A devoted father-of-four, Barry Jones, has opened up about the seemingly minor symptoms he ignored before being hit with a life-changing diagnosis of motor neurone disease (MND). The pipe fitter from Milford Haven, Pembrokeshire, who tied the knot with his wife Holly in May, was looking forward to their future together.
Now, they face the reality of his condition and are seeking treatments to prolong his life. They’ve started a fundraising campaign for experimental therapies, which has impressively amassed over £11,000 in mere days.
Despite being initially “crushed” by the news, 45-year-old Barry is now focusing on fighting the disease. He expressed his disbelief, saying: “In my mind, I can’t be ill, I’m strong, I work out, I do martial arts, I work hard.”
His story highlights the determination to live in the face of MND, a degenerative condition that affects the brain and nerves, leading to increasing physical disability and eventually death. While some patients may survive years or even decades, others like Stephen Hawking and Rob Burrow have become well-known for their public battle with the illness, reports Wales Online.
Barry recounted the unnerving symptoms leading to his shocking diagnosis, sharing: “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.”
Barry also opened up about how crushing the diagnosis was, admitting: “We have had our moments crying, it crushed me.”
In the harrowing early days after receiving his Motor Neurone Disease diagnosis, Barry seriously considered “going to Switzerland”. He conscientiously checked on things like his life insurance coverage but resolved not to deteriorate like other well-known MND sufferers have: “In my mind, I can’t let myself get to that stage.”
The wave of support from loved ones and the wider community has been nothing short of “amazing”, with everyone rallying around to improve Barry’s life for as long as possible. They are investigating every possible treatment that might slow down this relentless disease.
Fully aware of his prognosis, Barry remains determined to live each day fully, focusing on maintaining his strength: “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,” he states.
Barry is vocal about the lack of research on MND, commenting that even the NHS is largely in the dark about the condition. He and his family have since been looking into alternative medicines and therapies, seeking out potential causes and measures that might afford longer life.
On top of these intricate medical strategies, dietary changes are also on the table: “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.”
Even with muscle twitches and weakening strength, Barry continues to exercise and stretch, using skills from his martial arts teaching experience to stay as active as possible. Holly, 38, revealed that their children are “still expecting him to make their tea”. Holly and Barry share four children, the youngest of whom is just nine.
“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,” Holly added. Barry expressed his heartfelt thanks to everyone who has supported his family and the fundraiser so far. You can contribute to the fundraiser here.
