{"id":377,"date":"2025-03-09T13:00:00","date_gmt":"2025-03-09T14:00:00","guid":{"rendered":"http:\/\/curiousdrive.com\/?p=377"},"modified":"2025-03-19T21:33:42","modified_gmt":"2025-03-19T21:33:42","slug":"my-husbands-muscles-started-twitching-hes-been-given-3-years","status":"publish","type":"post","link":"http:\/\/curiousdrive.com\/index.php\/2025\/03\/09\/my-husbands-muscles-started-twitching-hes-been-given-3-years\/","title":{"rendered":"My husband\u2019s muscles started twitching \u2013 he\u2019s been given 3 years"},"content":{"rendered":"
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\n\t\t\"Milica\t<\/div>
Andrew (right) was fit and healthy, so I was sure he could survive (Picture: Milica Davies)<\/figcaption><\/figure>\n

\u2018I am really sorry because you are a young man and this is a life limiting condition.\u2019 <\/p>\n

After months of waiting for answers, the neurologist delivered them with crushing clarity. <\/p>\n

It was October 2024, and my husband Andrew had just been diagnosed with motor neurone disease<\/a> (MND) aged 51 \u2013 which affects your brain and spinal cord. The condition causes muscle weakness and gradual paralysis, making walking, talking, swallowing and eventually breathing impossible. <\/p>\n

The doctor\u2019s words didn\u2019t feel real. I thought he\u2019d got it wrong. We\u2019d been reassured in a previous appointment that it was unlikely to be MND. Andrew was fit and healthy<\/a>, so I was sure he could survive. <\/p>\n

\u2018Don\u2019t look up the life expectancy\u2019 was the doctor\u2019s first advice \u2013 so, of course, we immediately did. <\/p>\n

We read that the average MND patient <\/a>lives for about two to three years, and that there is no cure. <\/p>\n

I\u2019ve faced adversity in my life \u2013 I fled the Bosnian war growing up \u2013 but nothing prepares you for a diagnosis like this. Our family bubble had been burst. <\/p>\n

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\n\t\t\"Milica\t<\/div>
There was an immediate connection between us from our first date in London\u2019s Hyde Park (Picture: Milica Davies)<\/figcaption><\/figure>\n

I met Andrew online in 2006. There was an immediate connection between us from our first date in London\u2019s Hyde Park, despite my exam-like questions about shared interests and whether he wanted marriage and kids. <\/p>\n

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. <\/p>\n

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. <\/p>\n

At first, we were worried but didn\u2019t 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<\/a> getting worse he decided to book a private appointment. <\/p>\n

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\n\t\t\"Milica\t<\/div>
We tried to stay upbeat, but started hitting barriers straight away (Picture: Milica Davies)<\/figcaption><\/figure>\n

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 \u2013 his ankle was very weak, making it difficult to walk long distances.\u00a0\u00a0<\/p>\n

But Andrew\u2019s NHS appointment in October made it clear this wasn\u2019t the case. He had MND and he was going to die<\/a>. <\/p>\n

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. <\/p>\n

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. <\/p>\n

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\n\t\t\"Milica\t<\/div>
It was the hardest thing we\u2019ve ever had to do (Picture: Milica Davies)<\/figcaption><\/figure>\n

He now has to wait until May to find out if there\u2019s any hope, leaving us no choice but to tell the children, aged 12 and 14. <\/p>\n

We\u2019d put off telling them for as long as possible, but we reached a point where Andrew couldn\u2019t 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\u2019t keep making excuses.\u00a0<\/p>\n

It was the hardest thing we\u2019ve ever had to do. <\/p>\n

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. <\/p>\n

Our daughter said, \u2018But what would be the point of life without you?\u2019\u00a0<\/p>\n

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\n\t\t\t\tWhat is Motor neurone disease?\t\t\t<\/h2>\n
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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.<\/p>\n

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.<\/p>\n

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\u00a0and a medicine called riluzole that can slightly slow down the progression of the condition.<\/p>\n

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.<\/p>\n

The NHS lists the early symptoms as:<\/p>\n