Motor neurone disease hits you like a brick – it’s the loss of the future you thought you had

CORINNE Watson was 42 when she was diagnosed with MND.

Now dependent on an app to communicate, Corinne and husband Paul, 44, from Cumbria, reveal how they are making the most of every moment they have left together.

Paul says: “I will never forget the day Corinne and I went to the hospital for her test results.

She was terrified, but I reassured her she was only 42 and fighting fit. When we sat down in the specialist’s office, he cut to the chase: ‘I’m sorry to say you have motor neurone disease [MND].’

I fell apart, but Corinne sat there silently.

She’d suspected that her speech slurring was due to the same incurable neurological illness that rugby star Rob Burrow had, while I’d refused to contemplate losing the most intelligent, caring, adventurous, full-of-life person I knew.

Corinne and I met in 1997 at secondary school and became an item straight away.

We both went to Salford University, then got married in 2005, before having our sons, Lucas in 2010 and Leo in 2014.

Life was busy and happy, with my job in HR and Corinne working for the local government, and we had what we thought was an amazing future ahead as a family.

We first noticed Corinne was slurring in spring 2021, but didn’t think much about it.

She was super-fit and healthy, running half-marathons, with a pin-sharp mind. But as the months went by, the slurring got worse.

Finally, on that cold morning in November 2022, tests confirmed our worst fears.

It hits you like a brick – the loss of all those years you thought you’d have together.

Watching our boys grow up and the adventures we’d go on. After brief talks with the consultant and nurses, we walked silently out of the hospital, then Corinne broke down.

Although we didn’t know how quickly the MND would progress, there was only one possible outcome. Leo was eight then, and Lucas 12.

They knew Mummy hadn’t been well, and when we told them, Lucas said: ‘You’re not going to die, are you Mum?’ She replied: ‘Yes, I’m sorry’.

It was upsetting, but he had to know the truth. Leo just carried on playing with his Lego – even now, he doesn’t like talking about it, but they’ve both had incredible support from their schools.

The doctor advised packing in as much as we could in the next 12 months. So, that Christmas we took the boys to New York, then Rhodes the next summer, Sorrento in the autumn, as well as lots of UK breaks.

But going abroad became increasingly tricky as Corinne’s condition worsened, and we realised we didn’t have to fly halfway across the world to spend time together.

Meanwhile, our family, friends and community rallied round. At the start of 2023, my sister-in-law Liz set up a JustGiving page, hoping to raise £5,000 for research into MND.

After smiling all the way up, she burst into tears at the sense of achievement combined with the harsh reality

Paul Watson

This kick-started our fund-raising, which included marathons, sponsored walks and climbing England’s sixth-highest peak last June.

The weather that day was far from ideal, with wind, rain and fog, but Corinne insisted on joining us. By then, her MND was affecting her walking and she was losing weight, but she was determined.

I don’t know how she did it, and at the top I took a photo of her, which says it all. After smiling all the way up, she burst into tears at the sense of achievement combined with the harsh reality – just a year before, she’d have run up that mountain.

Afterwards, she posted on Facebook: ‘When life gives you lemons, if you’re lucky, your amazing family and friends get together to make lemonade’, and that’s spot-on.

So far, we’ve raised nearly £40,000, and Corinne says every pound is a symbol of love for all of us.

She now relies on a wheelchair to get around, but she’s determined to be there for things like the boys’ sports days.

She also has problems swallowing, and it’s hard to understand her, which is awful for her.

She’s almost completely reliant on a text-to-speak app and suffers from oesophageal spasms several times a week, which can be distressing, as she seems to choke.

I have dark moments, but I have to get through them because we can’t not keep going – no matter how hard it is for me, it’s nothing compared to what Corinne is going through.

I’ve done my best to hide my emotions, but I’m sure she senses my fear and anger.

It might sound naff, but there’s a great quote from Rocky Balboa, when Sylvester Stallone says: ‘It’s not about how hard you hit, it’s about how hard you can get hit and keep moving forwards.’ This sums us up perfectly – our ability to keep going.”

Corinne says: “When I received my diagnosis, all I could think about were the boys – how would we tell them? And how would they cope losing their mum?

That one never gets any easier. MND is terrifying. You are utterly helpless to stop the total breakdown of your body. There’s no medicine, no treatment, no tools to help you fight it.

In the 20 months since my diagnosis, I have gone from being a very active mum to using a wheelchair. I can’t cook or drive and need help with basic tasks.

Paul is effectively my full-time carer, along with his mum Anne. I can choke on food and have had some pretty epic falls. But the most devastating thing is not being the mum I used to be.

We can’t chat about Lego, friends or school, and it’s hard to help with homework. I can’t tell the boys off – which, secretly, they love! But, despite all this, life goes on.

Paul works, the kids go to school and their clubs, and jobs need doing. We still manage to have movie nights together, picnics and short walks with our dog Marley.

In May this year, we found out we’d been nominated for a JustGiving award and were over the moon. It was wonderful to see our amazing group being celebrated – but Team Corinne is more than that.

It’s the family members who do housework and meal drops. It’s also my colleagues who made so many adaptations to allow me to continue working for so long – I only stopped earlier this year, which was gutting because I loved my job.

And it’s the friends who drop by to chat and help with the boys. It’s Paul, Lucas and Leo who look after me so well and have never once moaned about how hard it is.

I’ve talked with Paul about the things I’d like the boys to carry on with when I’m gone, like the importance of working hard and my love of exercise, and presents I’d like them to be given on milestones in their lives.

In the meantime, the money we’ve raised will help provide grants to MND families to make special memories. Whatever happens, if I can leave a positive legacy, it’s all I can hope to do.” 

•  The Watsons were finalists in this year’s GoCardless JustGiving Awards – go to Justgiving.com/page/corinnewatsonmnd.