In December 2022, 62-year-old Guy Deacon arrived in Cape Town after driving his VW campervan all the way from Dorset.
Completing this 18,000-mile journey – which threads through 25 countries – would be an outstanding achievement for anyone. But as well as tricky border crossings, numerous breakdowns, and perilous roads, Guy also had to contend with Parkinson’s disease.
“I wanted to prove that you can do anything you want with Parkinson’s,” he tells us. “It might be more difficult, but if you try hard enough, you can still live out your dreams.”
To coincide with World Parkinson’s Day, Guy has released a book, Running on Empty, chronicling his inspiring adventure – with all the proceeds going to charity. We sat down with him to learn more about his journey and ongoing mission to spread awareness about Parkinson’s.
“You never suspect you’ve got Parkinson’s”
After spending his childhood in the Southwest, Guy went to Durham University, where his passion for travel began. He explains, “At Durham, I fell in with some great mates, and we went on several expeditions to Kenya and Algeria, which were fantastic.”
As the son of a soldier, Guy had always planned to join the military. After finishing his studies, he enrolled and became part of The Queen’s Dragoon Guards cavalry regiment. A long, distinguished career followed, which allowed Guy to satisfy his wanderlust. Over the years, he was stationed all over the world – from Germany and Belize to Mauritius and the Congo.
“At one point, I was accused of not taking my career seriously enough and spending too much time travelling around,” Guy chuckles. “Which I take as a pat on the back, really.”
When Guy was diagnosed with Parkinson’s in 2010, the father-of-two had just returned to Dorset from the Congo, where his regiment was working to disarm rebels and keep the peace.
“I’d had it for a long time before,” he explains. “There were some fairly obvious symptoms. My right leg would always drag, and I couldn’t put my hands in my pockets. But I just blamed it on the rocky ground or thought I had a trapped nerve. You never suspect you’ve got Parkinson’s.”
However, Guy was determined not to let his diagnosis interfere with his career. He served another nine years in various roles – including Colonel of the Royal Armoured Corps – until he retired in 2019.
But retirement didn’t mean slowing down. In November of that year, he packed up his campervan and set off on his African adventure – a trip he had planned since his university days.
“People ask me, ‘Why Africa?’ Well, because there’s a romance about it”
Guy’s initial goal was to reach Sierra Leone via Africa’s west coast. From there, he’d decide whether or not to go further.
He says, “People ask me, ‘Why Africa?’ Well, because there’s a romance about it. Rightly or wrongly, it’s ingrained in our history ever since explorers of old like Stanley and Livingstone. And I think it’s the most fantastic place – the people are so cheerful and hearty.”
There were also practical reasons for Guy’s choice – a key one being that North Africa is accessible by car from the UK. So, after travelling across France and Spain, and catching a ferry over the Strait of Gibraltar, Guy soon found himself on Moroccan soil.
Hugging the coast, the first part of the route took him through Western Sahara and Mauritania before arriving in Dakar, Senegal, where he had to wait for visas. “I stayed with some very kind people in Dakar and loved Senegal,” he says.
Soon, Guy was on the road again, travelling through Guinea and Guinea-Bissau. However, by the time he reached Sierra Leone in March 2020, the COVID-19 pandemic was emerging. As a result, he had to make the difficult decision to return home, leaving the van in Africa.
“What people [with Parkinson’s] really want is to be loved and cared for properly”
![“What people [with Parkinson’s] really want is to be loved and cared for properly”](https://media.restless.co.uk/uploads/2024/04/guy-deacon-4.jpg)
While Guy was initially disappointed to put his journey on pause, in some ways, it turned out to be a blessing in disguise. During the first leg of the trip, Guy had hoped to meet with some experts to learn more about Parkinson’s, but this hadn’t been possible. However, after returning to the UK, he met two people who helped focus his mission.
The first was Rob Haywood, a filmmaker who was interested in making a documentary about Guy’s journey. Guy says, “We made a short clip to raise money. It was very powerful, and the number of donations and supportive comments I got was huge. I realised that people were interested in what I was doing.”
The second was Omotola Thomas, who works for a charity called Parkinson’s Africa. She was able to tell Guy more about the situation in West African countries.
Through Omotola, Guy learned about some of the misconceptions around Parkinson’s that have developed in communities due to a lack of information and awareness. For example, Guy tells us that some people in Africa believe that Parkinson’s is contagious or caused by witchcraft, which results in some families abandoning those living with it.
This education inspired Guy to redouble his efforts. So, when he returned to Sierra Leone in April 2022 and hit the road once more, he worked continuously with Rob, local media outlets, and Parkinson’s groups along the way to share his story and dispel myths surrounding the disease.
“I met lots of people in Africa who are living with Parkinson’s, who don’t have drugs and are treated badly because it’s not understood,” Guy says. “And whilst pills and neurologists are all very good, what people really want is to be loved and cared for properly. So I want to shine a light on Parkinson’s and draw attention to these people’s struggle.”
Back in the UK, Guy hopes to spread awareness about the effect that Parkinson’s can have on mental health.
“We all think we know what people with Parkinson’s are going through: they stumble, trip, shake a bit. But that’s only half the story. The other half is the mental anguish, the lack of self-pride and self-worth – the desire to isolate yourself. Although people don’t necessarily say this, you don’t feel worthy of people’s company, and you back off, which is a really bad state of affairs.”
“In almost every country I went to, I received so much care, attention, and helpfulness”
While Guy returned to Africa with renewed vigour and vision, he unfortunately found that his Parkinson’s symptoms were getting worse, which made the going tough.
“I noticed that I couldn’t do some of the things I could before,” Guys explains. “Things like changing tyres and packing up the van were significantly more difficult.”
One particularly challenging incident occurred when he got lost in Abidjan, a city in the Ivory Coast. “Parkinson’s pills wear off very quickly, and suddenly, I melted down,” he tells us. Unable to explain what was happening, Guy nearly ended up in hospital. But with a little help from the locals, he was soon back on the road again.
Guy says, “In almost every country I went to, I received so much care, attention, and helpfulness from people. I felt quite humbled. They were so kind, and I couldn’t possibly have done it without them.”
“Everything I do from this point onwards is about raising awareness”
On the second leg of his trip, Guy successfully travelled through 14 more countries and arrived in Cape Town in December 2022.
He says, “I turned the engine off, slumped down in my seat, and put my head on the steering wheel. I felt a mix of elation, from having completed it, and deflation, from having literally been exhausted by it.”
After a total of 12 months on the road, his odyssey was finally at an end. But his mission to spread awareness is far from over.
“Everything I do from this point onwards is about raising awareness and campaigning on behalf of people with Parkinson’s,” he says. “Whether it’s taking another trip, writing another book, or giving talks.
“I’ve got two choices in life. One is to do nothing – and a lot of the time, I feel like doing nothing. Just getting out of an armchair is difficult, and every day, I think to myself, ‘It’s not worth the effort.’ But then it gets better. You’ve got to have a reason to get out of bed, and mine is making sure people understand as much as they possibly can about Parkinson’s. It’s everything for me at the moment.”
To learn more about Guy, his upcoming Channel 4 documentary, and how you can help, head over to his website. And, for an in-depth account of his inspiring journey, why not order his book, Running on Empty, using the button below?
Are you inspired by Guy’s story? Or do you have a story of your own you’d like to share? If so, we’d love to hear from you in the comments below.