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Thursday, 17 April 2014

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'I wish I didn’t have MS. But I think I’m coming to terms with the fact'

Which would you rather have – multiple sclerosis or cancer? Duncan Booth wasn’t given the option. He was given MS.

Keswick MS man photo
Duncan Booth with his children, from left, Xander, Leo and Jude

Two years after being diagnosed Duncan feels he is coming to terms with the illness.

But sometimes it kicks him. And sometimes a thoughtless comment has the same effect.

“I was talking to a friend,” he recalls. “Well, I thought they were a friend. He said ‘We were talking about you the other night. We were talking about what we’d rather have – cancer or MS? We thought cancer because there’s a chance of a cure.’”

There’s a bit of disbelief and a bit of anger on Duncan’s face as he tells the story.

“‘I’d rather have cancer’... that really places it from a normal person’s point of view.”

The storm passes. Duncan declares: “I’d rather have neither.”

Duncan is a 41-year-old father of three young boys. He was born and bred in Keswick and still lives in the town with his wife Yvonne.

These are things which haven’t changed since a consultant’s words in June 2010 left Duncan “absolutely devastated.”

Much else is different. Duncan used to be a top-class rock climber. Now he struggles to walk up the stairs.

He has reduced his hours as a teacher at the town’s St Herbert’s primary school, when he is well enough to work at all.

MS is an incurable illness. It affects the ability of nerves in the brain and the spinal cord to communicate with each other. Co-ordination and movement are impaired. Life expectancy can be reduced.

MS is not usually fatal in itself, although it can cause fatal complications. No one really knows how the condition will affect them, or at what pace.

Duncan lists some of his current symptoms:

“Most of the time I have wooden legs. They feel like someone else’s. They feel tired and stiff.

“My feet are always cold. I’m not as co-ordinated. I walk like I’m drunk. I forget everything. I can’t concentrate for long. I’m dizzy. You get out of bed and you’re wobbly. There doesn’t ever seem to be a time when you’re not thinking about it.”

He adds: “I can never get comfortable”, although a few minutes in his company also tells you this.

In the kitchen of the family home at Manor Park he frequently moves from sitting to standing to crouching and back again.

These are not Duncan’s only changes of position. His mind wanders up, down and around MS, wondering what will happen to him and how much he can influence his own future.

He is frustrated and philosophical, worried and optimistic... Duncan is a bit of everything. MS has forced him to realise there are no certainties.

After describing how the illness has restricted him he adds: “But then I look at myself and I think I’m in quite a good way. I met a bloke with MS who’s 34 and in a wheelchair. That’s what everyone thinks someone with MS will be like.

“But you might not be. The MS people say there might only be a few days a month when you need a chair. I think ‘I don’t want one ever.’”

He says he’s never felt angry about having his life altered like this.

“Initially I was, why me? Woe is me. I was looking at YouTube and crying my eyes out at people’s tales of woe. If I’d found a story about a person with MS like me, I might have been a bit happier about it.”

Every day Duncan provides another angle on life with MS. He used to be driven by climbing. When MS took that away Duncan replaced it with sports which help his condition, inspire other MS sufferers, and raise money in the search for a cure.

Last summer Yvonne organised a fundraising walk which saw 120 people climb 10 fells above Buttermere within 10 hours.

Meanwhile Duncan swam across 10 lakes. He became a regular swimmer after a dip in a lake made his ‘wooden’ legs feel better. Now he swims all year, and had to break the ice to get in last winter.

Last year’s walking and swimming events raised £24,000 for the Multiple Sclerosis Society.

Next month sees another challenge. This year’s ‘10 in 10’ takes place from Causey Pike to Maiden Moor on Saturday June 23.

About 150 walkers are expected and the event will be sponsored by outdoor brand Berghaus, after a request from Sir Chris Bonington.

Duncan will be rowing up and down Derwentwater during the previous night, attempting as many miles as possible in 10 hours.

The walkers include friends, family members, and people he’s never met.

“What surprised me was the amount of people who I didn’t necessarily know. There were folk from London and all over the shop ringing up.”

Closer to home, St Herbert’s pupils will tackle their own 10 in 10 with activities in the school field.

“They all know I’ve got MS,” says Duncan. “I got ‘Can you catch it?’ The kids are great. They haven’t changed with me at all.”

As for his own kids, eight-year-old Leo and five-year-old Xander have had daddy’s illness explained to them. They helped collect sponsorship money last year.

Jude, three, is a little young to understand. While Duncan is interviewed Jude is dressed as a pirate, swinging a sword and, in an interesting twist, getting daddy to feed jelly to a toy dinosaur.

This is a man with a huge incentive to stay healthy. Carrying the kids upstairs is a struggle he couldn’t bear to lose.

Yvonne has been a huge support. They’ve known each other since they were Keswick School pupils.

“She’s been an absolute bloody rock. She’s the one who’s raising all the money by organising the walks.”

People tell Duncan that he still looks fit, and indeed he does. He’s lean and tanned, with just the odd wobble to betray what’s happening on the inside.

People ask him if he’s ok. Sometimes he feels like saying No, I’m devastated, but he knows that’s not the done thing.

Anyway: “I’ve been through all that being upset with it all and crying. It’s not easy. I wish I didn’t have it. But I think I’m coming to terms with the fact that I’ve got something wrong with me.

“What blew me away was some of the statistics. About 100,000 people in the UK have MS. Fifteen per cent kill themselves. I think, well I’m lucky then, aren’t I?

“You don’t generally die of it. But JK Rowling’s mum had it and died at 45. You think, I’m 41.

“Nobody knows what’s going to happen. You could walk out of here and a bus could hit you. But it is going to hit me. I might be 80, I might not. That’s the weirdness – not knowing.”

Duncan thinks the enforced change is so great that in some ways he’s become a different person.

“I’ve had two lives,” he says. “One up to the age of 39 when I was a climber. And now I’ve got this new life. It’s just different.”

Jude is demanding attention. Duncan lifts him up and nuzzles the boy, who responds with a laugh. Now dad’s laughing too.

“What a life, being three. It must be great.”

To sponsor Duncan’s row on Derwentwater visit www.justgiving.com/Duncan-Booth1

To take part in or to sponsor the 10 in 10 walk visit www.acs-events.co.uk/challeng/10-in-10/

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