‘I am really sorry because you are a young man and this is a life limiting condition.’
After months of waiting for answers, the neurologist delivered them with crushing clarity.
It was October 2024, and my husband Andrew had just been diagnosed with motor neurone disease (MND) aged 51 – which affects your brain and spinal cord. The condition causes muscle weakness and gradual paralysis, making walking, talking, swallowing and eventually breathing impossible.
The doctor’s words didn’t feel real. I thought he’d got it wrong. We’d been reassured in a previous appointment that it was unlikely to be MND. Andrew was fit and healthy, so I was sure he could survive.
‘Don’t look up the life expectancy’ was the doctor’s first advice – so, of course, we immediately did.
We read that the average MND patient lives for about two to three years, and that there is no cure.
I’ve faced adversity in my life – I fled the Bosnian war growing up – but nothing prepares you for a diagnosis like this. Our family bubble had been burst.
I met Andrew online in 2006. There was an immediate connection between us from our first date in London’s Hyde Park, despite my exam-like questions about shared interests and whether he wanted marriage and kids.
Fortunately, he did. We were married within 18 months, and renovated a fairytale Georgian house in Hampshire, where we raised our two children in a joyous world of long walks, music and art.
Things changed in July last year, when Andrew noticed muscles twitching in his limbs; the spasms spread to his whole body within a few weeks.
At first, we were worried but didn’t catastrophise. We knew MND was a possibility, but it was the worst of many. Andrew joined the waiting list to see an NHS neurologist, but with a waiting list of months and his spasms getting worse he decided to book a private appointment.
Here, he was told it was unlikely he had MND, as he was showing no signs of Bulbar Palsy, a type of MND that primarily affects the tongue and can be spotted easily as it causes tongue weakness. Although Andrew did suffer from tiredness and mobility problems – his ankle was very weak, making it difficult to walk long distances.
But Andrew’s NHS appointment in October made it clear this wasn’t the case. He had MND and he was going to die.
We tried to stay upbeat, but started hitting barriers straight away. The biggest source of hope for MND patients is that cases caused by a faulty SOD1 gene could be treated. However, this is very rare; just 2% of people have this type of MND.
On the day Andrew was diagnosed, he had a blood test to check whether he was a member of the 2% club, but in January we were told his blood sample had been lost.
He now has to wait until May to find out if there’s any hope, leaving us no choice but to tell the children, aged 12 and 14.
We’d put off telling them for as long as possible, but we reached a point where Andrew couldn’t even go for a walk. We made up reasons for why, like saying ‘Daddy has a lot of work’, but there is a point at which you can’t keep making excuses.
It was the hardest thing we’ve ever had to do.
The kids sat on the sofa and Andrew talked them through how his ankle was getting weak, and this was part of a bigger problem. We all cried.
Our daughter said, ‘But what would be the point of life without you?’
What is Motor neurone disease?
Motor neurone disease (MND) is an uncommon condition that affects the brain and nerves. It mainly impacts people in their 60s and 70s, but it can affect adults of all ages.
MND is caused by a problem with cells in the brain and nerves called motor neurones. Over time, these cells stop working, and the disease gets gradually worse – moving, swallowing and breathing get increasingly difficult.
Currently there is no cure for the disease, which shortens life expectancy and eventually, leads to death. Treatments do exist that mean some people can live with the condition for many years, including physiotherapy and a medicine called riluzole that can slightly slow down the progression of the condition.
In most cases, it is not hereditary, but having a close relative with motor neurone disease can sometimes mean you’re more likely to get it.
The NHS lists the early symptoms as:
- weakness in your ankle or leg – you might trip, or find it harder to climb stairs
- slurred speech, which may develop into difficulty swallowing some foods
- a weak grip – you might drop things, or find it hard to open jars or do up buttons
- muscle cramps and twitches
- weight loss – your arms or leg muscles may have become thinner over time
- difficulty stopping yourself from crying or laughing in inappropriate situations
The NHS advises you to speak to your GP if you experience the symptoms. ‘It’s unlikely you have motor neurone disease, but getting a correct diagnosis as early as possible can help you get the care and support you need,’ they state.
For more information and support you can contact the MND Association.
Our son was also upset but wanted to know how this would affect Daddy’s salary, which was met with both laughter and explanations.
His question was a good one. My husband’s disease is a health problem, but it’s also a life problem. Every aspect of our lives has been upended, including our finances.
I’m a guitar teacher but also spend a lot of time looking after the children, so Andrew has always been the breadwinner. As an NHS consultant psychiatrist, he’s always been well paid and we rely on his income.
But when he was diagnosed, Andrew was advised to retire immediately instead of taking sick leave. He refused to. His life insurance is also refusing to pay out, claiming he could still recover from this incurable disease.
It’s a baffling decision – we’re all hopeful a cure can be found, but it’s not here yet so there’s no excuse for them to be so optimistic.
With Andrew unable to work and me too busy to work properly alongside looking after him and the kids, we’re struggling to pay our mortgage and will probably have to downsize.
I’ve reached out to charities for help to mixed effect. Our local hospice has been brilliant and will provide palliative care when needed, and an MND charity gave us a grant to pay for a family holiday.
But there’s not enough being done to find a treatment or cure.
This wouldn’t be acceptable with any other disease, so why should it be tolerated by families like mine whose lives are being destroyed?
5,000 people have MND in the UK at any one time. That’s 5,000 people who may be feeling invisible, vulnerable, and let down and essentially left for dead.
We need to break the taboo around MND and find a cure – now.
Do you have a story you’d like to share? Get in touch by emailing jess.austin@metro.co.uk.
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