Parkinson's People - Guy Deacon's African Journey

Driving from Freetown to Cape Town to raise awareness of the disease

The great thing about Parkinson’s is……now admit it, you’re not sure where this is going. How can there be anything good, let alone great, about an incurable neurological disease? But for me there has been one really positive thing since I was diagnosed three years ago and that is becoming part of the Parkinson’s community and meeting some great people.

People like the Vicar of Dibley writer Paul Mayhew-Archer, a very funny but also extremely kind man whose TV documentary about Parkinson’s and dance is inspirational. Like the quizzer and stand-up comedian Paul Sinha, passionate about not letting the condition define him. And like Emma Lawton, diagnosed with Parkinson’s at 29 but refusing a decade on to give up on her dream of launching her own business.

Now I’ve met someone else with a mission to carry on living his life to the full despite the challenge of coping with Parkinson’s. Actually it was via a video call that I met Guy Deacon, who is in Sierra Leone preparing to set off on an extraordinary adventure.

Guy who had a long career in the army and retired as a Colonel in 2019 first learned he had Parkinson’s in 2011. In November 2019 he set off to drive all the way from the UK to Cape Town, partly because he had always wanted to but also to prove a point:  “To demonstrate to anybody that’s interested that just because you've got Parkinson's doesn't mean to say you can't do the things you want to do. And you should try and live your dreams as best you possibly can.” 

(You can watch my conversation with Guy here:)

But in March 2020 when he had reached Freetown in Sierra Leone, Covid-19 meant his dream had to be put on hold, and he returned home. Two years on, he’s back, older and a  bit frailer as his Parkinson’s symptoms worsen - “I'm simply not as strong as I used to be and much slower than I was two years ago” -  but with a new sense of purpose,

He now wants to highlight the impact Parkinson’s is having in African countries, where often there is little or no effective treatment for those with the condition:  “There's a stigma associated with the  disease because there's no known cause,” he explains. “I've heard of stories where people have been locked in their homes and their families have left them because they've been worried about catching it or being associated with it. And they want to distance themselves and people are left to die because they can't fend for themselves.”

Guy’s plan, on what he expects to be a nine month journey, is to meet people with Parkinson’s and organisations helping them along the way. He has teamed up with a documentary maker Rob Hayward, and plans to shoot material for a film which would show his own struggles on the trip with the disease and those of the people he meets.

The project, backed by Cure Parkinson’s and Parkinson’s Africa, has been raising funds via Indiegogo and the hope is that the documentary could be shown by a major broadcaster.

With a trunk full of Sinemet, the drug he takes four times a day to ameliorate Parkinson’s symptoms, Guy Deacon is well prepared for his trip but knows that he will have good days and bad days. He knows that many people in African countries never get access to any drugs but he hopes that he can at least dispel some myths about the disease:”It's just a question of looking after people as best we can to make their lives more bearable while they're going through a horrible time.”

I’m hoping that once he gets underway in a week or so, Guy will give us regular updates on his progress.