I thought I had repetitive strain injury – then I was diagnosed with motor neurone disease at 35

Before my diagnosis, I was fit and healthy (Picture: Sam Hayden-Harler)

As I watched my husband James and our five-year-old son go off to dance together without me, I started welling up with tears.

‘Why me?’ I thought to myself, while we were on a cruise in March. ‘What did I do to deserve it?’

I’m talking about my motor neurone disease (MND) diagnosis in March last year, which is a condition that affects the brain and nerves. It will get worse over time and there is currently no cure.

In those moments, I try to remember what my neurologist told me, which is not to think it’s anything I’ve done or not done – they don’t know why it happens.

That’s why it’s so important that Coronation Street is shining a light on the condition with Paul Foreman’s (Peter Ash) recent storyline. So far, he’s grappling with his diagnosis, including hiding it from his loved ones. It will be invaluable for educating people on the reality of my life – and many others with MND too.

Before my diagnosis, I was fit and healthy. In fact, I even ran the London Marathon twice.

Last March – just over a year after first noticing symptoms – I was finally diagnosed with motor neurone disease (Picture: Sam Hayden-Harler)

But I began to notice a problem at the age of 34 in February 2021, when I couldn’t open bottle tops without effort. Then I started getting pain in my wrist and hand, which I put down to carpal tunnel syndrome or repetitive strain injury.

When it didn’t improve, I went to my GP a couple of months later, who wasn’t sure what it was.

The GP sent me to a physiotherapist, who alerted me to the fact that they didn’t consider it muscle-related, but likely to be neurological. So I went to a neurologist for nerve conduction tests, blood tests and an MRI scan. I was apprehensive and my mind was racing as to what the results would show.

My symptoms were not very noticeable at this stage. It was only towards the end of 2021 and early 2022 that I started to notice more weakness in my right hand and arm and in my leg. It didn’t affect my job as a loss adjuster too much – I’d just use different fingers to type or rest my arms after a while.

Last March – just over a year after first noticing symptoms – I was finally diagnosed with motor neurone disease. I remember the neurologist welcoming me to the appointment and she asked why I had come alone – that was my first warning sign that something not so great was yet to come.

The conversation is a blur in parts. She spent time going through each of the tests, although she didn’t go into much detail because she could see I was overcome with emotion. At several points, she looked at me and tried to establish if I had taken in what she had just said as I was staring out of the window.

When I got home, I told James. He tried to keep strong for me, but I went to bed early that night and I heard him sobbing downstairs. I knew his heart was breaking and there was nothing I could do about it.

Initially it didn’t affect my relationship with my son. It’s only since the middle of last year that I’ve not been able to run around and be energetic with him, but we still haven’t told him.

He’s seen me drop things and fall and he helps me put my jacket on. He knows that Daddy’s not well, but other than that, he doesn’t know too much – we kind of want to drip feed him.

But over the past year, my symptoms have worsened; I can’t tie my shoelaces or write because I can’t hold a pen and I have to walk with a stick due to weakness in my legs.

My condition now also affects my breathing, so doctors possibly want to ventilate me at night, as that’s the most vulnerable time for your breathing system. Every time I get tested, I see the progression and that’s just going to continue to happen unfortunately.

I take a drug called Riluzole, which can slow the progression of the disease, as well as an antidepressant to help with anxiety. I try to live life as normally as I can.

I’ve ticked so much off my bucket list in the last year and I’m weirdly positive about life (Picture: Sam Hayden-Harler)

I still work for a loss adjusters’, who recently invested in dictation software because I now find it difficult to use a keyboard and mouse. 

The diagnosis has given me the rocket under my bottom to go and live and I’m proud of everything I’ve done since then.

In fact, I’ve set up a fund to raise £50,000 for the MND Association and created a bucket list of 100 moments, experiences and memories. 

I’ve just come back from a cruise, I walked over the O2 and I was an extra on Casualty. A friend even organised SamFest – my very own music festival, with live bands, bars, craft stalls and a barbecue. You name it, I’ve done it.

I’ve ticked so much off my bucket list in the last year and I’m weirdly positive about life.

I’ll appreciate a good cup of coffee, or how pretty the garden looks. Of course, I have moments where I’m sad, angry and bitter – like the time on the cruise with my husband and son dancing.

I want to know that before my time is up, I’ve done everything I wanted to have done (Picture: Sam Hayden-Harler)

This is the reality it sounds like Coronation Street will be tapping into with Paul’s storyline. It sounds weird, but I was happy when I heard they were doing it. 

When I was diagnosed, I found nobody like me or nobody my age. And when I spoke to anyone about it, the first person they thought of was Stephen Hawking. They think that’s what MND is – that you can live for decades, or that it only affects older people. Sure, that’s what it can be like but that’s not my story.

Paul’s story may be upsetting to watch because I don’t like to think about what’s to come. But to have a soap character with MND will show the realities of what it actually is – and this will help many people without the condition understand.

I know the stats, but I don’t think it’s helpful to dwell on them. Instead, I’ve decided that MND is a part of me, but it doesn’t form me.

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Yes, it will probably affect my body in certain ways, but I’ve still got my personality, job, family and friends. And yes, my life will be cut short, but I’m going to fill it with as much happiness as I possibly can so I know it was a life well lived.

All our days are numbered in some capacity. Why am I going to let myself get sad about it?

Instead, I want to know that before my time is up, I’ve done everything I wanted to have done.

As told to Sue Crawford

For more information on Motor Neurone Disease go to the MND Assosciation’s website here. To help Sam raise funds, visit his GoFundMe link here.

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My life will be cut short, but I’m going to fill it with as much happiness as I possibly can.