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Diagnosed with MND at 29: Dundee woman Jo on her mission with Doddie Weir to help others

Jo Knowlton.
Jo Knowlton.

Dundee woman Jo Knowlton was just 29 – in a great job, with her own home, busy and excited for the future – when life changed forever.

But soon after her devastating diagnosis of motor neurone disease (MND) Jo began writing, campaigning to raise awareness and fighting for more research to help others.

Here, she shares her inspiring story with us:

Jo with her mum and dog Chino at their specially-adapted bungalow in Broughty Ferry.

‘Strength comes from my fight to live’

Jo, now 31, is passionate about being a voice for others.

“I don’t want people to be doing sky dives or marathons “in Jo’s memory”. We need funds for research now. I want to be here to see the breakthrough, not just for myself but everyone I’ve met living with MND through an online support group.”

She says she finds strength from the fight in her to live.

“Look at the progress made with Covid,” she says. “It was new and unknown. We now have a vaccine. MND has been around for years and there hasn’t been much progress. We still don’t even know what causes it.

“There are so many people affected by MND. People with young children, people like me who would have loved to have had a family.

“Because life expectancy is so short, it appears like there aren’t very many people who have MND. But it can affect 1 in 300 people.

“MND is so behind in terms of treatment and options available. I’d love for us to get to a stage where MND is no longer a death sentence.”

‘How could this happen…I’d led such a healthy life’

Before diagnosis, as well as being fit – walking, cycling or going to the gym daily – Jo cooked all her own food from scratch, didn’t smoke and wasn’t a big drinker.

She worked in forensics for the Scottish Police Authority.

Jo working as a post grad in Turkey.

The first signs something was wrong came when Jo was about to test drive a new car and found she couldn’t turn the key. Her GP sent her for tests.

“I’d led such a quiet life. I wasn’t a risk taker,” Jo explains. “I felt I’d done everything recommended to be ‘healthy’.

‘I cried and cried’

“When I was in hospital for my diagnosis I still wasn’t overly concerned because my tests were coming back healthy.

“But I didn’t realise that when I got the all clear from the tests, that wasn’t a good thing. They were ruling everything else out and MND was all that was left.

“When I got my diagnosis my world fell apart. I was 29 and told I’m terminal. It was just such a shock. I cried and cried. I couldn’t understand how I could be so unwell.”

Jo’s life is different now. She spends days quietly at home watching TV, sitting in the garden or going to the park with her dogs. She’d like to go back to the cinema when the Covid risk is lower.

She needs help with daily living – provided by her mum and carers. But Jo’s spirit is remarkable.

“I have learned to adapt to each change as it’s happening,” she says. “I try to stay positive and have a good sense of humour, that’s what gets me through each day.

‘I have to live in hope’

“My biggest wish for people with MND would be for us all to recover and live a full life. I often fantasise about learning to walk again, and the journey to recovery.

“Any doctor today will tell you that is not possible. I choose not to live in that negative headspace. I’m not in denial, but I have to live in hope in order to get through each day. Otherwise I would feel like I was waiting to die.

“If we can get more funds into research, why couldn’t it be possible?

“At the very least we want to start with something that can slow down the progression of the disease. Research is now at a point where they are so close to a breakthrough.”

Doddie’s way

It’s a view Jo shares with Doddie Weir, who she has met. She’s proud to be part of the #United2EndMND campaign alongside him.

Joining forces with MND patients across the UK, Doddie and rugby league great Rob Burrow, Jo last weekend sent a personal letter to Prime Minister Boris Johnson.

Doddie and Rob delivered the letter to Downing Street. It calls for a £50million investment for research. The campaign is led by MND Scotland, with the My Name’5 Doddie Foundation.

“Doddie’s positivity and sense of humour is infectious. He inspired me to be positive and take each day as it comes.

Doddie Weir.

“Both Doddie and Rob have been great at raising awareness and getting their stories out there.

Rob’s documentary was difficult to watch but it’s so important that people see how devastating MND really is.

“People can help by sharing the campaign articles online to raise awareness. You can also help by making a donation to MND Scotland. Or, if you do any charity events, choose them as the charity.”