More MS news articles for April 2001

Captain Hignell's band on the run

by Kate Battersby
20 Apr 2001

On Sunday, 32,000 runners will compete in the London Marathon. Among them will be the 100 members of the Evening Standard/MS Society team who, between them, are hoping to raise £200,000 to help fight Multiple Sclerosis. Former England rugby international Alistair Hignell, now a BBC commentator, has the disease

The other day at a rugby match, Alistair Hignell met an old friend he had not seen in a long time. The friend noticed Hignell was limping and cheerily enquired what was wrong. Hignell smiled ruefully and replied: "Oh, it's just playing me up." He chose the word "it" deliberately, meaning to be helpful. But alone in rugby circles, Hignell's old friend did not know what "it" was, and replied blankly: "What is? What's the matter with you?"

Still hoping his friend would twig, Hignell said: "You know, the leg sometimes doesn't work as well as it should." But he met only incomprehension, and his friend asked again: "What's wrong with you then?" Hignell was left with little option.

"I've got multiple sclerosis," he said.

It is a year since the former England full-back and Gloucestershire middle-order batsman first delivered the same sentence to his employers at Radio 5 Live and his colleagues in rugby journalism. He was diagnosed on 9 January 1999 at 11.30am, and for 16 months chose to keep it private, until the increasing immobility in his right leg could no longer be publicly attributed to a hip replacement several years earlier.

"It's difficult to be certain when I first had any symptoms," explained 45-year-old Hignell at his home in Bristol. "MS is a disease of the nervous system, affecting the messages the brain sends to different parts of the body. So looking back you wonder.

"My right hand became a bit wobbly. I lost the feeling in the thumb and forefinger about two years before I was diagnosed, but my doctor thought it was a trapped nerve. I had some bladder problems, where I thought normally I'd be able to drink a few pints and get to the loo in plenty of time, and it wouldn't be a rush or an embarrassment.

"I lost feeling in my whole right arm from time to time. I did an interview holding a microphone and saw my hand was shaking.

"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.

© Associated Newspapers Ltd., 20 April 2001