A hardworking father of four has shared the subtle symptoms he overlooked before being hit with a life-changing diagnosis. Barry Jones, a pipe fitter from Milford Haven, Pembrokeshire, was rocked by the news earlier this month that he is battling motor neurone disease (MND), with an estimated two years left to live.
Barry, who tied the knot with his wife Holly in May, had been anticipating a bright future. Now, they’re grappling with his condition and exploring options to extend his life. The couple’s fundraising efforts for experimental treatments have already gathered over £11,000 in mere days.
The 45-year-old initially felt “crushed” upon learning of his illness, expressing: “In my mind, I can’t be ill, I’m strong, I work out, I do martial arts, I work hard.”
He’s now determined to focus his strength on fighting the progression of MND, reports Wales Online.
Motor neurone disease is a rare disorder that targets the brain and nerves, leading to progressive muscle weakness. Everyday tasks such as moving, swallowing, and breathing become increasingly challenging for those affected.
The timeline varies significantly; while some live only a few years, others, like renowned figures Stephen Hawking and Rob Burrow, have documented their extended battles with MND.
Barry shared his harrowing journey, saying: “It was over our heads for ages. It started way back, maybe a year or so ago. I practice martial arts, I was noticing my grip, I wasn’t able to hold as much, or get up off the floor as fast. I thought it was just my age. And obviously as time went on, my legs were really stiff in work, I was having to sit down a lot, then I was going off balance. This was all going on over a number of months. In the end I couldn’t even climb ladders and what I have to do to do the job.
“Then I fell over outside my house and cut all my face because my balance is gone and strength was gone. I fell over. But in my mind, I can’t be ill, I’m strong, I work out, I do martial arts, I work hard.”
“I went to work the next day, when they saw me walk in they were like ‘Listen you are not fit to be on here, you have to go off site’. Then I had my appointment with a neurologist, and me and Holly were given the bad news that I have all the signs of motor neurone disease, and it was two years to go.”
Hearing the diagnosis was incredibly tough for Barry, who admitted: “We have had our moments crying, it crushed me.”
In those initial days, while grappling with the reality, he even contemplated “going to Switzerland.” He took some practical steps too, like checking his life insurance cover. Reflecting on seeing public figures like Rob Burrows battling MND, he resolved: “In my mind, I can’t let myself get to that stage.”
The outpouring of support and love from loved ones and the local community for a man diagnosed with Motor Neurone Disease has been described as “amazing”.
United in their effort, Barry’s circle is dedicating their energy to make his life as fulfilling as possible within the time he has left. They are also exploring alternative therapies to slow down the progression of his condition.
Barry shared: “I obviously know what is going to happen, but all I can do is take each day as it comes and stay strong. There is no cure, but what we are trying to do is longevity.
“It is such an unresearched disease, the NHS hasn’t got a clue about it. Since then, Holly and her mother have been looking at alternative medicines and treatments, what causes it or what might help prevent or longevity, what not.”
Barry added: “Holly has got me on a gluten free diet now, which they say can help with the inflammation. It has made me feel a bit better, I’m never going to get the strength in my hand and my leg back, at the minute it is affecting my whole left side.”
Barry experiences twitching in his muscles but persists with stretching and exercising where possible, intending to maintain muscle function. With a background as a martial artist and instructor, staying active has always been a significant part of Barry’s life.
Holly, 38, noted that their children are “still expecting him to make their tea”. Holly and Barry are parents to four children, with their youngest being only nine-years-old.
“I don’t know if they know, because they have always seen Barry as a strong person. I don’t think they’ve taken it in or like us, in denial and things,” Holly added.
Barry wanted to express his gratitude to everyone who has supported his family and the fundraiser so far. You can contribute to the fundraiser here.