'He shed a tear... then my Adrian was dead' of husband's death from CJD

'He shed a tear... then my Adrian was dead' of husband's death from CJD

July 14, 2001  Daily Mail (London) by Graham Grant

AS Adrian Barras lay in bed unable to tell his new wife how much he loved her, and with only minutes left to live, a single tear slid from his eye.

Drained by the experience of watching her husband's gradual disintegration as CJD stripped him of his ability to walk and talk, Susan Barras held him her arms, awaiting the inevitable.

Nursing him in their home in Hamilton, Lanarkshire, where he died earlier this week, she saw at close quarters the devastating effects of the illness which transformed him from a bright, articulate and literate young man to an invalid.

Mr Barras, 26, Scotland's 15th victim of the human form of mad cow disease, died just eight weeks after his wedding and three months after he was diagnosed with the disease.

Variant Creutzfeldt- Jakob disease has now affected 86 people in the UK and claimed the lives of 73.

Despite the rapid spread of vCJD through his body, Mrs Barras is adamant her husband's mind was intact until the day he died, even though academics and doctors told her it was impossible for the mind to survive the ravages of the untreatable disease.

Yesterday, Mrs Barras, 38, told the Scottish Daily Mail: 'I loved him so much and to see life draining away from him was like a horror movie.

'But right up until the end, he knew what was going on. He lived with the knowledge that he was going to die, but he still wanted to get married.' The marriage, in May this year, had been 'spontaneous', Mrs Barras said, but triggered by a sense of panic Mr Barras began to feel every time she left the house a panic that she might never return because his illness was too much for her to bear.

The couple met three years ago while both worked for technology firm Jabil Circuit, in Livingston, West Lothian. Mr Barras grew up in nearby Armadale.

Mrs Barras said: 'Adrian was a romantic. Even after we moved in together, if we were on different shifts at work he would leave love notes around the house and phone me on my break.' It was during a holiday together in January this year that Mrs Barras spotted what she later learned were the first signs of vCJD.

'It was easy at first to pretend there was nothing wrong with him. It is an insidious disease, it seeped into him bit by bit. But he was talking a bit strangely, not exactly slurring his speech but it was distorted.

'Then he started stumbling. When I asked him why he was falling over things, he just said, "My legs are not doing what I'm telling them".

'Adrian was always well-organised and meticulous. But slowly all that changed.' After seeing his GP, Mr Barras was admitted to Hairmyres Hospital in East Kilbride, Lanarkshire, on February 5, before being transferred to Glasgow's Southern General Hospital for tests. Mrs Barras, who has two children, Mark, 18, and Andrew, 14, said: 'He was never concerned with himself, only what I would do after he died, and what would happen to the children.' The couple's wedding took place at Hamilton Register Office on May 15.

They had to obtain special permission from a psychiatrist to check Mr Barras was fully aware of what he was doing before the ceremony could go ahead.

Mrs Barras's mother, Beth Thomson, 55, said: 'On the day of the marriage, he was the happiest man on earth.

'He was a lovely lad. He was an intelligent young man and to see him reduced to living like that was nightmarish.' Just before the illness struck, Mr Barras had applied for a job with the Ministry of Defence as a debugging technician and had passed the first interview. Mrs Barras said: 'It is amazing to think he could pass a complex interview like that such a short time before the illness was diagnosed.

'The end came quickly. Two weeks ago, he was in a wheelchair and talking to us. It was horrific to watch him in those last days. He could only communicate by using facial expressions.

'On Tuesday night, my mother told him that we all loved him very much but it was time for him to let go. A single tear slid down his cheek, just a single tear. Half an hour later he died in my arms.' Amid the sorrow, Mrs Barras and her mother feel a sense of resentment that they did not get enough help to care for Mr Barras as he died. Only limited help and guidance was offered throughout.

There were complications accessing GBP 25,000 given as compensation by the Government and held in trust, and the family had to pay for prescriptions.

Mrs Barras said: 'Adrian liked burgers but no one knows enough about what causes vCJD. This is a Government-induced disease but the Government does nothing to help. This is going to claim more and more lives.'

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