"Running gives me back control" - Neil's story

Since Neil was diagnosed with Parkinson’s 4 years ago, running has given him a sense of empowerment over the condition. He shares his story.  

For 12 months before Neil was diagnosed with Parkinson’s, he had been experiencing a tremor in his right hand. His GP diagnosed an essential tremor and Parkinson’s was initially dismissed. But after seeing three different neurologists, his current specialist told him he had Parkinson’s. 

“By that point, I knew, I’d worked things out for myself. I wasn’t massively shocked, but I was eager to know if I could keep running.” 

Running has been a lifelong passion for Neil. He had started running at school and over the years, moved to competing in triathlons. After a bad bike accident, he was advised by his medical team to retire from cycling. So he sold his bikes and returned to running again. 

“It was like a knee-jerk reaction and I just blurted it out. The neurologist said yes and that was like music to my ears,” remembers Neil. “At that point, the Parkinson’s diagnosis almost became irrelevant.”

I made a conscious decision not to find out what happens in Parkinson’s. Otherwise, if I know something, I’ll be lying in bed thinking ‘Oh god, is that a symptom?’ It will play on my mind.

An annoying puppy

Coming to terms with the diagnosis though, proved to be a process over the coming weeks and months for Neil. 

“Parkinson’s is like an annoying little puppy, not doing as it’s told. It’s over excitable and doesn’t know better. Getting cross with it is not the answer then, but reality did begin to kick in,” admits Neil.

“‘I’ve got Parkinson’s’ became a little niggle that kept playing in the back of my mind. I don’t sleep well and if I woke up, that’s it, I’d be thinking about Parkinson’s. 

“So I made a conscious decision not to find out what happens in Parkinson’s. Otherwise, if I know something, I’ll be lying in bed thinking ‘Oh god, is that a symptom?’ It will play on my mind.
 
“For my sins, I bury my head in the sand and just take each day as it comes. Today is today, tomorrow is tomorrow. That is the approach that works for me,” says Neil. 

Facing challenges

Neil was prescribed medication, which helped his Parkinson’s symptoms. Managing his mental health though, was more challenging.  

“I was in a dark place. The only relief was my running,” admits Neil. As he began to cover longer and longer distances, he started to miss not having a race to focus on. “It was while I was training for my first ultramarathon that the idea to run from John o’Groats to Land’s End (‘JOGLE’) started to form.  

“I’ve always done things that challenge me, whether it is work, career, or sport and the idea went in and out of my mind for sometime,” says Neil. “I talked it over with my partner Nicky who was very positive about it, but there was still an element of self-doubt.”

A few months previously, Neil had been to an event and seen Luke Tyburski, an endurance athlete, give a talk. He decided to email Luke and asked if he thought he was crazy. To Neil’s surprise, Luke replied and told him to go for it. 

The final hurdle before Neil began training for the event was to speak with his neurologist. Neil says: “He gave me his blessing - although even if he hadn’t, I would have done it anyway!” 

Neil trained for a year for the challenge and in July, he completed 36 back-to-back marathons to successfully run the length of the country. While running, he wore a t-shirt, which said “Because I can.”

Sometimes you can feel you are at the mercy of Parkinson’s, but running gives me back control. I’m 64 now and am still planning on running when I’m 74.

Keep going

"For me, physical exertion is about looking after my mental health. When I’m not running, I’m not as nice a person. I’m moody. I can be difficult to be around. When I’m fitter, I feel better - I can deal with things just that little bit better.

“What I did with JOGLE is extreme,” laughs Neil. “There’s no way you need to do remotely close to what I did. But just start by going for a walk to raise your heart rate a little - exercise doesn’t need to be purgatory!

“My Parkinson’s hasn’t deteriorated in a long time. Is that my stubbornness? Is it my running? I don’t know.” admits Neil. “But I will challenge anyone to say they feel worse after running. 

“Sometimes you can feel you are at the mercy of Parkinson’s, but running gives me back control. I’m 64 now and am still planning on running when I’m 74.

“Of course, I do have my own internal battles with Parkinson’s, but I am not a quitter,” says Neil. “I just point blank refuse to let it beat me.”

Read more about exercise and Parkinson's.