Motor neurone disease: Brave Jo on the cruel illness that robbed her independence

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Jo Knowlton

Funding plea: A Sunday Express crusade calls for £50million of Government funding for MND research (Image: nc)

Instead of spending her salary on luxury holidays she got a mortgage for a flat in Dundee, saved for a car and felt she had plenty of time to meet “Mr Right”, get married, have children, as well as travel.

So she was left “heartbroken” when she was diagnosed with motor neurone disease aged just 29, depriving her of the future she had planned.

Since her diagnosis on August 12, 2019, Jo has written a blog charting her journey with MND to raise awareness of how it affects people living with the rapidly progressing terminal illness.

Three weeks after receiving the crushing news she wrote: “I know I’d make a great wife, a great mother. I’m heartbroken that I don’t get to experience that. I’m heartbroken my friends will grow old without me.”

Jo, now 31, is backing a Sunday Express crusade calling for £50million of Government funding for an MND Research Institute to coordinate research for effective treatments and hopefully a cure.

After growing up in Peebles in the Scottish Borders she moved to Dundee aged 17 to study fine art and then forensic art, before working in a bank and completing an internship with Turkey’s national police in Ankara to land her dream job with Police Scotland.

Jo said: “I really enjoyed my job, I never dreaded going in and always looked forward to doing it.”

Jo Knowlton

Jo as a post-grad working with Turkish police (Image: nc)

However, after five years she noticed a weakness in her hands when she went to test drive a new car in February 2019.

Speaking from a specially-adapted bungalow in Dundee where she now lives with mother Anna, 70, and her pet dog Chino, she said: “It was the first time I had been able to afford a car of my own for a time, so I went to test drive it. The salesman was waiting for me to start the engine and I was trying to turn the key – but nothing was happening.

“Because I had not driven for a while I thought maybe it was just stiff, or there was another explanation for it, so I tried not to think too much of it.

“But then gradually as the months went on I noticed that my fingers weren’t closing together, they wanted to stay separate and I was struggling with buttons and zips, and coins in my purse.

“Eventually I went to the doctor. I felt like a bit of a hypochondriac saying ‘My fingers don’t close together’. I didn’t think she would be able to do or say much, but she referred me to a hand specialist at the hospital. She thought there might be a nerve trapped in my arm, so we did a nerve conduction study to find out where the nerve was trapped, and this found my nerves were abnormal at rest.

“They took me into hospital for an MRI scan and a lumbar puncture. Everything came back normal and healthy. When that happens all that is left is MND.”

Jo continued: “It was a massive shock because I thought MND was something that happened to older people.

“I have never been ill, I have always been a very active person and when I was getting these symptoms I thought there would be a simple explanation that could be easily rectified. I thought maybe worst case scenario multiple sclerosis, I did not think MND was a possibility. But when the neurologist said ‘I am afraid you have got MND’, because I did not know much about it I said, ‘Well, what do we do now?’

“He said, ‘I am afraid we don’t do anything, there is nothing we can do’.

“That was really hard to hear and it was tough for my family and friends to accept.”

Jo Knowlton with her dog

Jo with her pet dog Chino (Image: nc)

Jo continued doing the job she loved until March last year, when the Covid-19 pandemic forced her to shield.

The progression of the disease since then means she now struggles to use a computer unaided. Jo says she started her blog “because I think it is something people don’t know about or hear about”.

She explained: “It’s important people know what happens to the body when you have MND, and to try and raise a bit of awareness so that people will fund research and do fundraising events.”

She added: “In the two years I have had MND it’s stripped me of every part of my independence. I have gone from working full time and living alone with my dog to living with my mum, needing carers four times a day and not being able to work.

Jo Knowlton

The pandemic has aggravated Jo’s progression (Image: nc)

“I need help with absolutely everything, from washing and dressing to feeding. I wear a ventilator at night because my breathing isn’t strong enough when I’m flat on my back. It’s so devastating. There needs to be a breakthrough to find some form of treatment and hopefully one day a cure.”

This is why she is backing our crusade for Government funding for nationally coordinated targeted research into MND.

Jo said: “We have progressed so much with so many other illnesses, like cancer and HIV, you can now treat them, there are options. For MND there are not any options and I feel it has been left behind.

“It takes such a long time to find something and it has to go through so many stages if it is a new drug, for example. But MND does not wait. If I could send a message to the Government it would be that MND affects one in 300 people.

Jo Knowlton

In good company, before things got worse (Image: nc)

“We desperately need something, even just to slow it down, even if we don’t find a cure, to give people a better quality of life, so it’s not as devastating a terminal illness and something you can live with and have a certain quality of life.

“A properly targeted amount of funding could make a real difference in moving research forward more quickly.”

Comment by Rachel Maitland

When I joined MND Scotland last month I was shocked to find out how little investment is currently given to this debilitating and utterly devastating disease.

People like Jo show us this disease could happen to anyone, at any time in their life. MND does not discriminate and it has robbed Jo of the future she saw for herself.

This really brings home the cruel impact this illness has on the 5,000 families across the UK currently living with MND and the many more that will be affected in the years to come.

Since joining the MND community in my new role, I have been truly touched by the incredible support MND Scotland receives from communities across the country to further this cause.

But it shouldn’t just be down to people living with MND, and their friends and families, to raise the funds needed to find a cure.

Rachel Maitland

Little amount of funding for MND research is shocking… Rachel Maitland (Image: nc)

In 2018, MND Scotland funded the first MND clinical drug trial in Scotland in over 20 years.

In January 2020, thanks to a £1.5million investment from the charity, the biggest ever MND clinical trial in the UK was launched.

This shows the extraordinary progress that can be made within a few years if funds are invested.

Just think what £50million over five years could do to accelerate research into MND. That’s why we have joined forces with MND Association, My Name’5 Doddie Foundation, people with MND, clinicians, researchers and industry, to drive our United to End MND campaign forward.

Together, we have a real chance to make significant and meaningful progress in research, but we cannot do it alone.

It’s fantastic to have the backing of the Sunday Express to make sure we keep this important issue front of mind, and drive home the importance of continuing to invest in targeted MND research. Now we need the UK Government to join us too.

With Government support we could establish and support a virtual MND Research Institute to focus on creating a world-leading drug discovery and development programme, developing a sustainable MND trials platform and implementing a rigorous clinical research programme.

MND is not incurable, it’s just underfunded and people with MND do not have time to wait.

We need the UK Government to unite with us so we can see effective treatments being developed in the next five to 10 years.

Rachel Maitland is the Chief Executive of MND Scotland

Read Jo’s blog here



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