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Saturday, 23 August 2014

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I’m living with motor neurone disease, not dying with it

In June 2011 Fleck Ditchburn, who has motor neurone disease, was rushed to hospital with a chest infection and pneumonia.

Fletcher ‘Fleck‘ Ditchburn photo
Fletcher ‘Fleck‘ Ditchburn

It transpired he had a collapsed left lung and the first few weeks were touch and go. In total he was in intensive care for almost six months.

Now back at home he is nursed 24 hours a day by an eight-strong army of carers, including wife Pat, and uses machines to aid his breathing.

A near-impossible way of life, you might think. But not for Fleck Ditchburn. The 62-year-old is undeniably upbeat. Lucky is a word he uses a lot and his in-built optimism seems unshakeable.

Sitting in the kitchen of his smart house with Pat, he admits people can find this a bit perplexing.

“Some do find my attitude strange. But I am lucky. I am so lucky and privileged to have all this,” he says, indicating his surroundings, his family and his carers.

Pat, who has been married to Fleck for 41 years, agrees he’s always seen the good in things.

“His cup’s always been brimming over. People wonder how we keep going but we don’t behave as if something dreadful is happening, we just get on with it,” she explains. “We still live as normal a life as possible, we’ve just adjusted the goalposts.”

Fleck, of Crossgates, Lamplugh, had symptoms for nearly two years before being diagnosed with the terminal illness in 2009. Soon after he was unable to move his legs or lift his arms more than a fraction, then only his two index fingers.

He has since lost the movement in them and his neck muscles have got weaker over the last year.

His mantra, however, has always been “I’m living with motor neurone disease, not dying with motor neurone disease”.

A spirited, cheeky character, he’s always had a large circle of friends and has been able to count on them for help and support.

He had voice recognition software installed on his computer – which has changed his life – and his mate John Wallis built him an adapted shower and wet room.

Famously, Fleck organised a wheelchair pull-challenge to the summit of Skiddaw in the autumn of 2010, to raise funds for the Motor Neurone Disease Association.

In April last year he started having breathing problems. “I was poorly for a few weeks, at first I put up with it then I gave in,” he says, referring to being admitted to hospital.

Six months in intensive care is highly unusual, because patients either don’t survive or, if they show signs of improvement, are moved to another ward.

Fleck, an electrical engineer by trade and former ICT teacher at Netherhall School, wasn’t expected to pull through and his 175 days set a new record at West Cumberland Hospital.

He was given a tracheotomy and put on a ventilator. Things were critical for the first two months and the next four were spent building up his strength to allow him to return home.

Pat visited him every day from 2pm until 8pm. “We didn’t know if it was going to work. Once he was brought round he had post traumatic stress disorder and was very frightened. He didn’t know where he was and would plead with me not to go.”

His long stint there gave him a chance to get to know the staff.

“In the intensive care unit I saw so much and learnt so much. I couldn’t believe the effort and dedication from staff on the ward. They are so in tune with what care is about.”

In fact he is so grateful he is planning a charity challenge next month to raise funds to buy a piece of equipment for the unit – an oesophageal doppler monitor, which allows non-invasive procedures to be carried out and costs £14,000.

A group of women in Workington called The Golden Girls, who raise money every year and split the funds between Cancer Research and a second good cause, have already donated £2,000.

The second wheelchair mountain pull, up Blake Fell, is planned for June 16. Fleck will be taken to the top – portable breathing equipment and all – by family and friends, and members of Cockermouth Mountain Rescue.

“I nearly died this time last year so this’ll be a piece of cake,” he jokes. “And anyway we’re old hands now,” he adds, referring to the first mountain pull up Skiddaw.

Why did he come up with the idea?

“I wanted to do something for MND. It wasn’t meant to be a novelty stunt. It’s that I was in a wheelchair and was thinking, what can I do with it?”

With the aid of 20 friends and family members including daughter Gemma, and despite strong winds and poor visibility, they made it to the top.

Fleck needed regular physiotherapy stops and they reached the top in around 90 minutes.

“Lo and behold the weather was so bad, the wind was howling and the rain was battering down. At the top you couldn’t see down the valley but then the wind blew that hard, it made a hole in the clouds.

“I could see the view, Derwentwater and Catbells... then the clouds closed again. It was awesome.”

A tent was constructed and they enjoyed a glass of Champagne and launched balloons into the sky before the difficult descent. The challenge raised £8000.

Before his diagnosis three years ago, Fleck was a keen walker, runner, cyclist and wind surfer. He used to go to the gym every day, took part in the London Marathon twice and even kayaked from Allonby to Scotland.

Being so fit all his life made the diagnosis all the more shocking. But Fleck says that instead of missing the activities he used to enjoy, he’s thankful he led such an action-packed life while he could.

“I’d like to get up and pick my grandkids up but I know I can’t. But I’ve done a parachute jump, flown a plane, I’ve done wind surfing, canoeing, I ran a youth club for years, I had my own business. So there’s nothing I think ‘I wish I’d done that...’ he pauses and smiles. “Well... maybe abseiling from a helicopter.”

Blake Fell was chosen for the wheelchair pull because it’s a place Pat and Fleck had always planned to climb. Fleck says he’s “bouncing” and excited about the challenge.

Pat, though, is not so sure. “I’m worried. He doesn’t have the strength he had. But then he’s never done things in half measures.”

Fleck shows me a video that was filmed at the top of Skiddaw when the first charity pull took place, and which recorded the stunning view he witnessed for the final time.

At one point he stops his sentence mid-flow to point out a spotted woodpecker at the birdfeeder in the garden.

He finds a photo of him with grandchildren Olivia, Luke and Jude, and looking at it smiles: “That’s what makes it all worthwhile. That’s what makes you fight.”

It’s clear he’s happy in the moment, fully appreciative of everything around him. And, ultimately, an example to us all.

  • Fleck Ditchburn’s Wheelchair Mountain Pull 2 is planned for June 16, to raise money for new equipment at West Cumberland Hospital. To find out more information about the challenge or donating money, call 01946 862228. Cheques (payable to FS and PM Ditchburn) can be sent to Bridge House, Crossgates, Lamplugh.

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