The diagnosis and its delivery were brutal: "You've got an incurable disease, it's motor neurone disease. I suggest you just go back to the office and get your head down.
"Only a couple of years after losing his 43-year-old wife to a hospital-acquired infection, those words meant John Trewavas was having to face his own demise from a progressive, disabling and incurable illness. He had first started showing weakness in his right arm in 1993, when he was 51.
At first, doctors thought he might have carpal tunnel syndrome, tenosynovitis, or even a reaction to an anti-malaria drug. The diagnosis of MND was eventually confirmed in 1996 after further tests. MND is the name given to a group of related diseases affecting the nerve cells through which the brain sends instructions to the muscles. Over time, muscles weaken, leading to problems with movement, speech, swallowing and breathing. Its most famous sufferer is Professor Stephen Hawking.
John believes his illness was linked to the traumatic circumstances surrounding the death of his wife, a nurse who had gone into hospital for colon cancer surgery four years earlier. "The operation was relatively successful, but she got an infection which we assume was MRSA. I had to initiate the decision to turn off her life support," he recalled.
At the time he was working as the finance director of a large hospital, handling an £80 million annual budget. He had a teenage son and daughter to worry about and was given no time to grieve. "I was told I should take two weeks to get over it, then they expected me to get back into harness. I held it together, but I think something had to give," he reflected. "I don't blame anybody. It happens. I don't ask the question `why?' I have to get on with it and make the best of it." John carried on working at the hospital until 1996, when he took early retirement and enrolled on a post-graduate teaching diploma.
He became a senior university lecturer, took on a part-time finance director's post, developed a BSc programme in healthcare infomatics and became a trustee of a respite care charity and a school governor.
After retiring for the second time, he decided to tackle an MA at Birkbeck College in London. His dissertation was on the benefits of lifelong learning to health.
John, who lives in Highcliffe, believes his own illness has been slowed by keeping busy and concentrating on his abilities, not his disabilities. "I think that may have delayed its progress substantially. If I'd sat around and brooded, I wouldn't be here," he said. The average life expectancy for someone diagnosed with MND is between one and five years after the onset of symptoms, although Professor Hawking has so far survived more than 40 years since being diagnosed at the age of 21.
After more than a decade with the disease, John's right arm is virtually useless and his left arm and hand are deteriorating, but he keeps as active as possible. He has successfully tackled part of the Inca Trail in Peru, has volunteered to be a tutor on the NHS expert patient programme, been asked to stand for election as a national trustee for the Motor Neurone Disease Association and is thinking of doing a doctorate. He is also treasurer of the New Forest Ramblers group and the local Conservative Association, and is involved with the University of the Third Age.
"At times I do feel very vulnerable," he admitted. "I try to avoid stressful situations and try to allow a lot more time to do things. I gave up driving about four months ago and that has had a devastating effect on my morale and independence.
One thing I can do is walk; I'm a very active member of the Ramblers and very often will walk 10 miles quite happily." He tries to end each day in an uplifting way. "It might be a television programme, some nice music, or a phone conversation with friends. I find some way so that when I go to bed, I'm happy," he said.
"I try to live my life in five year periods - my teaching career lasted about five years, and as that came to an end I focused on the Masters. I'm now trying to focus for the next five years. I need a goal to aim for. If I can't do physical things, I can use my mind.
