"I used to work at the Greater London Council in computing, which is where I met Katy. This was back in 1970, when we used punch cards on a machine bigger than this room! It was a good time to be involved in computers because nobody knew very much – technology has changed a lot since then, show me a computer today and I wouldn’t have a clue!

Before I was diagnosed, I started getting occasional spasms in my hand, and went to get it checked out. There’s no particular test for MND; they basically rule out everything else. They thought it might be a trapped nerve, so I was having physio for that, and eventually the physio noticed something called fasciculations, which is a sort of tremor. It was so slight that I didn’t even notice. The physio sent me straight to the doctor and then the wheels were in motion for a range of tests. And finally, they diagnosed MND in January 2015.

Before my diagnosis, the holidays Katy and I went on were always getting out and about and walking about in the mountains, Greece, Italy, anywhere there were big hills! I used to row years ago, run, and cycle, but that’s slowly slipped away. The main thing I miss, though, is drumming, but I’ve slowly had to give that up. I love the feeling of playing in a band, and we used to play gigs for charity, which was great fun. I played up until 18 months ago and could just about manage it with elastic bands holding the drumsticks on my hands! So, it’s important for me to be able to get out and about by myself and be independent. I come to Trinity in my wheelchair by bus on my own. You have to plan ahead, be really careful and know where you’re going, but to have that independence, it’s worth it.

My mum had MND and so my case is genetic, although most cases, around 85%, are not. So although I didn’t spend my whole life worrying about it, there was always a slight niggle in my mind that it might affect me eventually. My mum died in St Christopher’s Hospice in 1983, so before I came to Trinity, I knew about hospices, but I wasn’t aware of this one. I didn’t realise then that there were other hospices like St Christopher’s.

When I was first diagnosed, I was immediately put in touch with Trinity, but I didn’t need anything then because, in the very early days, I wasn’t in a wheelchair; I just dealt with the odd spasm in my arm. I didn’t really have anything to do with Trinity until last year but up to that point, it was reassuring to know that Trinity could be there to provide help when I needed it. I’ve found that things like physiotherapy, occupational therapy and hospice specialists I’ve been introduced to can do something to help.

Later on, I was talking to a friend who also has MND, and he told me he’d been allocated a Palliative Care Nurse and I thought “I haven’t got one of them, I want one!”. I got in touch with someone at Kings’ MND unit, and Lydia, one of Trinity’s Palliative Care Nurses, visited me at home. We talked about all sorts of things and she suggested that I might benefit from physiotherapy. She also talked about the other services I could access, including a voice specialist who can help with speaking as your voice begins to fade, and an energy management specialist who gave me loads of advice on wheelchair use. With MND, your muscles are wasting, so the physio and everything she suggested seemed like a great idea.

As I understand it, people benefit from physiotherapy in different ways and Andrea here at Trinity has been great. I know it won’t reverse anything, but if it can keep my muscles going for longer, I can have a bit more of a normal life for longer, which is fine with me. It’s not just physical, it’s mental too – you’re not just sitting there, thinking, “I’m a bit worse than last week”.

In the past, I’ve had physios give me a range of exercises to do at home, and obviously now I can do less than I could before. It’s not quite the same sitting at home trying to remember the exercises compared to coming into the hospice gym and having someone help you do it. The other bonus that I wasn’t expecting from coming to Trinity for physio sessions is that my wife Katy has some time to herself while I’m out at my appointment. It’s respite for her; she can sit back and relax for a few hours.

I am quite involved with the organisation Dignity in Dying. For me, palliative care and Assisted Dying aren’t antagonistic. For me, the ultimate act of palliative care is an assisted death – I’m all for it. There’s a lot of false information about it in the press and there is a lot of opposition, which is a shame. I got involved before my diagnosis and Katy was co-chair of a local activist group but I’ve always felt this way about it. Before the vote last year, I was out in Parliament Square, campaigning and being interviewed there and ended up on Japanese television! I was relieved when the vote went through but the more I read about it, the more I wonder if they’re going to quash it. I know that whatever happens, it’s not going to affect me personally, but I really feel like it needs to be done.

If it wasn’t for physio at Trinity, I think I’d be a bit weaker. I struggle to do a lot of things now, but there might be more things that I couldn’t do which would put a bigger burden on Katy. And the whole place is great – everyone I have met has been really nice and wants to help. Even the building itself is such a great place to be and so uplifting.

I have been told that I might get some more assistance at home as I need it. I joined Dignitas years ago, but I’ve left it too late; I couldn’t travel there on my own now. So that has led me to have conversations with my Trinity nurse Lydia about coming into the hospice to die when the time comes. She’s explained to me what the care here looks like and what choices I have, which has helped me to make decisions. When the time comes, I can’t think of a better place for it to happen, because of the people and the place. I know that everyone’s on top of it and knows what to do and will be there for Katy."