MND hits you like a ton of bricks – it’s the loss of the future you thought you had
CORINNE Watson was 42 when she was diagnosed with ALS.
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.
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Paul says: “I will never forget the day Corinne and I went to hospital for her test results.
She was terrified, but I assured her that she was only 42 and fit enough. When we sat down in the specialist’s office, he gave chase: “I’m sorry you did that motor neuron disease [MND].’
I fell apart, but Corinne sat there in silence.
She had suspected that her slurred speech was due to the same incurable neurological disease that rugby star Rob Burrow had, while I refused to consider losing the most intelligent, caring, adventurous and full of life person I knew.
Corinne and I met in high school in 1997 and immediately became an item.
We both went to Salford University and then 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 local government, and we had a great future ahead of us as a family.
We first noticed Corinne was slurping in the spring of 2021, but didn’t think much of it.
She was super fit and healthy, ran half marathons and had a razor-sharp mind. But as the months passed, the nagging got worse.
Finally, on that cold morning in November 2022, tests confirmed our worst fears.
It hits you like a ton of bricks – the loss of all those years you thought you had together.
Seeing our boys grow up and the adventures we would have. After brief conversations with the consultant and nurses, we walked out of the hospital in silence, after which Corinne collapsed.
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Although we didn’t know how fast the MND progress, there was only one possible outcome. Leo was eight at the time and Lucas twelve.
They knew Mom wasn’t well, and when we told them, Lucas said, “You’re not going to die, are you, Mom?” She replied, “Yes, I’m sorry.”
It was disturbing, but he had to know the truth. Leo just kept playing with his Lego – even now he doesn’t like to talk about it, but they both had great support from their school.
The doctor recommended packing as much as possible for the next twelve months. So that Christmas we took the boys to New York, then to Rhodes the following summer, to Sorrento in the autumn, and to many British holidays too.
But going abroad became increasingly difficult as Corinne’s condition worsened, and we realized we didn’t have to fly halfway around the world to spend time together.
Meanwhile, our family, friends and community gathered. In early 2023, my sister-in-law Liz set up a JustGiving page, hoping to raise £5,000 for ALS research.
After smiling all the way to the top, she burst into tears at the feeling of achievement combined with the harsh reality
Paul Watson
This kicked off our fundraising efforts, which included marathons, sponsored walks and climbing England’s sixth highest mountain last June.
The weather that day was far from ideal, with wind, rain and fog, but Corinne insisted on coming with us. By then, her ALS was affecting her walking and she was losing weight, but she was determined.
I don’t know how she did it, and I took a picture of her at the top, which says it all. After smiling all the way to the top, she burst into tears at the feeling of achievement combined with the harsh reality: just a year earlier, she would have walked up that mountain.
Then she posted on Facebook, “When life gives you lemons, if you’re lucky, your wonderful family and friends get together to make lemonade,” and that’s true.
So far we have raised almost £40,000, and Corinne says every pound is a symbol of love for us all.
She now relies on a wheelchair to get around, but she is determined to be there for the boys’ sports days, for example.
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She also has difficulty swallowing and it is difficult to understand her, which is terrible for her.
She is almost entirely dependent on a text-to-speech app and suffers from esophageal spasms several times a week, which can be disturbing as she appears to be choking.
I have dark moments but I have to get through them because we can’t not go on. As hard as 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 feels my fear and anger.
It may sound boring, but there’s a great quote from Rocky Balboa where Sylvester Stallone says, “It’s not how hard you hit, it’s how hard you can get hit and keep moving forward.” This sums us up perfectly: our ability to keep going.”
Corine says: “When I got my diagnosis, all I could think about was the boys: how would we tell them? And how would they cope with the loss of their mother?
That never gets easier. MND is terrifying. You are completely helpless to stop the total breakdown of your body. There is no medicine, no treatment, no tool to help you fight it.
In the twenty months since my diagnosis, I have gone from being a very active mother to using a wheelchair. I cannot cook or drive and need help with basic tasks.
Paul is actually my full-time caregiver, along with his mother Anne. I can choke on food and have had some pretty epic falls. But the most devastating thing is that I am no longer the mother I used to be.
We can’t talk about Lego, friends or school, and it’s hard to help with homework. I can’t tell the boys – what they secretly love! But despite all this, life goes on.
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Paul works, the kids go to school and their clubs, and there are chores to be done. We still manage to have movie nights together, picnics and short walks with our dog Marley.
In May this year we found out we had been nominated for a JustGiving award and we were over the moon. It was great to see our amazing group being celebrated – but Team Corinne is more than that.
It is the family members who do the housework and deliver the meals. It’s also my colleagues who made so many adjustments that allowed me to continue working for so long – I only quit earlier this year, which was annoying because I loved my job.
And it’s the friends who come over to chat and help with the boys. It is Paul, Lucas and Leo who take such good care of me and have never complained about how difficult it is.
I talked to Paul about the things I want the boys to continue with when I’m gone, like the importance of hard work and my love of exercise, and gifts I’d like to give them at life milestones. their lives.
In the meantime, the money we raised will help provide grants to MND families to make special memories. No matter what happens, if I can leave a positive legacy, that’s all I can hope to do.”
