When Martyn's wife Anna was diagnosed with MND in 2023 at just 39 years old, their world was crushed. Here, Martyn emphasises the importance of maintaining normalcy in their lives and the support they receive whilst highlighting the financial and emotional toll of caring.
Life before MND
"We met when we were 16 or 17 years old, I asked her out on a date, and I've never looked back."
I'm Martyn. I turned 40 in January, so still quite young. Me and Anna were very young when we had our kids, got married and bought a house, so family is my main priority. We met when we were 16 or 17 years old, I asked her out on a date, and I've never looked back. We've got three daughters, and they keep me very busy. Everything with Anna and I, has always revolved around family. After the girls were born Anna spent a bit of time reevaluating what she wanted to do. She moved into health and social care by working in care homes and then started working for Trafford Borough Council for over 10 years as a social worker and team leader, she loved her job, absolutely loved it. Prior to MND, we both had really good social lives.
Early symptoms and diagnosis
"First thing that came to mind was the girls."
We went through lockdown, and we always say as a family, we loved it. We were all at home together and in the garden. We love each other's company. It was over a period of time Anna's symptoms started. It was after her third booster jab in February 2022 her symptoms started. The doctor said it was down to the injection being too high in her arm causing a loss of use in her left arm, and it would go away. So, we waited, and it started to get worse. Going into the start of 2023 Anna was referred to neurology for some tests as urgent. They came back and said it wasn't urgent and put her on a 70-week waiting list. So, we just went on with life, and then Anna was working one day at home, and she had a panic attack. We went to the hospital, and it was only because the nurse said Anna had a bit of slurred speech, they decided they wanted to do some tests. They kept her in for two weeks and did multiple tests, and it was the last test, the EMG that confirmed it. Just before the Kings coronation - the Thursday before - they called us into a meeting and told us Anna was diagnosed with MND. We got told, we cried for about an hour. First thing that came to mind was the girls. We're always open and honest with the girls, so we told them straight away. We said that we wanted to rip the plaster off. We're a very positive family. That's how we've always done things, but that was one of the worst days of our lives. The Kings Coronation weekend was just full of tears and from there, we started to process it.
Adapting to MND
"You need to get things done and get it done quickly."
One of the things we said to the girls at the start was we're not all going to be in sync, we’re never going to be feeling the same way all the time. But we make sure when they do feel like that, we are open enough so they can tell us they aren’t having a good day. There might be a day where we’re happy and we're laughing and joking, but one of my daughters might be feeling really down and she doesn't want to say anything because she doesn't want to bring the mood down for others.
You need to get things done and get it done quickly. Because the moment you do something, it quickly becomes out of date. My priority is Anna and what she needs. From January to April, there's been a gradual change and things have stopped being needed, but we need more things and it's trying to have everything done before you need it.
Engaging council support
"My main concern is we can't go into another winter with what we're doing now."
We live in a three-bedroom house. We had an assessment for a through-the-floor lift, but it wasn't practical. We had a battle and a challenge. That was back in July 2022, we got to December, and we'd heard nothing. I emailed the mayor of Salford and got a reply the next day. We had a meeting scheduled with the Deputy Mayor of Salford who is the head of Adult Social Care for Salford, and I talked them through Anna's journey. I told them about MND, Anna's journey and where we're up to today, the lack of communication from the council and the need to act. It's only now in the past two months since we had that meeting, we have been assigned a social worker and we've had drawings complete. My main concern is that we can't go into another winter with what we're doing now. We have a little laugh and a joke that I can walk through my house backwards. I've got used to it that much now by holding on to Anna's hands. Our home has been our home since 2004. It's the only house the kids have ever lived in. I want it to be as free for Anna to do what she wants when she wants. I don't believe anyone in that situation should be thinking about the financial burden.
Caring for MND
"Everyone in the house and across our wider family has caring responsibilities."
Everything I do and every decision I make now, it's not about us, it's about Anna. Her best interests, what she wants, how she wants things to happen. She's our priority now. Unfortunately, the kids become an element of care and support for Anna. It's not full time, but everyone in the house and across our wider family has caring responsibilities. They're all carers in some way. We have tried to limit that as a family because Anna doesn't want more carers in life. Her dad, mum, sister or aunties or friends, she doesn't want them to be carers. She just wants them to be family members. I pretty much do everything for Anna because we have our routines. She doesn't need to tell me to do anything. It's like a military operation. We’re just so in sync it falls into place. We've got a bit of a routine going now and, as her carer, I'm planning my day around Anna and making sure she's got what she needs before I think about doing anything else.
Association support
"The MND Association are a charity put together to help people with MND."
The MND association for me has been fantastic. I got some information, it wasn't forced upon me, it was “We're here when you need us. When you're ready, we’re here.” It's about someone to talk to, the branch meetings are good, we’ve attended a few of them, but it's the volunteers for me. The MND Association are a charity put together to help people with MND. I think in my area, almost every person is a volunteer, they're all volunteers giving their time to help others, and I like that. A lot of volunteers who work for the MND Association have a lived experience of MND. The MND Association paid for a rise and recline chair for Anna. We mentioned that we were looking at going on a holiday last year and we were advised to apply for the children and young person’s grant, and we got the grant for the kids, which was great and paid for their plane ticket. We've had a couple of grants from the Association, which has been great. But more than anything, I know if I do need anything, all I need to do is pick up the phone. The MND Association have helped me with advice or recommendations. It's been a fantastic experience so far. I'd advocate to anyone just to pick up the phone, reach out to your local branch and just make contact because once you've made contact with them, you can always say it's not for me.
Advice for other carers
"I believe there's a big movement at the minute of raising awareness for MND."
I always look at it as three main things. Being well informed with healthcare, being well informed with social care, what that can entail and how to move things forward, and the third one is charity and community. With the healthcare side, you need to be well informed about healthcare and MND, and what that could look like. We're in a couple of community groups on Facebook because I always look at peer support. Carers, especially in the MND world, need to speak more and offer recommendations and help each other. I believe there's a big movement at the minute of raising awareness for MND and raising awareness for carers and that’s absolutely amazing. Sharing more of the good stuff and tips around what's working and what's helping. That's something that I'm always trying to learn, go with the flow and adapt. And as things change, you find your own way to do things.