‘A noisy old geezer for MND’

But nothing prepared the boss of Bullet Point Media for the news he received last October when he was diagnosed with motor neurone disease and told he had as little as two years left to live.

“I was in denial,” he says now. “I didn’t want to find out anything about it. The effect on your family is terrible.

“I dropped out of work for a while. But now the business is up and running again and work is what I want to do.”

MND is a progressive disease that attacks the motor neurones, or nerves. It has no known cause or cure and its celebrity victims include actor David Niven, England football manager Don Revie, journalist Jill Tweedie and more recently former Ofsted chief Sir Christopher Woodhead.

Sir Stephen Hawking has beaten the odds and survived, albeit in a wheelchair and with a synthesised voice.

Stephen Rhodes is determined to do all he can to raise money and awareness of the disease that is slowly taking over his body. “I’ve always been a noisy old geezer and now I’m going to be a noisy old geezer for MND,” he says. “It’s a horrible nasty old thing and I want people to think about it and give their support.”

His third wife Greggy, sons Nick and Jack and stepson Sam, daughter Beck and her husband Mark are already organising marathons and researching the web for anything that might delay the disease’s deadly onslaught.

His brothers and sisters – he’s one of eight – all wanted to come over from Ireland when they heard the news. But Stephen, 64, put them off. “I find it difficult dealing with people who feel sorry for me,” he explains.

Daughter Beck simply invited the family to join them for Father’s Day in June and his brother Alan quipped: “Don’t get emotional – we all love a party.”

Stephen claims he’s always been “fit as a fiddle” – apart from a bad back. A water ski-ing accident in 2013 led to an operation but his right leg remained weak.

A different consultant referred him to a neurosurgeon who told him in “all likelihood” he had MND.

Stephen says: “It’s such an unusual disease and it’s relatively rare. Most GPs will only see one case in their entire careers. The worst thing is it gives you no hope.”

He admits losing his independence is his biggest fear: “I dread the time when I won’t be able to do anything for myself, when I’ll need someone to feed me and help me wash.

“I was brought up a good Catholic boy and I’m a big fan of Christianity. I’d like to believe, it would be so handy.”

But he doesn’t remain down for long and says: “I’ve met lots of lovely people with MND. It’s like belonging to a very special family.”

> Help raise money for research at www.justgiving.com/godfreykeenan or text KEGO50£ (amount) to 70070.