Neil Russell finds running easier than walking. ‘I find it hard to walk in a straight line. I look a bit like a drunk who’s just been thrown out of the pub and he’s staggering home. But when I run, all of a sudden a different part of my brain kicks in and I can go straight,’ he explains.
The 65-year-old from Bourton-on-the-Water in Gloucestershire had worked in the advertising business for over 30 years in 2018, when he noticed that his handwriting was becoming much worse and a slight tremor was developing in his right arm. At first he thought he was drinking too much coffee, but after a lot of internet research, he wasn’t surprised when a neurologist eventually confirmed a diagnosis of Parkinson’s disease.
‘I did have a period of adjustment. You’d be a machine if you didn’t feel anything,’ he says of his early days trying to accept that he has a degenerative nervous condition with no cure. When you hear the illness’s name you might think of the rock star Ozzy Osbourne, who has now had to retire from touring; the actor Michael J Fox, the subject of a recent Apple TV+ documentary about living with the disease entitled Still; or Jeremy Paxman, the feared television host forced by his illness to retire in 2022, who now appears on a podcast about Parkinson’s called Movers & Shakers. ‘But once I had a chance to get my head around it, I thought: I’m not going to let this thing define me. I’m not going to let it tell me what I can and can’t do.’
As soon as we meet, Neil explains the ways in which he might appear a little different – his way of putting new people at ease. His arm tremor is now significant, but comes and goes while we talk. He warns me that he may stutter when trying to get words out, and that he might forget what he’s saying or need to take a break. He has a crib sheet with him to help him to remember key points, and his partner of 20 years, Nicky Patterson, sitting beside him to take over if necessary.
If that makes him sound fragile, his achievements since his diagnosis are anything but. He was a three-time Ironman competitor prior, finishing once in Weymouth and dimissing himself as a “plodder”. Maybe so, but in 2021 he plodded from John O’Groats to Land’s End in 36 days, raising £15,000 for Parkinson’s UK. Then, between May 25 and June 30 this year, he ran from London to Barcelona, arriving in time to be a special guest at the sixth World Parkinson Congress and so far, receiving over £10,000 in donations to share between Parkinson’s UK and a second charity, Cure Parkinson’s. The gathering of scientists, researchers, people with Parkinson’s and their carers takes place in a different city every three years.
It was 84 miles from London to Portsmouth, then 814 from the Caen ferry port in France to Barcelona, including the crossing of the Pyrenees mountain range. ‘Those days were the most physically demanding of all because it was just up and up and up, and it was particularly hot as well,’ he says. ‘What kept me going was the scenery. Every time you turned a corner there was another landscape that was just unbelievable.’
Otherwise, he saw fewer sights than you might expect, trying to keep to back roads and so intent on avoiding the hottest part of the day that he developed a routine of starting to run at 3am and finishing mid- to late morning. His way was illuminated by the bicycle headlamp of Katy Miller, an event planner who accompanied him on wheels, and Nicky’s camper van, joining sections of the run as well as heading off to sort food, washing and accommodation, either in campsites or rudimentary hotels.
Problems arose when he had to pass fierce farm guard dogs in darkness, or do some of his miles on a dual carriageway with lorries thundering past. ‘The most challenging aspects of the run were the heat, then the hills, then the dogs,’ he says.
You’ll notice he doesn’t include his condition in that list. He has become adept at managing it with medication, despite its accompanying nausea, and by knowing when fatigue means he needs more help. Katy was his eyes for crossing busy roads safely, and Nicky ensured that he became an ‘eating machine’, fuelling in some way every half hour. As for Neil, he seems certain that epic challenges like these are actually arresting his decline, not speeding it up.
‘My Parkinson’s has remained relatively stable, and that’s down to the running,’ he says. ‘I can’t prove that scientifically, but this is what I feel because I know my body better than anybody else. I’m not saying that everyone with Parkinson’s should do what I’ve done, but if you are more physically active, you will feel the benefits.’
Even Nicky, who worries about him whenever he goes for a short run at home on his own, is on board with it. ‘I was concerned about him doing anything more after this, but I’ve said to him: “You have to keep on doing it.” It’s not just physically good for him, but mentally as well,’ she says. ‘It’s clear that this is what’s keeping him going.’
Their biggest worry now? Which ultra challenge to pick next.
Neil’s donation page is open until December at app.collectionpot.com/pot/3039152/
