‘I’ve got MND like Rob Burrow – I realised when I Googled my symptoms’

Motor Neurone Disease: Expert on early signs and symptoms

When dad-of-one Bob Gledhill first experienced some weakness in his left arm he attributed it to an injury he had recently sustained.

However, when the muscles in his arms started to “waste away” the ex-builder sought professional advice.

This led to a heartbreaking diagnosis of motor neurone disease, or MND, a rare condition that affects the brain and nerve, causing progressive weakness.

More than two years on since his diagnosis Bob, 55, has seen his condition deteriorate, requiring a walking frame to get about.

Now Bob, from Carmarthen in Wales, has shared his story with Express.co.uk, in the hopes of raising awareness of the life-limiting disease.

It comes as Express.co.uk has launched a campaign to see former rugby teammates and MND campaigners, Rob Burrow and Kevin Sinfield, knighted for their efforts.

Bob explained: “With hindsight I probably had symptoms from the winter of 2019 to 2020.

“I noticed I was getting weak in my left arm. I had suffered an injury in my shoulder so I put it down to that. But it got worse in the winter. The following winter I could see the muscle was wasting away – just in my left arm.

“I first went to a physiotherapist as I supposed it was to do with my old injury. They said, ‘This is not a physio problem’.

“He said, ‘I think you better go to the doctor and you better go this afternoon’.”

At his local hospital Bob was referred to the neurology department, which carried out a number of different tests.

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“Getting a diagnosis for MND uses a process of elimination where they work out which conditions it isn’t,” he said. “You are then left with nothing else it can be.”

An official diagnosis of MND followed a couple of months later, which came as a “blow”.

Bob recalled: “I had a bit of an inkling because of ‘Doctor Google’. I read some stuff and thought, ‘That’s exactly what’s happening to me’, so it wasn’t a complete shock. But when it was confirmed it was still quite a blow.”

Bob’s condition quickly began to worsen. “Soon afterwards I noticed my legs were getting weaker,” he said. “My balance started to go and I was tripping up more frequently.

“With MND, it’s not like you wake up and think, ‘I can’t do that’ suddenly. It’s a slow process over months.”

Throughout his journey Bob has been supported by his wife, Lowri, and their 18-year-old son, William.

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Following his diagnosis the pair joined Bob on a fundraising mission for various charities, including the My Name’5 Doddie Foundation, under the name Motoron Cymru.

Along with other friends and families they have raised more than £100,000 for charity completing tasks such as the UK three peaks challenge and the Welsh three peaks challenge.

However, Bob believed the impact of the diagnosis has been tough on Lowri and William. He said: “I think the effect has been great on them. We are all quite helpless. There’s not really much that anyone can do.”

Bob was prescribed riluzole, a drug used for MND treatment and is also currently participating in the MND-SMART trial after campaigning to bring it to Wales.

But aside from this, there is nothing the doctors can do.

“It was ‘You have MND’ and that’s really it,” Bob said. “It’s very open ended.

“All they can really tell you is life expectancy from diagnosis is about two and a half years. That’s only average.”

He backed the work of Rob Burrow and Kevin Sinfield who have raised more than £8m for MND charities since Rob’s diagnosis in 2019.

Bob commented: “Obviously the work they have done is magnificent isn’t it. To get that into the millions is astonishing.

“We should be spending more money on MND research. It seems like research into it has been on the back burner for a while.”

For the moment, Bob is “carrying on” with life in the best way he can. He added: “One the one hand it’s a terrible thing.

“On the other hand life still goes on for everyone else. All of that just continues as normal as can be.”

What is MND?

It is thought up to 8,000 people in the UK are living with motor neurone disease at any time.

MND affects nerves found in the brain and spinal cord known as motor neurons, which tell your muscles what to do.

Over time this causes weakness across the body. It also significantly shortens life expectancy, eventually leading to death.

According to the NHS, early signs of MND can include:

  • Weakness in your ankle or leg – you might trip, or find it harder to climb stairs
  • Slurred speech, which may develop into difficulty swallowing some foods
  • A weak grip – you might drop things, or find it hard to open jars or do up buttons
  • muscle cramps and twitches
  • Weight loss – your arms or leg muscles may have become thinner over time
  • Difficulty stopping yourself from crying or laughing in inappropriate situations.

If you experience symptoms of MND you should speak to your GP.

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