'Mum's illness was a living nightmare - her screams will haunt me forever'
New UK|June 27, 2022
To mark Global MND Awareness Day on 21 June, new's Kirsten Jones tells of her heartbreak when her mum was struck by the cruel disease
KIRSTEN JONES
'Mum's illness was a living nightmare - her screams will haunt me forever'

'Mum’s walker trundles slowly down the hospital corridor, the sound of her deep breaths echoing loudly as she drags her failing body into the consultant’s office. He leans forward into the thick silence and delivers the words we’ve been dreading: “I’m very sorry to tell you that you have motor neurone disease.” In five small seconds, our whole world falls apart.

When Mum was diagnosed with MND in January 2020, we thought we had time to accept and adapt, to make peace and move on. The truth is, Mum didn’t have that time on her side. Six months after the diagnosis, she slipped away.

I remember asking, on my birthday in July 2019, “Mum, why are you slapping your feet down when you walk?”

She shrugged happily and said, “I’m just tired – old age!”

She was only 58 and not an old woman by any stretch – she walked miles every day and had a social calendar to rival a Hollywood socialite.

Then, weeks later, she couldn’t pull on her shoes or unscrew a jar. “It’s alright, don’t worry about me,” she smiled.

But she knew what was wrong. A talented nurse, Mum saw the signs of motor neurone disease, but she didn’t want to believe it.

MND is a progressive and severely life-shortening disease which affects one in 300 people. It stops messages from the brain reaching muscles, causing them to weaken, stiffen and waste away. As the disease progresses, it can affect your ability to walk, talk, eat, drink and ultimately, breathe.

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