Dad shares devastating subtle symptoms he 'dismissed' before being given two years to live

A dad has revealed the subtle symptoms he overlooked before being told he has just two years to live.

Barry Jones, a 45-year-old pipe fitter from Milford Haven, Pembrokeshire, Wales, was told he had motor neurone disease (MND) just months after marrying his wife Holly.

MND is a rare, progressive neurological disease that damages the motor neurons in the brain and spinal cord. Motor neurons control muscle activity, including walking, speaking, swallowing and breathing. When these nerve cells no longer work properly, muscles weaken and waste away.

Barry Jones is raising awareness about motor neuron disease (Holly Jones)

The disease ultimately leads to death, however the time in which this happens varies. Professor Stephen Hawking lived with MND for 55 years after he was diagnosed at age 21.

Jones did not initially think the early symptoms he experienced were signs of MND. “It was over our heads for ages. It started way back maybe a year or so ago,” he told Wales Online.

“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.”

He added: "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.

Jones did not think he was ill (Holly Jones)

"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."

Jones and his wife have launched a fundraising campaign for experimental treatments which has raised over £12,600 so far. He has also received an outpouring of support from friends, family and his local community.

"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."

Common symptoms of MND:

• Weakness in your ankle or leg - you may trip or find it harder to climb stairs
• Slurred speech
• Difficulty swallowing some foods
• Weaker grip - you may drop things or find it hard to do up buttons or open jars
• Muscle cramps and twitches
• Weight loss
• Difficulty from stopping yourself from crying or laughing in inappropriate situations

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