Guy Deacon CBE on driving 18,000 miles down Africa with Parkinson's

Coinciding with World Parkinson’s Day (April 11), former army officer Guy Deacon CBE releases his new book Running on Empty, with all proceeds going to Parkinson’s Charity. It tells the story of how Deacon, a Parkinson’s sufferer himself, drove 18,000 miles down Africa to raise awareness about the disease and battle harmful stigmas.

A Channel 4 documentary of the same name about his struggle with Parkinson's will follow later this year. We talked to Guy about his incredible journey and achievement and why it’s so important to get the word out.

It was a childhood dream. I was at school when I received a Wexas traveller’s handbook and on the front cover, there's a picture of a couple of Land Rovers in the desert with the sun setting behind them, and people still clambering all over. And I thought, that's what I want to do when I grow up. So this is 1979 or 1980. I've always had this idea to do this when I got the time and money put together.

Then I joined the army at university, and I met people and we did some adventurous stuff. We went to the Sahara and went to Kenya a couple of times. When I was young officer in the army, I drove to Kenya so it was all possible. It was always in my mind to do it when I retired, because I didn't have enough time to do it and I didn’t have enough cash in the bank as well. It was always a childhood dream that I was going to live and do.

It depends on what's going on around you at the time—sometimes everything's very easy and sometimes it’s very difficult. The thing that's very difficult is meeting deadlines, stress caused by having to be in the right place at the right time, and responding to other people's requirements. If you're left alone to your own devices, actually, that’s reasonably simple because you're not under pressure and you can do things very peacefully and very slowly.

Much of the journey I was travelling by myself, I had nobody to be responsible to besides myself. That was quite easy, a little bit lonely, but by and large, really straightforward. And I was very careful to make sure my paperwork was ready for all the borders, because I thought it would be very stressful. But they were never that difficult to be honest. I just had to spend time to show them this and that and pay the odd bribe—nothing very serious. That was much easier than I thought it was going to be.

What was much more difficult was actually the driving, strangely enough. Because I if I had a deadline, it meant I had to keep going, but if I could just not rush, that was fine. Your feet and your arms don’t behave quite as they should, so I had to be very careful about that sort of thing.

Especially in the second half, and the first half to a degree, I was meeting people at various places, and then I was responsible for being able to be there. That meant I had to sort of stick to a timeline.

Whether it be my wife arriving with my daughter in Morocco, or whether it be being in in Kumasi in Ghana to meet up with people to do Parkinson’s interviews, whatever it was, if there was timelines attached to it, and I was running late I find it really difficult.

It was incredible. I thought things would be quite difficult and I thought, what's the worst thing that could happen to me? I could get kidnapped and could be kidnapped and my vehicle could be stolen. But if the vehicle is nicked, it wouldn't really matter. It's just a car after all. And I couldn't see any reason at all, why anybody would want to kill me. There's just this old bloke wandering around like a fool, what damage am I doing? I never really felt that I'd be a victim of that, wherever I went.

Indeed, I never had any hassle at all apart from one very minor occasion when somebody shouted me a lot for trying to buy diesel and he was obviously high on crack or something. It was in Nigeria and that was the only time I felt threatened by anybody. One time I was in a campsite, which turned out to be more of a scrapyard surrounded by rather strange people. But I never felt threatened at all and people could not have been kinder.

The dangerous thing is you spend a lot of time on the road, and you get very tired. The roads are not very good, so things can happen. You just have to have your wits about you all the time and people drive in a strange way. There's far more risk of having a road traffic accident than anything else. As long as I took my time, was careful and didn't drive fast then I'd be fine. But with people, as long as you’re not rude and you’re polite to people and you ask the way nicely, people will always help you. It's so obvious to me. That's the way I went through it. I just asked people to help and people always do help.

Lots of them really. On one occasion, I hit a pothole quite hard. I was obviously driving too fast, but this pothole popped up out of nowhere. I bent the front suspension, and I couldn't travel at all. And the first vehicle that stopped in a pick-up was a smart chap who asked if he could help. He then stayed with me for nine hours, along with the next driver, who was a big truck driver. The two of them helped me get the vehicle moving again. It took nine hours to do it, between sort of three o'clock in the afternoon to midnight, and then they escorted me to the nearest village where the nearest mechanic was.  

I left the vehicle alone, with all my possessions in it, and went down to Libreville in Gabon by myself with my passport to meet up with the cameraman because I was under pressure to do it, and I trusted this chap I'd never met before to look after my vehicle with everything in it and to ship it down to Libreville, and he did.

When I when I got down to Libreville I thought, what have I done? I imagined it had been stolen because if it didn't arrive on the day it was supposed to. I couldn’t telephone the chap because there was no signal and I thought I’d made a big mistake. But it arrived in very good order and it was amazing really.

I didn't know, to be honest. Again, I was very open, because I had no real job to come back. Covid arrived in Europe first of all, and Sierra Leone was very grown up about it. There were sanitation stations everywhere. They were very good at controlling populations and movement, and not having lots of people crammed into one place. And then when they eventually closed down, they shut the streets completely and you couldn't go out anywhere. So their rigour was much better than in Europe, I suspect. I felt that there was probably less probably less chance of me catching it in Sierra Leone than in Europe, which I think was probably the case.

I was persuaded at the time that if I did catch it, it would be much more serious in Sierra Leone than it would in the UK, so I would be better off going back to the UK. I eventually bought the last ticket back on Air France, which was then susbequently cancelled, and then I was flown back by the British Embassy on their emergency evacuation flight. I found myself back in England, leaving the vehicle in the capable hands of people I’d only met two weeks before.

I couldn't wait. I thought I'd be gone for three months. I thought it would be all over by then and we’d be back in the summer. I remember somebody saying “it'll be a year” and I thought, it can’t possibly be a year. I can't wait for a year with my vehicle out there getting flat tyres. But, of course, it was two years and by then I was quite looking forward to getting back.

But the opportunity, when I was back in the UK, was to meet people and to refine what I was doing was important. I met Rob Hayward, the filmmaker. I spoke to people who would help me do the book. I got the plan right and met more people from Parkinson’s in Africa. I therefore think I was much more focused on what I was going to do. Because up until that point I've been my modus operandi been to demonstrate to others who've got Parkinson's that they too can do what they want to do if they want to do it badly enough. It may not be driving through Africa, but it might be playing a round of golf, taking the dog for a walk, going to the cinema, or whatever it happens to be. I had met Parkinson’s Africa and I’d said, “I'll try and find out how many neurologists there are”, but I wasn't very good at it, to be honest. I was just focused on getting down to Sierra Leone.

When I got to Sierra Leone, I then had a proper mission—I had people to meet. British embassies were very, very good at helping me make contact with hospitals and with people at Parkinson's, and the whole ball got rolling. I ended up doing something like 25 television interviews, 30 radio interviews, numerous newspapers all the way from Sierra Leone down to South Africa.

Well, I was dreading it to be honest, for two reasons. Firstly, I knew their situation would be worse than mine. And secondly, I knew I had a boot full of pills in my car, which I wasn't going to give them because I needed them myself. So I didn't feel very comfortable about that. And others might have shared their pills, but you can't really exist without them to be honest. And I had a long way to go. It wouldn't have helped for a short period of time, because you need continual pills. My conscience is clear enough.

The first person I met was in Liberia. He was not much older than me but he was a complete shadow of a normal person—he couldn't really move and sat there mumbling. Interviewing him and filming him was really uncomfortable. Because what can you say? Apart from, “I know what it feels like, mate. And there might be a cure, but not for you.” It's all not good news. All I could do is reassure him that he wasn't alone. And he wasn't the only person and then there are lots of other people in the same boat. That was the best I could do and it was very inadequate, to be honest.  

But because I was appearing on television and radio, I got access to government ministers in certain places. Unfortunately they couldn’t do very much but at least they were aware of it and some countries don’t even know how many people have got Parkinson’s. If they can work that out then maybe they can figure out what they should be doing. It’s not just the preserve of the Europeans and the North Americans, it’s all over the place.

You're not just right, it's the fundamental issue in some countries. In Ghana they understand it, have some good neurologists and processes to look after people. But in Uganda, for example, they are absolutely convinced that it is a result of witchcraft. And if you've got Parkinson’s, there's a reason you've got it and you've done something wrong. We've been cursed.

There's a very good example of a chap called Hannington, who I've spoke to a lot and flew out later to go and meet actually. His mother died with Parkinson's and she only in her thirties or forties, I suppose. When the witch doctor came along they said, “you're cursed. Your family must leave you so they don’t catch it. You must be abandoned”. And she, with her husband, agreed to be left alone, in her own house and the family moved away, and left her there to stew.

The next-door neighbour of the village would feed her routinely with a long stick pushing plates under the door. And she was left there, and her son Hannington would go the go back each weekend, against his father's and mother’s wishes because he loved his mother so much. And she would say, “go away! Don’t come near me!”, because he didn't want him to catch it. It's a dreadful story and he eventually went back and she was shrivelled up on the floor, scraping mud off the walls because she was so hungry. She died after five years or something like that, in isolation. And it didn't need to happen. That's the point.

What Hannington did, he got on the internet, put in the symptoms he saw and realised it was Parkinson’s. It’s incredibly obvious if you know what to look for. He worked out that it's not contagious, that there are pills that can do something about it. And most importantly, people can be cared for normally. He set up a little charity in Uganda, which does just that. And he's making a difference. That's what this is all about. Because pills are great, neurologists are great, but they're not very easy to get hold of. They're too expensive people to get routinely. But what really counts is people caring for those who've got it and loving them and looking after them as normal people. Rather than abandoning them to their fate and that was what was happening. And still is.

But I wanted to start the conversation and that’s why it was so important to appear on television and radio. Some people would come up to me on the street and it was very reassuring that the message was getting out there. That’s all I can do. I can’t find a cure, I can’t find lots of money. But I can tell people about it. I can say I've got it and I'm not cursed.

Exactly. The film has been made about me. The book describes the ups and downs quite a lot, because I wanted it to. In the UK, when people have got Parkinson's, you don't meet them because they lock themselves away. They don't go out because they dribble, they stoop, they can't make eye contact, they can't take make conversation, they’re socially inadequate, they can't get dressed. It's a horrible thing. And they'd rather not be there, so you don't get to meet them. So you never get to see them at their worst, unless you are married to them and live with them.

You genuinely don't want to have anything to do with anybody and you self-isolate. You cut yourself off from all the good things in life, and just sit there quietly, stewing in the corner waiting for it all to be over. That's how I feel. And I'm sure other people do and I bet they don't say it. In the UK we know quite a lot about Parkinson’s, but we don’t really know what it’s like for the people who have got it.

To be honest, I can't do what I used to be able to do. But now I’m pilled up, I’ve taken extra pills and I’m fine. You wouldn’t know I have anything, which again is part of the problem because when I’m out and about people say, “what’s he whinging about, he’s absolutely fine”.

I got malaria. I'm quite stubborn. I never thought I was stubborn, but I clearly am. I believe I can do things if I try hard enough, and I will keep going with things like malaria. Thank God, I was on a flight when it came on its worst and this chap walked past, I’d never met him before, and he asked if I was alright and I said “no, can you help me?”. He carried my bags in the airport in Lucata, Angola and I was met by somebody who put me in the car, took me and put me to bed and four days later, I was better again. It was incredible.

There are unbelievably kind people around and almost everybody is kind, almost all of the time, and it's very rare you meet people who are not and if they're not, you just walk away from them. We’re very kind and nice to each other, as a rule. We all respond to that request for help and we like to help people.  

You’d think I'd have a bottle of champagne in the fridge, and I could have done. But I didn't even have a beer. South Africa is actually pretty tame in relative terms to the rest of Africa. And it's very European, the roads are all good. And it's all very straightforward. Although the crime is dreadful, of course. So I thought, let's just get down to Cape Town. To make sure nothing else happens and get this trip done with, because I was getting quite tired. I was thin and feeble, so I just wanted to get there in one piece.

When I got there, I was all but in tears. I was deflated as well as elated at the same time. I arrived and the job was done. It was a 30-year mission, a 30-year dream over. I was wondering what happens next? And the answer is all this happens next. And there's a lot of it.

It’s a very romantic place, Africa. It’s full of the most charming, cheerful and happy people and there’s so much variety, fun, music and all the rest of the good things in life.

But there are people there who've got Parkinson's who are having a horrible time, but they can be loved and they can be given a voice.

I've got some footage of me driving across sand dunes in Namibia. That was fantastic. Angola was a delight. When I arrived there, people were so friendly and charming, and everything about Angola was counter to what people said it was like.

People were so keen to tell me how their country wasn't what we thought it was, and how the civil war ended 30 years ago, that they weren't killing each other anymore. Yeah, it was brilliant. And the scenery was fantastic. There were minefields around we didn't go to but it's wonderful.