Colin Knight says that having motor neurone disease is like being handed a ticket for a destination you know - via an unknown route. It's his way of making a joke out of the devastating diagnosis that was confirmed a year ago.

The former Lealands High pupil is full of self-deprecating humour. When the consultant delivered the verdict, Colin joked: "Does that mean I don't have to do the ironing any more?" And he chuckles: "He did a double take - he wasn't sure if I was aware of the significance of what he was saying."

But both Colin, 50, and his wife Helen, 37, were acutely aware. Each had lost friends to the disease and each had suspected privately what the diagnosis would be. When their worst fears were realised, they went home and wept in each other's arms.

Colin says: "I thought, what have I done to deserve this? I've never been in trouble with the police, never stolen anything, never been nasty, never taken drugs, never been out of work. I've led a clean and comfortable life.

"Then I thought do I deserve it? No. Does anyone deserve it? No. But I've had 50 good years and we're all going in the same direction."

Colin, now living in Turvey and chairman of the parish council, is determined to beat the illness that claims 1,600 lives a year. He has just enrolled on the MND Association's first clinical trial and has shunned pain relief because he believes it weakens the body's immune system.

He is, by his own admission, a bit of a lad. He joined his dad's Sundon Park plumbing firm after leaving school and spent all his spare time playing rugby or racing motor cycles. And even though he retrained as a chartered engineer, he kept up his love of physical sport.

So when he started having problems a couple of years ago, he put some of it down to spending much of his working life on his knees and the rest to recovering from injuries on the field or coming off his bike.

The first time he had an inkling something was wrong was when he and Helen were on holiday in the north east of England. "On this particular day we decided to walk Hadrian's Wall and I was really struggling," he recalls.

"That Christmas Helen bought me a new pair of boots. They had a mind of their own. Every time I wore them we'd crash into each other and down I'd go. I had no control. My knees were really bad. It was like a cramp, that pain in your bones. I was 45 and put it down to wear and tear.

"The following Easter we went to Devon with our rescue dog, Trevor. Every morning we'd go to the beach and it took me hours to get back. I thought this is it, it's beginning to impact on my life. So I saw the doctor who organised an arthroscopy to remove damaged cartilage. I had physio and it should have been getting easier but it was becoming more and more painful.

"I was an usher at a friend's wedding. It was absolute agony. Tripping became second nature and I started using a stick to steady myself."

Alarm bells only really started ringing when Colin came home one day and tried to move his wife's car. "I couldn't get my foot off the throttle," he says. "I frightened myself to death. At the back of my mind I thought I might have MS."

He went for a series of horrendous tests: an electric current was run through probes in his arms and he had a muscle biopsy. But the diagnosis wasn't clear and Colin was advised to get a second opinion.

He was sent to the National Hospital in London which specialises in neurological disorders. Colin says: "It was a baptism of fire. Suddenly I was surrounded by people - some worse and some better than me. One could only do three functions for himself - blink, smile and laugh. It was a real roller coaster of emotion."

But again the results were inconclusive. Colin was told it might be motor focal motorneuropathy, which was treatable. He admits: "It was like a weight off my shoulders. I was elated. I started having infusions which they thought would cure me. The first was fine - I could move my toes. I went back for three more. It was obvious the drug wasn't working and the consultant said she was positive it was MND after all.

"I decided I was going to prove her wrong. We'd been through some rough patches and come out the other side, so we just had to get on with it. I'm not quite the same as I was but Helen and I still enjoy life and we do as much as we can. She's a very special lady.

"The MND Association have been absolutely wonderful. They've given me so much, including financial help for a stair lift and electric wheelchair. I've just been accepted as a volunteer so I'll be able to speak to people who've just been diagnosed. We'll be able to talk through their fears and woes either face-to-face, by email or on the telephone.

"One of the best things I learned was that MND is something that lives with you, you don't live with it. I rule its life."

Colin firmly believes that not taking pain killers gives him an edge and will push the end result. He's equally keen to take part in lithium trials which may provide a breakthrough in treatment. "If I can do something to make MND a thing of the past, I will. There could be side effects with liver function but if people don't try these drugs, we'll never find a cure."

Immensely positive, he claims he's not brave enough to take his own life and wouldn't consider ending it all at Dignitas, the Swiss charity that helps people commit suicide. "It's some people's way of making sure they're not a burden on other people," he says. "But life is so special, you should make the most of every day that's given to you.

"Yes, I'm disappointed I've got MND. But the time Helen and I have had together has been brilliant - and the time we've still got will be brilliant.

"Stem cell research is going to bring a whole new outlook not only to MND but to medicine in general. I dream of the day when there's an announcement on News at Ten that there's been a breakthrough. If they can find a cure within the next five years, it gives you hope. And even if it's not in time for me, it will help someone. And that's what keeps me going."

>> If you'd like more information on MND or would like to make a donation, call 01604 250505 or email enquiries@mndassocation.org