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‘I miss walking for miles and miles’: Brave Dundee woman, diagnosed with motor neurone disease aged 29, shares ‘devastating’ battle

Jo and her dog Chino.
Jo and her dog Chino.

Tayside’s youngest motor neurone disease sufferer has opened up on her journey to raise awareness of the condition.

Jo Knowlton, 30 was “devastated” to be diagnosed last year at just 29-years-old.

She is sharing her story for this week’s MND Action Week, to help others spot the signs of the rapidly progressing terminal illness, which stops signals from the brain reaching the muscles.

Jo, who works in forensic services for the Scottish Police Authority, first spotted warning signs when she was test-driving a car in February 2019.

She had struggled to turn the key to start the car but put her concerns down to having not driven for years.

Jo Knowlton.

She visited her GP in March after struggling with buttons and zips and was admitted for tests in August.

A neurologist broke the news that she has MND. There is no cure.

Jo said: “I felt fine and I didn’t understand how this could be the conclusion. I thought I had my whole life ahead of me but now I was faced with being told I had a terminal illness, aged 29.

“My family have been devastated by my diagnosis, my mum especially. I’m an only child from a single parent family and mum and I are very close.”

Jo, originally from Peebles, was due to start MND-SMART drug trials in April in an effort to slow down the disease but treatment has been paused due to coronavirus.

“Progression has been quick and life has changed dramatically. I’ve always been a keen gym-goer and walker,” she said.

“I really miss just walking for miles and miles with my dog Chino. Some weeks I would have done 100,000 steps, now I struggle to walk to my car.

“I’ve always been fiercely independent so it’s difficult having to rely on other people and ask for help with everyday tasks.

“I’ve tried to stay positive and take opportunities to make memories with my family and friends but that’s all had to stop since Covid-19.

“I’m stuck indoors and I can’t get this time back. My mobility has deteriorated since lockdown and due to the nature of my job I’m not able to work from home.

“This leave me too much time with my own thoughts on MND and my future.”

MND Scotland has helped Jo tick off some of her bucket list as she went on her first trip to Iceland in December.

You can follow Jo’s journey through her blog at josjourneywithmnd.home.blog/.