British ex-colonel with Parkinson’s says Africans erroneously see disease as a curse

Retired colonel of the British army Guy Deacon, who was diagnosed of Parkinson’s disease in 2011, has been on a road trip across Africa since 2019 to draw awareness to the disease which is a brain disorder that causes unintended or uncontrollable movements, such as shaking, stiffness, and difficulty with balance and coordination. Deacon is driving alone, encountering several challenges on the road amongst them logistics and security. But he continues to dare. When he arrived Yaounde on July 13, after his vehicle break down in the north near the Cameroon/Nigeria border, NewsWatch’s Ndi Eugene Ndi caught up with him and began by asking him to self-introduce.

Read on…

My name is Guy Deacon and I am a recently retired colonel of the British Army. I left the army in 2019 and the very next month I set off on this journey to South Africa. Some people would think it is a bit strange but I have been dreaming of doing this trip since I was a young officer when I first joined the army. Since that day, 35 years ago I said when I had some the time, I will complete this trip whatever happens. But I was diagnosed with Parkinson’s in 2011 which is normally for some people very bad news. And it is not good news for me either.

But I wasn’t going to let Parkinson’s stop me living my dream. I had this plan and I was going to do it, however difficult it was. I have to say when I started in 2019, I was fitter then than I am now so it was easier and I went through Europe first which was easier as well. But when I got to Sierra Leone, I had to go back home because of Covid and there was a two-year gap before I came back and started the journey again. In that two years I have got much weaker and it is much more difficult than I thought it would be because three things happened. Firstly, I have gotten two years older and weaker. Secondly, I arrived in Sierra Leone in March when it was hot and so I didn’t reacclimatize and suddenly I was very hot and sweaty. Thirdly, I didn’t have the simplicity of Europe.

I was straight into the hot bed of Sierra Leone and the confusion of Freetown and the complications of borders and all the things that are difficult in Africa. I didn’t have the time to build up slowly. If you can imagine I was suddenly thrown into the deep end. And my ambition to do the journey alone, and much of the journey I have done by myself, has become almost too challenging because I now know that I can’t do things I used to be able to do two years ago and I do need help doing them, so travelling by myself is very difficult.

You said you started in 2019 and now you are weaker than you were. So, what keeps you moving? What is your motivation?

It is pride. I am stubborn and I have told so many people I am going to do this and so I am not going to let myself down. I can’t embarrass myself so I have to do it. That is the first motivation. When I was back in the UK for those two years, I met two people who were influential. One was Omotola Thomas who set up Parkinson’s Africa and she told me the story of Parkinson’s Africa. And in fact there was little known about it and we needed to expose it to more people and there needed to be a big discussion about it. That fired me up. Secondly, I met Rob Hayward. He was a film maker.

He said ‘I’d like to make a film of what you are doing because the story is very interesting on three counts. First of all, it is interesting because the Parkinson’s story in Africa is interesting in its own right; there is a lot that people don’t know. Secondly, I am traveling through some beautiful countries that a lot of people in the UK don’t know. Everybody knows Kenya, South Africa, Zimbabwe, Zambia, but very few know Cameroon. They know Ghana a bit and Nigeria but they don’t know Cote D’Ivoire, Benin Togo and Sierra Leone. They don’t know Mauritania and Guinea. And I have been going to these countries and talking about what they are like, so it is a travel log.

Thirdly, I want to demonstrate what it is like for me to have Parkinson’s. People who have already got Parkinson’s can associate what I am feeling and I am going to be honest with the camera and not be afraid to say I am feeling bad today because of whatever has happened. And I am going to be honest about my mental state because even in England where I live people don’t talk about how they feel. Everybody thinks they know what Parkinson’s is like because they can see it but they don’t know how we feel. Much of the time we feel very unhappy and demeaned because we can’t eat properly, get dressed properly and we’d much rather just lock ourselves away and not see anybody because it is easier to be by yourself rather than dribbling in public or not being able to eat and do things. It is easy to sit back away and go to a dark corner and just stop living normally.

That is a very sad thing. There are many people who just literally sit in a chair because they can’t move and they don’t try and they give up on life because that is what it does. I can feel that myself. When the pills don’t work I just lie down and want the earth to open up and swallow me because I can’t do anything. People ask you questions and you can’t answer them. People want you to do things you can’t do. All sorts of things go wrong and you just wish it would just stop. That is something we need to talk about. I have said this to many people and I don’t mind saying it publicly. If I was knocked down by a bus or lorry tomorrow, I wouldn’t mind.

I won’t jump in front of it. I’m not suicidal; but the future for me is not very bright because I know I’m going to get worse and my condition will get worse and I’ll be able to see less and less and it becomes much more frustrating and soon I won’t be able to talk very well or hold things or do anything and that is not a very interesting prospect. So therefore, you have to live everyday as the most important day and you have to make the most of it. Otherwise, you just drift down very quickly and you have got to fight that.

Besides moving through these African countries which many people in England don’t know, have you met some other people that have the same condition like you and what have you told them?

Yes I have. In Ghana, Nigeria and Cote D’Ivoire, I have met people with Parkinson’s and Liberia too. The situation is the same as me but they don’t have the access to medicines I have got. I’ve got a box full of medicines for my journey and people here have nothing. I actually have more medicine in my bag for me than exists in some countries like Benin or Togo because I am very lucky. I am from England where there is national health.

Seeing these people who have the same problem I got but less help and less people understanding and less facilities to make their lives easier is a very sad thing and you look at them and think ‘I wish I could do something to help’. That is what I’m trying to do. I’m trying to raise awareness because when the people know that there is somebody in their village with Parkinson’s, they just think he is a mad man. They don’t think he has got a problem. They don’t know he’s got Parkinson’s, he’s got not enough dopamine in his body and it’s not his fault.

He is the same person inside. He is a sane person struggling with the condition. We must be kind and help him rather than shun him and treat him as a pariah,because it is a straightforward neurological condition. There is no magic, it’s not contagious, and he can’t do any harm. It is not his fault and he is not cursed he is just an unlucky person and he needs love and attention and help. That is the message.

In Africa we believe there is witchcraft. Have you by any chance heard people talking about Parkinson’s related to witchcraft?

Yes, even Omotola who runs Parkinson’s Africa. When she was young and was diagnosed, people thought she was cursed by witchcraft. Even she thought she was cursed then. When she realised it was just a neurological condition, she said ‘I am going to tell these people it is not witchcraft it is lack of dopamine’. It is very simple. If we had the right amount of dopamine the same as everybody else. I have done nothing wrong to deserve it.

It’s just that is the way it is. It is normally associated with old age. Everybody starts to get less dopamine as they get older but for me, I was 50, still very young. And some people even younger than that. And they are the ones I am most worried about because they have a long time to live in this rather crippling condition where they can’t do very much and they need help and care because they are normal; people who are trying to survive and go through life normally. They are the people who need the most help and understanding.

Is the society treating them the way the society in London is treating you?

Even in England people don’t really understand what it is like. They see me shuffling because I walk in a certain way. I stoop and I mumble and even some people there think there is something wrong with me. They don’t just say he’s got Parkinson’s. They think he is a mad man, he is drunk. Even in England that happens and people don’t understand that actually I’m just a normal person who can’t do what I used to be able to do.

When I’m queuing in a shop it takes me a long time to take my money out of my pocket and people often get bored waiting and I have to turn around and say I’m sorry, I can’t get it any faster. But I feel horrible. It is an awful thing because you know the whole world is getting impatient and bored with you. But if you are trying to walk down the street you bump into people because you can’t steer around them. Your balance isn’t very good. If I join a queue at a shop. I can’t stop. I bump into them which is very embarrassing. They get cross and I say I’m sorry, it was an accident. They don’t understand how somebody cannot just stand still.

But I can’t stand still for a long period of time or I will fall over, so I have to keep walking in circles. Or if you talk to me when I face the other way I can’t turn round and talk to you so my back is turned to you and I seem ungrateful and disinterested. It is because I can’t turn around very easily. It is things like that which people don’t understand. I’m not doing it because I’m rude. I’m doing it because I can’t turn around, I can’t move. It is the same for everybody with Parkinson’s, they have the same issues. People feel it is just me being rude, unkind, unpleasant and unappreciative, it is not the case. I just can’t do it.

When you explain your situation one has a feeling you can’t drive but we understand you are driving yourself through this solo trip. How do you go about it?

I can drive because I have good times and bad times. When I’m driving, I’m sitting down. All I do is hold on to the steering wheel and move my feet a bit and I can do that. But the minute I start to feel tired or feel my concentration is going, I stop. So every journey I do takes three or four times longer because I stop regularly. I take more pills and lie on the floor. Literally, I get out of the car and I lie on the grass, and wait for myself to feel better and get in the car and off I go. Travelling by myself is more difficult. I have a couple of golden rules.

One of them is never to get into a city late in the evening when it is getting dark and traffic is bad because you have to map read and get to where you’ve never been before and traffic is always difficult. But invariably because I am much tired in the day than in the evening it makes me really crossed. The one thing I can’t respond well to is stress. If I am stressed, I get weak very quickly so I just stop and lay by and wait. That is why when people expect me to be here by lunch time and I arrive in the evening and say I’m very sorry. That is the way it is. It will just take me longer than everyone else. And I try and cover much of that time by leaving much earlier but everything I do just takes three or four times normal.

Besides driving, how do you manage to eat? What is the experience like?

Everybody tells me I don’t eat enough, and I don’t eat enough. The reason is because I can’t. Like using your hands to eat and I can’t cut food up so cooking is difficult so I tend to eat on the roadside. Or I call in restaurant and have omelettes and everything that is made locally. That way I don’t have to cook myself because I’ve got to wash up afterwards. So it’s easy. The van is quite good and I sleep in the van very easily.

The roof goes up so I sleep in that. But I spend one or two nights in a hotel so I can have a proper wash. That is how I normally live. But for the moment my van is broken because as you will know the road from Gembou up in the border to Banyo in the North is very difficult and my car had a bit of a problem and I had to be towed all the way to Banyo and then all the way from Banyo in the back of a lorry to here [Yaounde]. My poor van is in bad condition at the moment.

How do you intend continuing your journey?

I’m getting the part sent out to me here and then getting it mended. I’m going to carry on when it’s mended which will take 10 days or so hopefully. It is part of the challenge. To be honest I’m surprised it hasn’t happened before. The roads in this country can be very difficult and I have already been through some difficult country roads in Nigeria and through the desert in the Sahara so anything is very punishing and that is the challenge.

Have you had that challenge before. When you started the trip have you had a situation where you had the breakdown of your van or it’s the first time it’s happening?

This is the second time it is happening. Last time, it was in Cote d’Ivoire which was very awkward because they all speak French there all the time. I didn’t know a single person there in Cote d’Ivoire when it broke down. But there is a French family whom I met the night before in the restaurant and got to chat with them. They drove past me and towed me to the garage. The thing is when you are by yourself people are very sympathetic and happy to help you.

It might be part of the Muslim tradition to look after travellers. But I have never been left alone for more than a few days. People have always been helpful and I don’t think that will happen to somebody else. I’ve been to people’s houses. I’ve been fed and accommodated by people. All the way through people have been incredibly kind. When they know that I’m not well, they are even kinder still. And people who have got nothing have given me everything and I’ve felt very humbled by the experience. It has been an extraordinary experience and discovery.

The people I met on this journey have been so friendly, cheerful and supportive and the words I’ve heard, the encouragement from people, I have never heard before. So it is incredible. In some ways this journey for me is almost the most important thing I have done in my life because I have just seen so many people and people have been so kind and so generous and supportive which I would never have done it if I was traveling with somebody else or haven’t travelled at all. It is an amazing experience.

We understand that by the end of this trip you’ll be producing a documentary. Can you tell us about that?

Yes, I met a film maker when I was back in England and he saw some of the films I had taken so far and he said it is a great story. He has been out with me so far in Sierra Leone and Nigeria and filmed me doing some of my travelling and meeting people with Parkinson’s. He is coming to Gabon next where there are some interesting things in the jungle such as herbal medicines so we have to look at that. He is a very good friend and the film is hopefully going to be shown on the BBC or ITV or worldwide but the aim is for it to be seen by as many people as possible.

We are not trying to make a profit. Any money we do make goes to the Parkinson’s charity in the UK who are trying to find a cure or look after Parkinson’s Africa. The film will explain to people what it is like for me to have Parkinson’s so people of North America and Europe can say ‘I didn’t know my father or mother was feeling that way or suicidal. I didn’t know that the reason they were sitting in the chair wishing they go away is because they are actually having a horrible time and can’t do anything. By exposing that and talking about it which we never do. In England when people say ‘how are you, we say I am well thank you’.

We never say I am ill and really having a horrible time. Without being too morbid and boring about it I want to be able to turn around and say I am having a horrible time because people need to know. Otherwise we mask it and people don’t know the truth. Everybody worries about other things but people don’t understand about Parkinson’s because it comes very slowly and it creeps up on you in a way that you can’t accommodate it. You make a provision for it and suddenly life becomes difficult then you may have other diseases and problems as well.

But I’m making sure people understand exactly what people like me are going through so they understand those who are in their own families. I don’t have all the answers and solutions. My condition is the same as other people, more or less. But people just need to know the way I feel and I’m coping and what I’m trying to do because that will hopefully incentivise those people who have got Parkinson’s or educate people who look after people with Parkinson’s and that is the aim.

Just to wrap up. So you say those who have Parkinson in Africa think they are cursed or think that they are regarded as cursed. You say it is not a curse but a normal condition …?

Not all of Africa but parts of it. But it is absolutely not a curse. Ofcourse it is not. In all of us, dopamine levels drop as we get older and that is normal. You can go down to about half as much as you should have and you are completely normal. I’m down to about a quarter of what I should have and the drugs replicate the dopamine in some ways and make the receptors more receiving of what is left. But it is like running out of tank of petrol.

If your tank is full you can carry on. Ifyour tank is half full you can carry on. If your tank is a quarter full you have to be a bit careful. If you are down to 10% you drive very carefully. It is the same thing with me. It is just dopamine not petrol.

Before I go, let me ask this question about security, if you are comfortable. Both Nigeria and Cameroon are regarded especially by the West and it is a reality, as very unsafe, especially for foreigners like you. Where did you take the courage and how do you manage your security on your trip?

The first thing is this, and I have kind of said this before, it’s kind of true. I don’t consider myself to be worth attacking. If things go wrong then I have nothing worth worrying about anyway. Secondly, my life is getting worse so what happens at the end of the day will happen. Nigeria was the country that worried me the most and has a very bad reputation; even Zain Asher from CNN said she wouldn’t do it and she is from Nigeria. But Nigeria is full of Nigerians. You are not telling me every single Nigerian is a bad person. Of course not.

The chances of meeting the bad ones are very rare. Maybe one in a hundred are bad and they could be unkind. But that means 99 of them are good so the odds are pretty good in my favour. Even the bad people are not bad all the time. I spent time in the Congo with rebels, people who had killed their brothers and sisters and friends and were involved in all sorts of unpleasant experiences in the Congo. But even there, if you treat them nicely and with respect they feel actually quite friendly and fun to be with. Although I didn’t quite trust them. But even bad people are good most of the time. If you recognise that and treat them with respect and don’t behave stupidly and don’t go the way you shouldn’t go, there is no reason why you shouldn’t survive quite happily.

After all, that is what most Nigerians do. Coming across the border I met wonderful people all the way through. And I know there is Boko Haram in the North and separatists in the South but I never felt threatened by anybody I saw. People were always friendly and always helpful. And I’ve been to Afghanistan and places like that where people are much more threatening. And here people are incredibly kind. And if I’m unlucky enough to have everything stolen – so it gets stolen, its only stuff. It doesn’t matter.

Any concluding words?
There are help groups around, there is one in Cameroon as you know. Parkinson’s Africa has a website you need to be aware of. They are trying to do something about it. They are trying to support people who’ve got it. Not provide drugs because that is the doctor’s job but to make people aware of it and help them make decisions about their lifestyles and for their families to understand that they are not alone. The stigma is a really bad thing.

If we can crack that, that will make people’s lives better because having Parkinson’s is bad enough. Being excluded by family and friends and society must just be absolute hell and you would rather be dead than living in that condition. That is what is so bad about it.

Thank you very much for your time and good luck Guy.

You are welcome.