Stuart has motor neurone disease. He first noticed symptoms in March 2021 with his hands losing strength. This didn’t stop him climbing Snowdon to watch the sunrise on the summer solstice. He was diagnosed in December and gave up his job as a gardener and handyman at a care home. Stuart attends our Day Therapy. Maggie is his wife and carer. Here’s their SundayStory
Maggie: “It’s a very hard disease to come to terms with particularly for someone like Stuart who has always been extremely fit and active.
“I know he used to feel that, if you keep fit and your muscles moving, then you’re going to get better. But it isn’t going to get better. It doesn’t matter whether you use them or not.
“There’s no rehabilitation from this and it’s hard to adjust to that.”
“The cruelness of the disease is that it goes against everything you believe. He’s pushed himself to the limits physically, running marathons, long distance walking, which has worked well for him up until now.
“Being so fit has helped him carry on longer than other people would have with MND.”
Stuart: “I now use a neater eater, but it’s starting to get harder to use. My head is starting to tip forward.
Maggie: “He’s sleeping downstairs now as he can’t manage stairs. We have an emergency alarm because I can’t hear him when he calls out. His voice isn’t strong enough for me to hear. It is a worry.
Stuart: “I do think what if something happened to Maggie? I can’t get out of bed, I can’t use the phone. I can’t roll over. It worries me.”
Maggie: “I can’t believe how much thinking through everything needs now. I’ve never thought of the role of a carer before. My mum died of cancer at home and I spent the last few days with her. But this day to day caring, it’s so hard. I wouldn’t have it any other way. But it’s so draining.
Stuart: “It’s hard on Maggie. It doesn’t matter what I do, I need help. I used to do most of the cooking but now I can’t even butter a slice of bread. So Maggie’s got to do all the cooking too as well, shopping as well. It’s totally exhausting. I really feel for Maggie because she needs to rest and she’s up in the night as well. I feel guilty asking her to do things.
“Every time she opens the curtains I see these roses in the front garden that need dead heading, and I remind her about it just as she sits down. I don’t mean to.
Maggie: “At the moment he’s got a problem with his skin and he can’t scratch it so he asks me to. I can’t imagine what it’s like to have an itch that you can’t scratch and you have to ask someone to help. It’s must be so awful…”
Stuart: “For me, I’ve spent a lot of time on my own in my life. The hardest thing for me is not being able to do anything. I lie in bed in the morning making plans for all the things I could do. Then I realise I can’t do any of it.
“They rang me from Day Therapy at LOROS and said did I want to come along as they had a few spaces. I was tired, I was a bit fed up. I wasn’t sure I wanted to go…”
Maggie: “I brought him here and it was like bringing a child to school on the first day. There were tears. He was really miserable. I used to be an infant teacher and I have seen many a mum hanging around, and I thought ‘just get out the way! They’ll be fine when you’re gone!’ I knew I’d have to take the same approach so I left him with Bethany who I think could see we were in a bad place.
“At 3pm I thought, what am I going to come back to? He’d only gone and had the best day ever! It was like coming back to a different person.”
Stuart: “Yes, I had a really nice day. I spoke to lots of different people. Had a walk around. Just to get out somewhere different was brilliant.
Maggie: “Just coming here, seeing different four walls, it’s like a paradise. It gives me a bit of a break. It’s so nice I don’t have to be in control all the time. At LOROS people know what his problems are. I can sometimes leave it for someone else to do. I can be grandma again.
“Especially when he’s here, I can stop thinking about him because I know he’s being looked after. He’s having a good time and he’s having food and I know all that’s being catered for and that makes such a massive difference to me.
“When he’s here I rush around getting everything done that I can’t get done when he’s with me. The car’s goes to the garage. Take the dog out, get some bread and salad and it’s 3 o’ clock far too quickly!
“Stuart has lots of friends who visit him and I used to use that time to go out to walk the dog but now he can’t get to the toilet, it’s harder to ask people. So the dog gets much shorter walks.
“My friends will bring food round which makes a big difference when you’ve got everything to do. Stuart is a far, far better cook than me and he used to cook everything from scratch. So we have a lot of jacket potatoes and salad!
Stuart: “We do! You’ve got to still laugh. I’ve had a good life. We didn’t get married until much later. I’ve always done everything at my own pace. I’ve travelled heaps. I’ve lived and worked in 8 different countries and I’ve probably been to another 45. I’ve done what I wanted to do, I’ve never been tied to my job. I’ve never really had any commitments.”
Maggie: “I think that’s why it’s so cruel. All your freedom has been taken away.”
Stuart “I’m fully aware of what’s happening but I can’t do anything. The body’s given up but the head hasn’t. That is sometimes so hard. I do get a bit teary sometimes.”
Maggie: “We’ve tried to just carry on and, because Stuart is still Stuart, people don’t realise how the disease has affected him. His determination means people haven’t realised quite what’s going on.”
Stuart: “It is what it is. It’s pointless beating yourself up about it.”
Maggie: “He has never ever gone down the self-pity route. From someone who relied on his body so much. He could do anything. If you were stuck on a desert island he’d be your man.”
Stuart: “I was dyslexic and didn’t do very well at school but I can figure things out. I lived in Africa for 17 years and in the bush some of that time, so there was no supermarket down the road. You’ve got to work it out! You’ve got to get on and do it.
“We decided early on, let’s focus on the things we can do, not focus on the things we can’t do. We just get on with it and accept it. It’s the only way I can deal with it.”
