As Motor Neurone Disease Awareness Month draws to a close, Heather Smith tells MARION SAUVEBOIS how her partner Steve, who lost his life four years ago, gave her strength to carry on and support others living with MND

STEVE Atkinson was not your typical patient, or your average man for that matter.

Far from crumbling, dissolving into a flood of tears or a fit of rage, as the neurologist explained the uncontrollable muscle twitches in his neck were unmistakable signs of motor neurone disease - an incurable condition which would progressively take away his ability to move and, eventually, to breathe – he locked eyes with the consultant and said: “Well, my golf is not going to get any better then.”

Or so he related the moment his life was shattered to his partner Heather seven years ago, in the only way he knew how – refusing to dignify the unbearable condition with resignation, fury or despondency.

“He never said ‘Why me?’” recalls Heather fondly. “He had incredible mental strength. He just said to me, ‘It’s not quite what was supposed to happen’.

"He was very pragmatic and never lost his dry sense of humour. That was his way of rationalising what he had been told. That surprised the consultant. I think over time we always felt sorry for the consultant and the nurse. They can’t cure you or do much to help. That’s a tough diagnosis to deliver.”

Heather clearly remembers that evening in 2009. Together they read through the leaflet Steve had received about MND, detailing the rapid and progressive nature of the condition.

Throughout, Heather was determined to remain strong for him and careful not to betray shock or distress.

“I said, ‘You don’t do things by halves’,” says the access specialist at the National Trust.

“I was trying not to worry him even more by overreacting. It was bad enough for him; I didn’t want him to feel worse. We had a brief conversation and decided we should try and do something normal which was make some tea and have some food. It’s probably bizarre to a lot of people that we weren’t hysterical. We were upset but we needed that sense of normality back. But we knew things were going to get very different at a speed we just couldn’t have anticipated.”

Steve, a project manager at the National Trust, first began struggling to wiggle the middle finger in his right hand. Soon Heather spotted muscles twitching around his neck and he swiftly booked a doctor’s appointment to get to the bottom of such puzzling symptoms. His GP immediately referred him to the Great Western Hospital where in August 2009 he received the diagnosis.

MND is a fatal, rapidly progressing disease which attacks the nerves that control movement so muscles no longer work. It leaves people locked in a failing body, unable to move, talk and eventually breathe. MND kills a third of patients within a year and more than half within two years of diagnosis.

As there is no diagnostic test for MND, it is a case of ruling out other conditions; so, for some people, a confirmed diagnosis might take months or even years. One of the ‘lucky ones’ Steve got an early diagnosis.

“The neurologist said they had seen people still living with MND after 10 years and that motor neurone disease is very unpredictable. But he told us Steve had the most common ALS variant of MND so we looked it up online and it said we had between two and five years. We thought we had better get as much done as we can in two years and we did.”

From the off, the couple concentrated their efforts on finding solutions: adapting their home, always staying one step ahead of the degenerative condition, anticipating Steve’s needs, weaknesses and limitations as MND gradually gnawed away at his strength and muscle control.

“He was a project manager so his approach was to find a way forward and deliver the solutions,” says the 42-year-old from North Swindon.

“This time there was no solution. But we couldn’t stop it so we either railed against it or we decided to do as much as we could to minimise the impact.

"He wanted to keep living and doing what he did and we adapted our thoughts around that. We travelled. We went to Vienna, Barcelona, New Zealand, even with his wheelchair. It was not the mad hill climbing holiday he had wanted but we did as much as he could manage.

“He also worked throughout. He had so much support from his friends and I think that really helped him. They didn’t treat him any differently and that side of his life never changed.”

Spurred on by Steve’s unflagging positivity, even as everyday tasks became harder and he was forced to rely on a wheelchair, Heather never once allowed herself to be overcome with the unfairness of it all and their curtailed life together. But being hurled into a new role as carer - whilst still working full-time - juggling medical appointments, dealing with the ever-increasing list of home alterations and adjustments and planning for every eventuality became increasingly difficult.

“I was tired beyond anything I had ever been before,” she says. “But I just got on with it because he did. I wanted him to have as much control over his life as he possibly could.

“Sometimes I think, ‘How on earth did we do all these things?’ It was because of him. Because despite everything he made you laugh and got on with it. He still makes me laugh now. When he couldn’t drive anymore he said, ‘I’ll have to put up with your bad driving now.’ He was not going to sob in a corner about it. Instead he was going to make fun of my driving. It was a horrific situation and it’s a horrendous disease but we carried on together.”

Steve passed away in March 2012, less than three years after his diagnosis. He was 51 years old.

“He had two years and seven months, which is more than many people have with MND. But there was a big hole in my life where he used to be.”

A few months after Steve’s death, Heather decided to channel her grief and joined the North Wiltshire group of the Motor Neurone Disease Association as a volunteer campaigns contact to raise awareness of the impact of MND on the people who live with it, their devoted carers and educate medical professionals about the rare condition. She is now vice chairman of the group.

She took her commitment to finding a cure and promoting greater understanding of the condition to the next level this month when she appeared as one of the faces of MND Association’s Shortened Stories campaign, as part of MND Awareness Month. Steve and Heather’s story, in comic strip form, can now be seen featured on posters across National Rail network, on London Underground escalators and buses throughout England, Wales and Northern Ireland.

“I miss him every day and I think about him all the time. There’s sadness and anger that he’s not here anymore but in a way he still is. MND never took away his personality or his sense of self. It’s because of this, because of how he was, how he lived his life that I can do all these things and approach life without him the way that I do.”

What is MND?

· MND is a fatal, rapidly progressing disease that affects the brain and spinal cord.

· It attacks the nerves that control movement so muscles no longer work. MND does not usually affect the senses (sight, sound and feeling)

· It can leave people locked in a failing body, unable to move, talk and eventually breathe.

· Some people may experience changes in thinking and behaviour, with a proportion experiencing a rare form of dementia.

· It kills a third of people within a year and more than half within two years of diagnosis.

· Six people per day are diagnosed with MND in the UK.

· It affects up to 5,000 adults in the UK at any one time.

· It kills six people per day in the UK, just under 2,200 per year

· There is no cure.

For more information about MND go to