Guy Deacon CBE has just completed an inspirational 18,000 mile solo journey from London to Cape Town while living with Parkinson’s Disease
Guy first became interested in travelling to Africa when he was a teenager at Sherborne School: ‘In my last year, I received a travel guide about Africa, and on the cover was a photo of people setting up camp in the Sahara. And I wanted to do it. I thought it was fantastic – but I never found time to do it. I’ve always had that dream, since I was 18. I retired in 2019, and I finally had the time to do the journey, so I just thought I’d get on and do it.
‘I already had Parkinson’s by then and I did think everything might be too difficult, but a friend said: “you have to get on and do this. Don’t give in.”
‘Parkinson’s is a degenerative disease – it doesn’t get better, it just keeps getting worse. So if I didn’t do it then, I wouldn’t do it at all. That’s why I got off my fat arse and just got on with it.
‘My aim was to prove to myself I could. A supplementary aim was to demonstrate to others that just because you have Parkinson’s, it doesn’t mean you can’t do what you want.
‘I wanted to set an example. Others might not want to drive through Africa, but they could set their own goal – even something simple like going to the cinema or taking the dog for a walk. You should keep trying to do things until you know you can’t.
‘I was diagnosed with Parkinson’s in 2011. It was a surprise and probably a shock. I knew something wasn’t quite right – I was in the army, a colonel in The Royal Armoured Corps, and had just returned from working in the Congo. I was very run down but didn’t expect to be told that. I didn’t know much about Parkinson’s at the time. The doctor said I needed to see a neurologist straight away, and it took them about ten seconds to diagnose me, it was so obvious.
‘The doctor told me to keep on doing what I’m doing. He said “the good news is it won’t kill you. The bad news is it won’t get any better”. I carried on working until 2019, the army was an excellent employer.’
Accommodating his health while planning for the journey across Africa was complex – Guy had to take at least three months’ supply of medication with him.
‘To start, I planned to go as far as Sierra Leone. I wasn’t sure after that, so I had enough supplies to last me until then. I was taking eight or nine pills a day. Thankfully the army was my pharmacist, so I didn’t have to do repeat prescriptions every month. You can’t get the drugs in Africa – and if you can, they may not be the right thing.’
With a special message
Guy’s solo driving route took him from his home in the UK 18,000 miles and through 25 countries along the west coast to Cape Town on the southern tip of Africa. He planned it to avoid conflicts in other parts of the continent, and he was keen to visit countries he had never been to, like Togo and Benin.
‘People were amazed. When they saw the English car with the right-hand drive, their eyes would light up when they heard what I was doing. All along the coast, they were so helpful, or soon became supportive when they found out I was old and infirm. There’s this huge respect for older people in Africa. They were very respectful of my age and were fascinated by my story.
‘When I met people with Parkinson’s, they thought I had come to see them. I arranged to meet people along the way and had contacts through Parkinson’s UK.’
Guy had a special message to bring some of the people with Parkinson’s disease. In parts of Africa, the disease is regarded as witchcraft, and sufferers are isolated and shunned by their community.
‘Because there’s no cause or cure, it manifests in unpleasant ways and arrives from nowhere, people don’t understand it. Tribal and traditional faiths are still powerful in some places. There’s a huge stigma attached to it. People are shunned. I met one chap whose mother had Parkinson’s at age 35. He and his family left her in her house, and she died five years later, starving to death. She spent five years in isolation because people were afraid of catching it and thought she was a witch.’
‘It became my mission to go along and see these people, show them that they can do things. Still live their life. Drugs are important, medical care is important, but most of all it is the care and love from your family. Just telling people they can hug someone can make a huge difference. It’s like the Diana moment. When people realise they won’t catch it, they can give better care.
‘I appeared on radio and TV there to give my message. I estimate I barged my way into 500 million households! I’d do a radio interview in every country I went to. Some places really want to do something about the stigma – people began to recognise me.’
Guy had got as far as Sierra Leone in early 2020 when COVID 19 started.
‘It was very interesting in Sierra Leone because they had experienced Ebola, so they were very conscious about disease management. Everyone wore masks, and there were hand-washing stations everywhere. You couldn’t go anywhere without washing your hands, you couldn’t use a cash point without handwashing, or the police would stop you. At the time, there was no indication of it getting into Africa, and I thought I might be OK, but I was persuaded that if I did get it, the hospitals would not be able to cope.
So I was on the list for an evacuation, and the UK Government flew me home. I left my vehicle with a colleague and he kept it for two years but I returned in 2022.’
The kindness of strangers
When Guy returned to Sierra Leone to continue his journey, his symptoms had worsened, but he was determined to complete the journey. He met many people on the route, with complete strangers stepping forward to help him.
‘The deeper the trouble you are in, the more people will help you out of it. I took things terribly slowly and stopped a lot. I did things as and when I could.
‘In Andorra, I had a problem with the differential, and a Moroccan mechanic, Mohammed, stepped in to help. He was fantastic. I met him again in Morocco, and he became a really good friend.
‘In Gabon, I hit a pothole, bent the suspension and couldn’t move. The first person who stopped asked if I was alright. He spent eight hours with me until the truck driver came. All the way, people bent over backwards to help. In Libreville, the taxi driver would only leave me once he knew I was in the right place.
‘The one occasion when I couldn’t manage and was nearly carted off in an ambulance was in Ivory Coast. I didn’t take my pills in time, had a bit of a meltdown and got distressed. I was in a shop, and started to make no sense. I didn’t have my phone as I had left it in the car. The staff took me to a quiet area, but I couldn’t explain. A doctor checked me, and I was fine. One of the shop attendants had my car key, and she found my phone so I could ring someone. And then she ordered a taxi to take me to her home where I could rest.’
Finally, Guy arrived in Cape Town – the end point of his momentous journey.
‘There was no champagne or ice cold beer. It was actually disappointing, and I shed a tear. ‘All of a sudden, it was over.
‘And I was so very tired.
‘If I had to pick one single highlight of the journey it was appearing on TV in the Ivory Coast and my family came on screen to encourage me!’
He drove his wagon for the last time on December 7th 2022, before handing the keys to a friend and flying back home to England and his home near Sherborne.
Guy has established a charity that will help fund grassroots projects to de-stigmatise Parkinson’s disease in Africa and improve the quality of life for people with the disease.
Guy has also written a book, Running on Empty, which tells the story of his remarkable journey: ‘Parkinson’s is a pain in the arse, but if you don’t let it get to you, you can enjoy your life to the full.’
- The new book Running on Empty by Guy Deacon is published on 11th April, £9.99, and all proceeds will go to Parkinson’s charities.
For more information visit guydeacon.co.uk
