Captain Hignell's band on the run

"Later, I was sitting here in our living room holding a glass of red wine, and I was spilling the wine without realising it. I went back to the doctor and said something was worse. So I had an MRI scan and they told me.''

MS has no known cause or cure, and is the most common neurological disorder among young adults. Usually diagnosed between the ages of 20 and 40, it affects 85,000 people in Britain. Hignell learned this much from the Multiple Sclerosis Society website on the day he was diagnosed. "My wife was away on a business trip, the highlight of her career, so I had four days with just me knowing before I told her.''

He laughed blackly: "I said, 'Welcome home, darling . . .' But she was brilliant. Her first response was, 'It's not your MS, it's our MS. It affects both of us.' Each day we have the MS half hour where we moan about it. Then we try to wrap it up so as not to dwell on it.

"Our sons are 19 and 17 now. I don't think they understand it. It hasn't changed them in any way, which can be deeply frustrating. They're typically self-obsessed teenagers who don't lift a finger for either their mother or me - although Adam, the elder one, offered to get me some really good cannabis. 'No problem, Dad,' he said. I haven't taken him up on it yet.''

Initially, Hignell was optimistic, because a cousin of his who was diagnosed with MS in 1993 had one dreadful attack - blindness and paralysis for several months - yet subsequently made a full recovery and never had another attack. But Hignell was to learn there are four types of MS.

Benign - the kind his cousin had - generally features a solitary attack which lasts up to six months.

Relapsing, remitting MS is the most common, featuring recurring attacks with periods of normality between.

Secondary-progressive MS is a downward slope, featuring recurring attacks with decreasing recovery between.

Primary or chronic-progressive MS is a swift debilitation into a wheelchair.

"The signs are I have secondary progressive," said Hignell. "But there is no way of knowing how steep the slope is. I am on that slope, though ... I can feel it.''

Only one drug, beta interferon, can help. But it costs £11,200 per patient per year. According to the National Institute for Clinical Excellence, "its modest clinical benefits are outweighed by its cost", so it is not available on the NHS.

Thanks to enormous fundraising efforts among the rugby community, Hignell has been giving himself thrice-weekly injections of the drug since July last year.

"I feel bad because I'm privileged," he said. "You can get it everywhere else in the world and it's a scandal it's not available on the NHS. Investments permitting, there is enough money for me to take the drug for 15 years. I'm overwhelmed with gratitude and feel very humble. It's not a cure, but it's something, and for me it's the only thing holding back a frightening disease."

In return he invests much of his scant energy in supporting the MS Society, the official charity of Sunday's London Marathon.

Hignell is acting as their non-running captain, and will be at the finish line to welcome the achievers. One hundred Evening Standard readers were given berths in the Marathon on condition that they raise at least £2,000 sponsorship each in aid of the MS Society - money Hignell says is hugely important.

"The Society will make sure it goes to the right places," he said. "It always stuns me when people rally round like this. My mates in rugby journalism came good for me. The number of good people out there is amazing, so caring and generous. It is life-affirming to find that people are so good."

So much of his own future, however, remains unknown.

"Am I afraid? It's best not to think about it. But I have to consider the worst-case scenarios because they may happen. Already we are having to sell this beautiful house, where we have lived for 12 years, because the stairs are bloody hard work. What if it affects my eyes or my voice so I can't work? I'm angry because of the limitations it imposes. I get knackered and annoyed. Sometimes I stagger and it looks like I've been imbibing. People must think, 'Drunken old fool.'

"But being afflicted - terrible word - has made me much more aware of people who are not as blessed as I was for 40-odd years of my life. Truly, it could be worse. A friend's daughter died a few years ago when she was 15; now his son is terribly ill. All things have their context.

"MS can shatter your life. It's not life-threatening but it is life-ruining. It depends whether I'm in the glass-half-full or the glass-half-empty frame of mind. Sometimes it almost helps that so little is known about the disease. It lets me think that somehow or other I will be okay."

Donations may be sent to the MS Society at 372 Edgware Road, London NW2 6ND. Telephone: 020 8438 0700.