‘I wouldn’t let this condition stop me’

Retired army colonel Guy Deacon had dreamed of travelling overland from his home in England to Cape Town in South Africa since he was a university student and he was adamant that he wasn’t going to let Parkinson’s disease stop him.

Diagnosed with the progressive neurological disorder in 2010, Guy began his epic cross-continental road trip the day he left the British army in November 2019 after a distinguished 35-year career.

He was only a few months into his 18,000 mile, 25-country odyssey when it was brought to an abrupt end in Freetown, the capital of Sierra Leone, by the Covid-19 pandemic. Almost exactly two years to the day he arrived back in England, he resumed his travels in Freetown in April of last year and made it to Cape Town in December after a challenging yet rewarding journey down the west African coast.

Speaking to the Westmeath Examiner on a recent visit to Westmeath to visit his friends, the Pilkingtons, in Coole, Guy said that he feels “lucky” that he had “the time, the money and the inclination” to fulfil what was a long held ambition.

He may have still had the inclination, but the post-pandemic leg of the trip was more difficult than the first part, he says.

“The two years that I was back here my condition had got worse and I hadn’t really appreciated that until I got going again.”

One of Guy’s objectives on his journey was to raise awareness of Parkinson’s disease in the countries that he visited, as there is still a stigma attached to it in many parts of Africa.

“Parkinson’s exists in Africa as much as it does in Europe. In Europe we all know about it, or think we do, but in Africa, they don’t.

“Some countries are better than others, but some assume it is witchcraft and it’s contagious. They lock people away and let them die in isolation. They don’t feed them or look after them. They literally abandon them and leave them to their fate.

“As I was going through Africa, I was appearing on national radio and television. They were all interested in talking about the journey but I steered the conversation towards Parkinson’s and explained that it wasn’t contagious and what they need [people with Parkinson’s] is to be loved and cared for by their families.”

While there is a better understanding in the Europe and the rest of the developed world about Parkinson’s, Guy says that there is one side to the illness that many people know little about.

“What people don’t understand are the mental aspects of it. Those that do understand it know that it is physically difficult and that you can’t do things you used to do, but very few people understand the mental burden that comes with it.

“A lack of dopamine has an effect on your moods and people with less dopamine are generally less cheerful and more miserable. It does cause depression in many – not in me, I don’t think, although I get very unhappy and very frustrated.

“The fact that you know that every day is going to be worse than the one before is not a good position to be in.”

During the second leg of the journey, Guy’s campervan broke down on a number of occasions, while he also had periods when his symptoms worsened. He made it through those challenging episodes thanks to the strangers he met.

“At every point I met the kindest people imaginable. There were many times that I genuinely needed help, such as when the van broke down on the side of the road or had an accident, people would stop and help me without thinking twice. Everywhere I went, I was met with complete kindness.

The kindness of strangers when people have no money and nothing for themselves is extraordinary.”

Guy was joined at times on the second leg by filmmaker Rob Hayward, who is making a documentary on the trip that will be aired on Channel 4.

The documentary – he is also writing a book on his journey with a ghost writer – will feature the highs and lows of the trip, including when he met African people with Parkinson’s, some of who are outcasts in their communities, and the doctors and charity workers who are trying to change people’s opinions.

The documentary also throws a spotlight on “beautiful” West African countries, such as Gabon, Senegal, Equatorial Guinea and their “extraordinary” inhabitants.

Wherever Guy goes, he says that his “business is to spread the world about Parkinson’s and although he travelled the world during his time in the military, his recent visit to Ireland was his first.

He quickly became enamoured with the Westmeath countryside and its inhabitants, he says.

“First thing, I love the villages. I was staying with the Pilkingtons in Coole and I was quite taken by the loughs, they are all terribly beautiful. It is a very gentle countryside. I met a few people in the pub last night and they were friendly, good laughs, no animosity at all.

“I have been staggered about how friendly people have been and it’s just a very lovely part of the world.”

As for what the future holds, realist Guy, who is an ambassador for the Cure Parkinson’s charity in the UK, is under no illusions about what lies ahead, but he is determined to keep challenging himself and living his life to the fullest for as long as he can.

“If you stop and start thinking about your condition, you force yourself into a downward decline. I try to demonstrate to people that with effort – and it’s a lot of effort – you can still do what you want to do if you try hard enough. Hence, travelling to Africa. I always wanted to do it and I wasn’t going to let Parkinson’s stop me.

“If someone wants to play golf, they can go and play golf. They can go swimming. They can still do what they want do it. It is just more difficult and takes more time.”