Inherited motor neurone disease (MND)

But I’m also aware that I’ve got to be as positive as I can, because I want the children to have positive memories of MND, not the negative one that I had originally. Because God forbid if one day one of them develops it, I don’t want them to then think, “My life’s over.” I want them to remember that I’ve abseiled off a building with MND, I’ve met Cliff Richard with MND. I’ve done a lot of things that I would never have done previously. I’ve done the Great North Run. And I’ve tried to let - and we have a laugh. I try and - it’s the most important thing that life goes on, it’s not the end of the world, and try and give them as positive an outlook as I can.

I think really that… having MND isn’t the end of the world. There’s plenty of life to be enjoyed while you’re going through the process. Okay, so the end stages aren’t that pretty, but most of the lead-in, you can live your life. And with technology, particularly with eye gaze tablets, you can stay in touch, you have machines speak for you, it’s, that’s where the difference with my mother is really pronounced. I was, I’ve been loaned an eye gaze tablet, I’ve been practicing using it so if I can’t type in a keyboard or tap at an iPad, I can talk through a computer, watch films, read the news just with my eyes, which makes later stages less of a big issue.

Attitude to life, I just… yeah. Well, I think anybody with a terminal disease, who’s confronted with having a terminal disease, looks at things just so differently. It’s like people worry about stupid things that just don’t matter, you know? And so yes, I have, it has changed my attitude to life. Yeah, just you look at life through different eyes, which is good, you know? It’s good.

Has it changed like your priorities then, maybe? Or…

Yeah. And I listen to people moaning and groaning and think, “Oh, for god’s sake. Get on with it” [laughs]. But I’m very much a get on with it sort of person, maybe that’s a trait of being a Kiwi, I don’t know. But you know, don’t sit around too long moaning and groaning about what you can’t do, remember what you can do, and you know, make memories and… oh, I’ve been on a cruise up to the Northern Lights, that was in my wheelchair. There’s lots you can do. A lot of people don’t have enough time when they’ve got a terminal disease, to get it all in. I’ve been really lucky. I was very lucky to get on this trial.

Yeah, I’m, I was brought up Church of England and was in the church choir. And that was a very strong - my parents have both got very strong faiths. But I don’t, that doesn’t really do it for me. It’s really more a, yeah, I’m much more neutral, I think. But I do think that it sort of, having the illness and doing the course has made me think about life and what life means. And what, I kind of get things in perspective and that, although I’ve got a very obvious illness and obvious baggage to carry around, everybody has in some way, whether it’s emotionally and something, or something that doesn’t have a label on it, or whether people are, you know, do have an illness. You know, everybody’s got something. And that in turn allows you to see what is rich about life. So, if you didn’t have death, you didn’t have disease, then you wouldn’t quite see the richness of life either. And that helps me, yeah. As a bigger picture, that helps me. And the smaller things, when I can’t reach things or I just can’t do things, that doesn’t really help me [laughs]. That’s just bloody frustrating. But there’s a bigger picture, yeah, and that gives me calm.

But you know, if you have a, some sort of terminal disease, don’t think it’s going to kill you straightaway, and it’s not suddenly appeared and suddenly you’re dead, it’s progressive and there are things we can do that might slow its progress. And other things we can do like drinking two, work it out, three pints of extremely strong cider don’t help us [laughs]. So you know, make your choices and live with the consequences and don’t just think, “This is a terminal disease, woe is me, I’m going to fall over and die”. Keep challenging it, you know.

I keep challenging myself to go back on my exercise bike and rowing machine and cycle, you know, and I’m resisting getting an electric, an electric bike. My wife’s saying, “Buy an electric bike”, “No, if I can pedal, I’ll pedal as long as I can”. So, it’s just I think… but we all respond differently, but I would just encourage people, don’t fall over and think, “That’s it”, and collapse and spend the rest of your life in bed, try and find something in you to say, “As long as I can, I will keep going”.

For a start, I hadn’t planned to retire as early as I have done. I had planned to go a bit longer with the vision of supporting my daughter through university for a bit longer, save up some more money and to go on walking holidays because I’ve done one of those in the past. I’ve retired earlier than I would have liked to, because I was, before I got this disease I was feeling invincible and I could go for another five years, but luckily I’d stayed on the pension that allowed me to retire at 55.

It’s challenged how I see myself and it’s made me have to re-think who I am… When you’ve been, like I have just been, all my life I’ve just been able to do whatever I want to do. I don’t mean because I’m rich or anything, just if I want to learn a new skill, [clicks fingers] learn a new skill, easy, you know, anything. I wanted to, I thought I’d learn how to kayak aged 50, went on a course and learnt how to kayak, learnt how to roll the kayak, learnt how to control it, it’s great. I had planned to learn how to sail, you can’t tie knots, you know, so I’ll find somewhere, someone who’s got a yacht that’s adapted for disabled people and I’ll go sailing.

So I still try and cling on to bits that form my identity while I still can, accepting that I won’t be able to. So then who am I? Well I’m an argumentative, challenging person who wants to make things happen. I can still do that while I can still talk. When I can’t talk, my mum could still communicate what she wanted, so yeah, I could still communicate what I want. It’s how can I live without being too much of a burden on the people around me? I don’t think they quite yet understand fully what is coming.

I had looked into getting an electric bike, but I couldn’t kind of keep my, well whenever I put my foot down, it was liable to kind of give way and I’d end up on the ground with the bike on top of me. So I got an electric tricycle which, which kind of kept me mobile through the autumn and winter of 2019-20, and then got an electric, an all-terrain mobility scooter, which allows me to kind of, you know, again go considerable distances and up into the hills, and generally get on with doing the things I enjoy, albeit with a certain amount of constraint. 

And I got a mobility vehicle, a Berlingo with a ramp that I could get the tricycle and then the scooter into. So I’ve been able to kind of keep mobile, until September when basically the weakness in my legs developed to the extent that I could no longer handle the ramp and didn’t really feel safe driving the car, either. So I’ve now bought a van with a lift and hand controls, which I’m struggling to get used to. But yeah, in the hope that I will kind of keep mobile for as long as possible, keep getting out there, yeah. But increasingly, it does feel like just having MND and trying to, as I say, keep mobile and independent has almost become a full-time job in itself.

The biggest frustration was that the places I like to go with my, with my electric tricycle, what I really loved to do, I had an engineer friend increase its capability so it could go a bit faster than it was kind of set to do. I loved to take it up the coast and then take it on to the beach at low tide and go whizzing along at 25 miles an hour on the sand, it was just so exhilarating, made me feel really alive. I never found out who – the police or the county council or the local farmers – blocked all the car parks along the coast so you couldn’t get there, you know? It felt so unnecessary, you know?