Meet the Cheltenham Festival-winning jockey tackling an incurable disease with positivity

This interview with former jockey Steve Jobar about living with motor neurone disease and his plans to make a difference was originally published on May 25 and has now been made free to read. For more exclusive interviews with the biggest names in horse racing and in-depth features, analysis and tipping, sign up to Racing Post Members' Club.

A life is laid out on a table. 

That table is large, and it needs to be, for adorning the varnished wood are pictures too numerous to count. There are photographs and press cuttings, some in colour, others black and white. The vast majority show horses, most jumping a fence or hurdle while carrying the light-framed man who now moves around the table with a head full of memories. 

The table tells the story of Steve Jobar's past. The brutal reality is the next chapter of his life will eventually be less pleasurable to document.

More than half that life has been lived since Heighlin put his head in front right at the end of the 1980 Triumph Hurdle, thus providing Jobar with the most important success of a race-riding career that yielded 135 victories over two decades. One year earlier he met Dottie Channing-Williams, with whom he shares a home in Wickham near Newbury. Jobar and Channing-Williams have been together for 44 years but married only last June. Aside from enduring love, there was a reason why the knot was finally tied.

Just over a year has passed since Jobar discovered he has motor neurone disease, the nerve degeneration condition that last year claimed Doddie Weir. The Scottish rugby union legend spent the closing stages of his life raising money to fund research into MND, a mission that continues to be fought by 40-year-old former rugby league star Rob Burrow. With 34-year-old Gloucester forward Ed Slater last year forced to retire following his own diagnosis, there has never been a time when MND has been more in the public consciousness. Jobar and Channing-Williams want to make sure the racing community is listening.

Jump jockey Steve Jobar is surrounded by reminders of his past gloriesCredit: Edward Whitaker

To those who do not know Jobar, it is almost only the sound of his voice that indicates all is not well. It was because of his suddenly slurred speech that friends including John Francome last year began to raise concerns. Jobar sounded drunk when completely sober. He knew himself that something had changed.

"This disease is insidious," says Jobar, yet he does not want to be defined by that disease. He is, however, perfectly happy to be remembered for what he did in the years that followed the signing of a three-year apprenticeship with Alec Kilpatrick as a 15-year-old boy who had travelled from Sheffield to Herridge. In particular, he takes pleasure from talking about horses such as Pacify, with whom he landed the 1980 Midlands Grand National, and the David Elsworth-trained Heighlin, the enigmatic 40-1 winner of the Triumph one month earlier.

"He was bought out of Henry Candy's yard and they cheered when he left," says Jobar, whose one and only taste of festival glory came on the horse he later guided into second in the following year's Cesarewitch.

"Having worked in racing for so long, it was really quite surreal," he admits. "I had never given up hope of winning at the festival and I had always tried to keep myself in good condition, even when I wasn't riding that often. I never used to let myself go."

That attitude should now serve him well. With a sleeping cat beside him on the sofa, Jobar makes clear he has no intention to wave any white flags. He is living, not dying, with MND. Although tiredness takes hold of his body more easily than was once the case, Jobar still works as a builder and regularly competes in glider races, maintaining a passion that has burned within him for 47 years.

"It's regarded as a safe sport but you always wear a parachute in case things go wrong," he says. "Mid-air collisions are the biggest danger. The most dangerous gliding is when you're in the mountains as you tend to be only two to three metres off the rock face while travelling at 120 miles per hour. I think when I was riding I lost only one colleague. I've lost seven when flying."

The gliding symbolises a love of travel. Jobar proudly holds up a photograph that captured him stood atop Hawksbill Rock in Antigua earlier this year. More trips are on the agenda, although there is an acknowledgement shared between husband and wife that how the future unfolds is beyond their control. There is no cure for MND but nor is there a definitive manner or timescale for its development within each patient.

Jump jockey Steve Jobar looks at a picture of himself with his gliderCredit: Edward Whitaker

"Every time you hit a problem, it becomes more difficult to get over it," says Jobar.

"Now that my speech is much worse than it was, my ability to eat is much worse as well. Swallowing isn't easy but chewing is very difficult. I can't open my mouth wide or move things about. If something gets stuck at the back of my mouth, I can't bring it forward, so the Motor Neurone Disease Association always has a concern about people choking to death. I don't taste things much now, either."

Jobar adds: "MND affects everybody at different speeds. You can never know how quickly the wheels of the disease are going to turn. However, in my mind, the less you do, the quicker it will develop.

"I use each day the best I can and, more or less, do as much as I can. We are still making plans to do things in the future, but I know there may come a tipping point when I'll have to accept a lesser quality of life. I haven't got there yet."

Jobar is far from the only racing person to have been diagnosed with MND. Macer Gifford, Jeremy Hindley, Colin Nash, Mikey Heaton-Ellis and Alistair Haggis all died with the disease. At some point, Jobar's name will be added to that list, but before then he and Channing-Williams want to make a positive difference, which means that with the help of close friend Jonathan Powell they are organising a fundraising afternoon at Newbury on Friday, March 22 next year.

There will be a sponsored race and a Mike Cattermole-hosted lunch for more than 400 people, during which Francome and trainer Richard Phillips will oversee an auction whose lots include a specially commissioned Peter Curling painting of Jobar and Heighlin. The money raised will be split between research into MND and Jobar's local MNDA support team.

Jump jockey Steve Jobar with his wife Dottie Channing-Williams at their home in WickhamCredit: Edward Whitaker

"They will do anything to help and have been absolutely amazing," says Channing-Williams, who stresses that whatever happens in the future, she wants it to involve her husband.

"Perhaps I'm being selfish, but I would rather have him here with me, no matter what I have to do to keep him here. I also feel I have to be strong for Steve because we have to get through this. I find talking about it difficult, though. The disease is so cruel. When you have dementia, you don't know you have it. With MND, you do know what is happening to you."

Jobar certainly knows but, like his wife, displays remarkable positivity in tackling a disease that affects up to 5,000 adults in the UK at any one time.

"I think it's easier for me than people like Rob Burrow and Ed Slater," he says. "They are young men compared to me. They have young families, whereas I'm 74. Our main life has been lived. We don't feel cheated – but the fact I might leave Dot to finish off her life without us being together is always in the back of my mind."

Jobar adds: "People talk about the physical side of MND but, for me, the mental side is just as strong. The disease pushes you to give in to it, so you have to fight back hard. That's my attitude – but nobody can tell me if that's the right or wrong way because so little is known about the disease."

If you want to help the MNDA's quest to learn more, there is a rather nice lunch taking place at Newbury next March. 

Click here to learn more and donate to the Motor Neurone Disease Association

Members' Club Ultimate subscribers can read more of Lee Mottershead's articles here: 

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