April 2017 was slow and tedious, lying in a hospital bed for 3 weeks. What shocked me was the amount of muscle loss I experienced I was so weak! When I first got home I could not even make a cup of tea or open the fridge door, both my hands and wrists were still in plaster. Over the weeks and months I slowly started to get better and as soon as I could I started to rebuild my strength, with help from Nicky who was immense throughout. Eventually my life started to return, I still had a number of issues with my hand and shoulder, and still do, but life still goes on.

Parkinson’s Diagnosis

Months before my accident I started to feel that certain tasks were taking me longer such as my hand writing, using a knife and fork and the odd twitch in my hand but I thought it was just down to getting older.

The night I will never forget took place several months after my accident – Nicky was away on business. I was sitting watching TV when out of nowhere my right arm jumped and broke into a continuous tremor that I’ve lived with ever since. At the time I thought it was a trapped nerve and after a good nights sleep it would pass; but it didn’t! After a few weeks I decided it was time to go and see my doctor, he was very nice and was of the view I was drinking too much coffee and diagnosed an essential hand tremor. So I reduced my 7 to 8 mugs down to just 2, but it didn’t make the slightest difference, my hand continued to tremor.

I also noted that my handwriting was becoming increasingly untidy and as before I was slower on my right side.

The hand tremor continued but deep down I knew something wasn’t right. I started to checkout Dr Google. My handwriting had worsened; I was having difficulty with smell, taste and balance. And every time I Googled these symptoms, Parkinson’s kept coming up. 

I asked my GP to refer me to the John Radcliff Hospital in Oxford who were world class when treating me after my bike accident. I saw the Professor of Neurology who carried out numerous tests, he then confirmed what I already knew. 

“I had Parkinson’s.”

My first response to his diagnosis was ‘can I still run’? He said ‘yes’ and went on to explain more about Parkinson’s and the positive effect that running and energetic exercise has with Parkinson’s. Although I knew I had Parkinson’s I was still in shock and it took me a few months to come to terms with it. At the same time my neurologist advised me I should consider giving up cycling, which I reluctantly did. So I started running again.

The Parkinson’s affect

I have deliberately made a point of not finding out how the many Parkinson’s symptoms can affect you because for me ignorance is bliss. The less I know then the chances of me beginning to imagine symptoms and worry myself are reduced. There are three main symptoms that do impact a lot of people with Parkinson’s, but there are over 40 others.

Essentially, Parkinson's develops when cells in the brain stop working properly and are lost over time. These brain cells produce a chemical called dopamine. Symptoms start to appear when the brain can’t make enough dopamine to control movement properly.

It is a degenerative disease and will get worse over time and there is currently no cure. My understanding is that a new generation of medication is not far off... but until then...

There is a side of Parkinson’s that’s very difficult or nigh on impossible to describe or explain, it’s a mental or emotional state that some might describe as depression or anxiety, but it’s more than that. 

A good friend of mine who is younger than me who has Parkinson’s said once that “the only people who truly understand Parkinson’s are people with Parkinson’s”.

To give you a flavour of how Parkinson’s impacts me on a daily basis:

  • I can’t write a simple note, or message in my granddaughters birthday card

  • I rarely get quality sleep

  • Carrying drinks in my right hand is a no, no

  • I have very limited sense of smell and taste

  • I’m constantly constipated I won’t go into too much detail

  • I am constantly trying to hide my hand tremor, for fear of what others might think

  • When I eat dry food like toast, cake or biscuits it sometimes is awkward to swallow

  • I sometimes find it hard to speak

  • I find it difficult putting a plastic lid on a take out coffee cup

  • My co-ordination can be difficult depending on how tired I am

  • Falling over is something I have to be very careful of especially when I’m running and tired

  • I become uneasy or panic when travelling on my own. For instance going into London or any large town on my own on the train I find scary

When you are diagnosed with Parkinson’s it changes you, some days you’re absolutely fine, but occasionally it gets you down.

I go through a phase of feeling sorry for myself, I feel why me? I’m not the same person anymore, I’m different, I’ve changed. I look at myself in the mirror and I see someone I don’t like. This strange person is dead-pan, miserable looking, menacing, expressionless. I have a vacant expression in my eyes. 

A sort of foreboding and depression lingers over you, tiredness grips you, the fear of what lies ahead is constantly in the back of your head. 

But I Still Can….Run

As Parkinson’s tightens its grip on me I become more stubborn and determined to keep control and not let it have an easy ride. I’m still the boss. And running is my main weapon to fight it. Every run is different, it depends on how I’m feeling mentally, physically, or how well I slept.

It’s worth noting that you don’t have to run marathons every time, sometimes a slow 4 or 5 miles is just as beneficial as a long run. It is by a country mile the most effective weapon I have to control how I deal with this disease and I intend to battle hard. Extreme or ultra running presents a myriad of issues for anyone, but add to that the symptoms of Parkinson’s then the challenge is an even tougher test. Running JOGLE was a challenge – L2B will be a bigger one.

MY HAND TREMOR

Running with a hand tremor is best described as a mild nuisance 99% of the time. But 1% of the time it really gets me down! On a practical level I’ve discovered that what worked for me is to try and get my hand tremor to shake in time with my running stride and get a rhythm going, which I surprisingly found easy to do. On long runs anything over 15 miles and the continuous shaking can sometimes set off a painful tendentious in my wrist. The pain is excruciating and makes running very painful. I’m lucky though, because it doesn’t last very long a weeks rest then I’m usually okay.

FALLING

My other Parkinson’s affect when running is falling over. It’s more of an issue when I’m running long distances and when fatigue has set in. Sometimes I just clip my foot against my other foot and over I go. This is mainly down to a lapse in concentration. The problem I have is that my natural instinct is to put my arm out to break my fall. My concern is that the impact might do some damage to my old break, but so far it hasn’t. Running off road, cross-country or when the terrain is forever changing are potential hazards, especially tree roots that grow over ground the slightest misjudgement, my foot only has to just clip the root and again over I go. Where some more agile runners can recover from a trip, with me there’s no chance once I’m off balance.

FADING LIGHT

My other worry is when day light starts to turn to night, when the fading light plays tricks with your eyes especially speed humps which are hard to see in normal light, let alone when the light is 50-50.

'“Without running I would loose one of my most potent weapons in my fight against Parkinson’s.”

As I go over and over in my head why do I do this, why do I do that, it’s occurred to me that I’ve talked about things that I can’t do anymore and that list will grow over time. But I can still run and have the ability to run long distances. So not all is lost. Being able to run long distances is good for my confidence. Extreme stuff like running from John O’Groats the most Northern tip of Scotland all the way to Lands End, the most Southern tip of England, all 948 miles of it; this is something that most normal folk wouldn’t want to run. And me a 64 year old man with Parkinson’s can. For me this makes me feel positive about me.