Parkinson’s isn’t the end
Diagnosed with Parkinson’s at 36, I thought my life was over. But now I know it was just the start of a new chapter…
Exclusive | 3 min read
The hospital corridor was plain, its decor as tired as it was dull. As I waited on the uncomfortable plastic chairs, all I could think was how the lights overhead were too bright for the time of day. I’d been waiting anxiously for 20 minutes to see a consultant and my nerves were frayed.
A month earlier, I’d been at work when my little finger had shaken. Its movement would have been imperceptible to my colleagues, but to me its twitch was utterly disturbing. I stared at my hand as it wiggled. Then, as quickly as it had started, the movement stopped.
I convinced myself that I was overdoing it at the gym. It wasn’t an impossibility. I’m keen on sports - a lot of sports. It’s my obsession.
But the twitch reappeared with increasing regularity. In June 2008, I faced down a tidal wave of fear as I stepped into a neurologist’s office to hear the results of scans and tests. I don’t remember much about the moment he said, ‘you have Parkinson’s disease,’ other than the overwhelming desire to say, ‘fuck off.’
So I said it.
My new reality
He was unfazed, continuing his explanations of the journey through this degenerative neurological disorder that lay ahead of me. But his words were drowned out by the Parkinson’s - unyielding and overwhelming in its frightening presence. All I absorbed was that there was no cure and treatments would only mask my symptoms - which would increase over time.
I was only 36 years old. A husband, a father, a lawyer, a marathon runner. I was supposed to be in my prime. How was this happening to me?
In that dull beige office, my world fell apart. I returned home in a haze of shock and grief. Despite everything I had, life suddenly felt meaningless. My wife tried to help me rally by saying we will get through this together. But I wouldn’t hear any of it.
My world had gone completely dark. I was devoid of hope and my diagnosis weighed on me from the moment I woke up to the moment I fell asleep. My twitching finger a constant physical reminder of the battle I couldn’t fight and wouldn’t win.
The condition develops when cells that produce dopamine in the brain stop working and are lost over time. Symptoms such as tremors, stiffness and slow movement appear when the brain can’t make enough dopamine to control movement properly.
Like others who are diagnosed with Parkinson’s, I was often scared, wondering what would happen to my body. I worried about the medications on offer and how I was supposed to deal with pain. My questions were endless: how do you cope with one day not being able to brush your teeth properly, cook independently or have sex?
Rallying myself
After a few months of anger and despair, I realised that I couldn’t wallow. I had to help myself. I focused on my work as a lawyer, and ploughed my energy into the athletic events I’d set my sights on before my diagnosis.
I continued training for the Marathon des Sables, a 150-mile race across the Sahara desert. It’s legendary, as far as ultra-races go, and known as the toughest footrace on earth. Almost a year after my diagnosis, I arrived in southern Morocco to take part in this epic adventure.
It was an exceptional challenge, not only for the fact that the biggest storm in 12 years ravaged Southern Morocco, washing away bridges, roads, trucks and the bivouacs – our temporary camp – but also because I became lost somewhere in the 9.7 million square miles of desert with only a litre and a half of water and all the dried food I could eat.
Luckily, I was found by a Berber tribesman who led me back to the course and saved my life. The joy of this realisation was brief as it became clear I was suffering from viral pericarditis, a serious infection of the sack surrounding the heart.
It had swollen so much that it was squeezing my heart. Unbeknownst to me, running with a 14kg backpack for the best part of the last 72 hours had been a gamble with death. I was taken out of the race.
Unexpected opportunities
But adversity has a habit of breeding opportunity. Several things came out of my Saharan adventure, which curbed my disappointment in not finishing.
The first was raising £1500 for Parkinson’s UK, a completely worthy charity that needs our support. The second was a cup of tea with a friend who asked, ‘So what are you going to do now?’
This led me to the 10MillionMetres challenge (running, hiking, cycling, climbing and rowing 10,000km) and filled my life with adventures over deserts, mountains and jungles across almost every continent.
I ran from London to Rome via Brussels and Paris (1457 miles) in 30 days. I became the first person to cross America - 3256 miles in 35 days - using four different disciplines (I cycled, ran, climbed and rowed). I also ran 200km of the Amazon Jungle, and these are just to name a few.
My aim was to raise £1million and I’ve so far raised £80,000 in the UK, and in excess of $530,000 worldwide. In continuing the activities and challenges I’ve always loved, my outlook on life with Parkinson’s began to change.
A new chapter
It made me realise this incurable, chronic neurodegenerative disease is not the end. That diagnosis is merely the beginning of a new chapter. I continue taking on physical challenges to hopefully slow the progression of my disease, staying as fit and strong as possible. I’m lucky that I can.
But it’s important to say this doesn’t convey the total reality of living with Parkinson’s. There are good days, of course, but bad ones too.
Some days, I walk like a robot or I lose my voice. These things make my world feel intrinsically smaller. It affects my confidence to be a part of society because I don’t want the world to see my symptoms. I am not alone in feeling like this, and have spoken to many others with Parkinson’s who have experienced this in their own way.
For me, stress is a terrible aggravator and when I was made redundant, I struggled at job interviews. My hand would slap around and interviewers thought I was drunk, or on drugs. I’d make a joke of it, telling them, ‘It’s Parkinson’s, have you noticed it?’
They’d smile politely, giving assurances the company was an equal opportunities employer, but I didn’t find work as a lawyer again. It was a bitter pill to swallow.
Now, what I can physically do may be restricted at times, so I have to be resilient and find alternative ways to achieve my goals. Being resilient doesn’t stop me feeling angry, though I use that anger and hatred for Parkinson’s to create positive outcomes. It’s one of the tools I use to keep moving forward.
This disease can zap your self-worth but you can keep doing what you want to do, even if it means finding an alternative way of doing it.
Yes, I have Parkinson’s disease but I won’t allow that label to limit me. I focus on doing the physical challenges I enjoy so much and next on the list is Racing the Planet - an ultra marathon on the Namibian Skeleton Coast later this year.
I have hope in better treatments for Parkinson’s being discovered. I have hope of living a fulfilled, happy and comfortable life. But mostly I hope that someone, somewhere a fellow Parkinson’s sufferer will see what I’m doing and gain the confidence they need to stand up and live their life.
To learn more about Alex, visit his website here. To help Alex fundraise for Parkinson’s UK, visit his Just Giving page for his latest challenge - climbing double the height of Mount Everest at home during the Covid-19 lockdown, using just his stairs.
*For help, support and information about Parkinson’s, visit the national charity here.
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