"I've been given two years to live but I've not accepted that and will never stop hoping"
A Rotherham teacher and father-of-one diagnosed with MND says the two-year life expectancy he was given is “not a foregone conclusion”.
Joe Wilson, just 37, was diagnosed motor neurone disease in October last year after noticing less stamina while playing football and feeling tired afterwards.
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The dad-of-one, from Wickersley, at first put this down to his age, thinking it may be time to “hang the boots up”.
However by April he was feeling cramp in his left hand, which worsened to the point where his thumb muscle had “disappeared” and his lifting power in the gym had decreased by 50 per cent.
An electromyography test in hospital later confirmed what Joe already feared and he was told he had two years to live.
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He said: “It was devastating - my whole life I’ve been into sport and I lived the healthiest life I could possibly live. I didn’t smoke, I didn’t drink. I never ate processed foods and I ate lots of supplements.
“I did 20,000 steps every day so it was a massive shock. It took me a few weeks to process it but my initial thoughts were that this has got to be wrong.
“How can somebody put so much time into living heathy get a diagnosis like this?”
He says giving the bad news to his dad and brother was “really difficult” but his daughter Marnie, 8, has been a different prospect.
He said: “She still sees me fit and well. We still ride our bikes, we still go for walks. She asked me if you get MND from eating pickled onions. She’s sees me doing all the normal jobs I’ve always done.
“I’ve showed her the hand muscle and explained that’s the start of it but she knows the doctors really don’t know much about the disease so we just take it each day as it comes.”
Tests show Joe’s MND is not hereditary but sporadic - which is much harder to treat - but a timeline of his life shows potential triggers, such as inhaling pesticides, do not apply in his case.
He said: “It’s very frustrating because I’m asking so many questions but the replies (from doctors) are ‘we don’t know’.”
Medics are unable to give Joe any indication of how his symptoms will worsen and over what period of time. However he has been stable since April.
Joe, who was a primary school teacher for 13 years, stopped working in November while struggling to manage his symptoms at work - in order to focus on slowing the symptoms down.
Day-to-day, Joe has been advised by doctors not to exercise but, having a degree in sport science, he says this goes against “everything” he learned.
The former teacher takes daily pilates and yoga classes, swims, and observes a ketogenic diet.
He said: “Although my first appointment with a neurologist made me feel like I was going to die next week, there are things in terms of exercise and diet you can do to slow it down.
“They’ve said I’ve got two years to live. I’ve accepted that I’ve got Motor Neurone Disease but I don’t think I’ve got two years to live. I feel really good in myself.
“I was really young when I was diagnosed so my starting point is different. I’m positive and have accepted what I’ve got but I’ve not accepted that I’ve only got two years to live.”
Studies have shown some MND patients have lived for 20 years or longer with the condition and there are 47 confirmed MND reversals worldwide - where patients have experienced a significant or complete recovery of lost motor function.
“I’ll never stop hoping really,” said Joe.
“The way I’ve treated my body my whole life, I feel it’s not a foregone conclusion as the neurologists make out.”
At the time of writing a fundraising page set up to support Joe’s treatment had raised over £22,000.
Speaking about that, he said: “What’s been really significant for me has been all the messages of support.
“When I sat down and went through them, the words meant so much more than the donations. The support has been incredible.”
Anyone wishing to make a donation to support Joe can do so HERE.