A man, who went into locked-in syndrome and now needs 24-hour care due to a rare illness, has taken part in the Darlington Parkrun - with a little help from his friends. PETER BARRON reports

WHEN your life has been devastated by an illness you’ve never even heard of, and you’re left needing 24-hour care, the moments of joy – fleeting though they may be - are utterly priceless.

And, for Ken Longstaff, 63, the experience of being involved in the Parkrun – amongst hundreds of others in Darlington’s South Park – was simply unforgettable.

“Just being able to feel the wind in my face – that was lovely,” says Ken.

In his younger days, Ken was a keen cross-country runner and fell-walker, but now he’s confined to a wheelchair by Guillain Barre Syndrome, a rare neurological condition, which left him in a locked-in state for seven weeks when it first struck with terrifying brutality.

But Ken doesn’t feel any anger – just “disappointment” that he can’t do the things he wants to, and lucky that he has the love of his family and friends who are there for him… when push comes to shove.

Such was the case with the Parkrun. During visits to the park in his wheelchair on Saturday mornings, Ken would get a buzz from seeing the Parkrunners go past, and he struck up a friendship with Ian Burgess, a veteran Parkrunner, who would always shout and wave as he ran past.

During one of their chats, Ken mentioned how he’d love to take part, and Ian’s response was to go away and make it happen. He called on the help of Fred Tennant and Simon Daniels – two fellow members of a social running group based at the Up and Running shop – and the three of them took it in turns to push Ken round the Parkrun in his lightweight wheelchair.

The three laps of the park – past the aviary, down to the bandstand by the duck pond, along the side of the River Skerne, and up the nasty little Squirrel Hill – they completed the course in a time of 33 minutes, leaving Ken feeling exhilarated.

And, in the process, he was able to raise valuable funds for the Clifton Community Centre at St Colomba’s Church, in Clifton Road, which has been left in debt by the impact of Covid-19.

“I loved it, it was amazing,” smiles Ken. “To experience the friendship all around – the clapping and cheering – and the speed in the fresh air after such a long time.”

It’s actually nine years since Ken’s life was torn apart by Guillain Barre Syndrome. A father-of-two, he worked as a mechanic and was perfectly fit and healthy.

Then, at Christmas time in 2012, he went for a meal with the lads from the garage and felt ill during the night.

He insisted on going to work the next day but came home early, suffering from blurred vision on the drive home. He went blind in his left eye and he looked in the mirror to see the pupil was fully dilated.

With his balance also “all over the place”, Ken thought he’d had a stroke and he was admitted to Darlington Memorial Hospital for tests. His condition deteriorated to the point at which he could hardly breathe, he went into respiratory arrest, and then locked-in syndrome. It was five days before Guillain Barre Syndrome was diagnosed.

Today, Ken needs 24-hour care: he’s had a tracheotomy and relies on a ventilator to breathe; he can’t feed himself; has to drink through a straw; and requires a hoist for bathing, going to the toilet, and to get him into bed.

He has the support of a care company, but much of the burden still falls on Bev, the woman he married 40 years ago this December. They have a son and daughter, James and Jaki, and two grandchildren, Max, seven, and Finn, five.

“It’s totally screwed up our lives to the extent that we have to rethink everything we do,” says Bev, a patient administrator at The Woodlands Hospital, in Darlington. “Going for any kind of holiday has to be in this country and is a major challenge because of the amount of equipment and medicines he needs. It’s just been one long nightmare.”

Despite it all, Ken still has his dreams, and taking part in a Parkrun happened to be one of them. He’ll, therefore, be forever grateful to his gallant ‘pushers’ – Ian, Fred and Simon, who were resplendent in their Up and Running yellow t-shirts.

“It was a pleasure and a privilege,” says retired lorry driver, Ian. “The running community is very friendly and helpful, and we do what we can. We run for all kinds of good causes, and Ken has become a special friend. We’re just happy it meant so much to him.”

So, what’s the next dream? “I’d love to be able to get in an aeroplane, so I can go and see the Northern Lights,” says Ken.

Who knows? Perhaps someone out there might be able to give the idea a little push in the right direction…

  • To make a contribution to Ken’s appeal in aid of St Colomba’s Church community centre, go to: www.gofundme.com and search for ‘Clifton Community Centre Fundraiser’.
  • Next week, how Ken – and others who need help – are finding sanctuary in a magical area of woodland, hidden away in Darlington.

LIKE so many others over the past 18 months, Godfrey Irving has been touched by the tragedy of the Covid-19 pandemic.

His brother, Michael, was among the 139,000 people who have so far died from the virus.

Godfrey is a member of Barnard Castle Rotary Club, and his response was to suggest a living memorial to those who have lost their lives.

The result was a ceremony at St Mary’s Parish Church last Thursday, when a rowan tree was planted by the Town Mayor, Councillor Rima Chatterjee, following addresses by Dr Robert carter, who co-ordinated the vaccine programme at the Richardson Hospital, and Reverend Canon Alec Harding.

The Northern Echo:

The ceremony will be followed by a weeping cherry tree being planted at Holy Trinity Church, in Eggleston, tomorrow, and another rowan being planted at Glebe Garden, in Cockfield, on Friday.

“So many people have suffered losses, and I thought it would be a nice way to commemorate a time like no other,” explained Godfrey.

It was a privilege to be there to see his splendid idea take root.

FINALLY, news of a reunion of golden oldies from The Northern Echo’s past.

The paper’s former columnist, Mike Amos, has organised a get-together for pre-1986 editorial staff , including those who worked for The Northern Echo, Despatch, Darlington & Stockton Times, and the Durham series of free papers.

It takes place on Friday, December 10 from 2pm at Darlington Cricket Club. The cost will be £15 per person, to cover a buffet, with any surplus going to charity.

“It would simply be great to see folk,” says Mike, who can be contacted at Mikeamos81@aol.com