FOCUS: “You try your hardest to carry on” – What it’s like to live with MND

When Kevin Harding was diagnosed with motor neurone disease, he knew life would never be the same… Three years on, the 58-year-old is determined to keep living it on his own terms.

Ahead of MND Awareness Day and a special event at the Radisson on Saturday, he opened up to Express about his diagnosis, the challenges of living with the disease and the support that has helped him remain in his own home.

Spotting the signs

Kevin was formally diagnosed with MND in 2022, but the first signs that something was wrong appeared almost two decades earlier.

He recalls noticing problems with his arms and legs in 2003 or 2004, eventually forcing him to give up bike racing.

“About ten years later, I started feeling that my arms got tired. I didn’t think much of it. In 2015 or 2016, I noticed it more and more.”

Doctors thought it might be fibromyalgia or MS, he said, and it took several years before a diagnosis was confirmed.

In 2018, he left his job as a fishmonger because it was becoming too physically demanding. He later worked at the hospital for “as long as I could”, but his symptoms continued to worsen.

“That’s when they diagnosed me, in 2022…. It quite rapidly went downhill.”

For a time, he said, “I kept falling over” and his legs would give in if something hit them from behind.

Kevin is now fully paralysed and only move one finger.

His mother, Sue, who helps care for him, said the condition had a devastating impact.

“He’s had everything taken away,” she said.

Determination and support

But, despite that, Kevin remains determined to focus on what he can still do.

“It’s been a slow process, but you just try your hardest to carry on.”

Shortly after his diagnosis, he was introduced to Margaret McGovern, a visitor with MND Association Jersey.

At first, he said, “I didn’t ask for too much, there wasn’t much that I really needed.”

As his condition progressed, the charity became increasingly involved.

“Gradually, it was getting worse, Margaret was helping out with hydrotherapy and stuff like that,” he said.

Over the years, the charity has helped provide hydrotherapy sessions at Jersey Cheshire Home, specialist equipment including a hoist and slings, home visits, prescriptions, an alarm button, M&S vouchers for Christmas, and other practical support designed to help him continue living independently.

“I don’t really feel on my own”

While some going through the condition might feel alone, Kevin explained that he had a good support network around him.

Kevin, his mother, his former wife and a team of carers work together to ensure he always has someone with him.

There have also been battles along the way.

Ms McGovern, Sue and Kevin have spent years advocating on his behalf, including when a social worker proposed moving him into a care home.

Instead, he continues to live in his St Helier flat.

Ramps installed with the charity’s support allow him to access his garden, where he grows berries, lettuce and beans with help from family members.

He is also supported by a close-knit network that includes a neighbour who regularly brings him fresh fish and his cat, Oscar.

“I don’t really feel on my own,” he said.

SUPPORT…

MND Association Jersey currently supports 12 Islanders living with the condition.

To mark MND Awareness Day, the charity is hosting a public drop-in session at the Radisson Hotel on Saturday from 11am to 3pm, where volunteers will be available to answer questions and provide information about the disease.

Meanwhile, the hotel will be donating 21p from every cup of tea and coffee bought at the bar directly to the charity.

Learn more about Motor Neurone Disease Association Jersey by heading to their Facebook page here.