Motor neurone disease: Jason Bowen on his MND diagnosis
- Published
Heartbreak, tears and lots of talking - these were the reactions of Jason Bowen's family after he told them he had motor neurone disease (MND).
The former Wales footballer and father of three, 50, is determined not to look too far ahead and to enjoy the present.
A debilitating condition that affects the brain and nerves, there is currently no cure for MND, external.
It claimed the life of rugby player Doddie Weir, while rugby league star Rob Burrow is living with the disease.
"They were heartbroken," said Bowen, who played for Swansea City, Cardiff City and Birmingham City.
"[There were] a lot of tears, a lot of talking and just trying to stay positive."
His voice breaks as he reflects on telling his loved-ones he was living with a condition he knew was incurable and can significantly shorten life expectancy.
Bowen's first thoughts turned to his three sons - Jaye, 27, Theo, 14, and Sam, 22, a footballer himself and on the books of Newport County, one of his dad's former clubs.
"We still have a lot of banter and things, they treat me as normal which has been great," he said.
"They're very supportive and help out as much as they can as well."
Fit and healthy his whole life, Bowen hung up his boots in 2013, aged 40, after a spell with Llanelli Town.
The Merthyr Tydfil-born 50-year-old, who now lives in Langstone, Newport, then started a new career as a railway engineer.
It was about two years ago he first noticed something was potentially wrong.
"I was in the house with my wife and had a lot of twitching in my muscles going down my left side, and my hand was getting a little bit weaker," he said.
"So she said 'look, you're off work, go to the doctor's'.
"Within five weeks I was diagnosed with MND."
While the speed of the diagnosis may have shocked him and his family, he praised wife Hayley, 49, for her support and how she has helped him stay positive.
"My wife has been superb from the start, she's on the internet looking up things," he said.
"She's been amazing, she's pushing me all the way."
One of the first things he thought about before telling her was the fact Hayley's mother had died from MND about 18 years ago.
"It was a bit of a double whammy for my wife because obviously she cared for her mother," he added.
"I think Beryl only lasted two, two-and-a-half years with the disease and then she passed."
While it mainly affects people in their 60s and 70s, MND can be diagnosed in people of any age.
Former Scotland rugby union international Doddie Weir died last November, aged 52, after raising millions of pounds for research into the disease and being appointed OBE.
Rob Burrow, 40, a rugby league star for Leeds Rhinos, was diagnosed in 2019 and appointed MBE for raising awareness of the condition.
For Bowen, who won two caps for Wales, he is still learning to live with his new circumstances, and has recently started attending a rehabilitation centre for people with neurological conditions.
Jakko Brouwers, from the Morrello Clinic in Newport, has worked with him for a year, and said: "At first it was more finding out where is Jason in his diagnostic pathway, and how is he in himself.
"We set out to measure his fitness levels, and to map where he has weakness caused by the condition, but also weakness caused by non-use."
Mr Brouwers added Bowen was doing well, and that his footballing background meant he was in tune with his body and able to push harder when asked.
The different exercises have helped him keep on top of his symptoms.
Bowen added: "The saying they've got [at Morrello] is 'maintain until you lose it'.
"They've been really positive, mentally as well as physically."
For now, Bowen believes he is dealing with the illness and will keep that focus, saying he does not want to look "too far into the future" and instead enjoy living in the present with his family. "The last couple of years, it's just my hand gradually getting a little bit worse," he said.
"I struggle to do little things like buttons and belts and laces. But I can still do a lot of things."I know further down the line things might get a bit more difficult for me, but I'll meet them head-on and give them as best a go as I can."
He believes his professional sports background has also helped him.
"You've got to be a little bit tough because you get ups and downs with football," Bowen added.
"Apart from the two weeks at the start, I think mentally I've been OK, and just filling my mind with trying to keep as healthy as I can."
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