Motor neurone disease: 'We just had to watch her fade away'

It killed Sarah Dunn's mother in only 12 months. Now a new research project will at last give other sufferers of motor neurone disease and their families what they long for most: hope

The last thing I did for my mum was scratch an itch on the top of her head. The oxygen mask she had to wear day and night by this point was irritating her scalp, but she couldn't lift a finger, never mind her arm, to reach up and relieve it.

It was just over 12 months since she had been diagnosed with motor neurone disease (MND) and her deterioration had been rapid. From a "dodgy" knee, which was originally put down to arthritis, the effects had spread from one leg to the other, up to one arm and then the next, putting an end to the life she had always known as a busy teacher and mother of three. Fortunately, she never lost her ability to talk to us and share a meal – unlike many patients, who have to be fed through a tube and communicate through a voice machine – although the breathing apparatus she needed at the end didn't make it easy.

MND is a degenerative, neurological condition that leads to the death of the neurones that send messages from our brains to our muscles. Once the neurones die, the muscles waste away, and with them the ability to move, speak, swallow and, ultimately, breathe. Doctors consider it the worst disease in medicine, not least because of their own inability to offer effective treatment.

The first I had heard of MND was when Kevin Hughes, an MP for Doncaster on the patch I covered as a local news reporter, was forced to step down because of his diagnosis. Within weeks of writing about his decision, I was collecting tributes for his obituary. It was this that came to mind when my dad, Andrew, broke the news. Life expectancy for those with MND is between two and five years.

Along with the devastating shock, anger and fear, the diagnosis also arrived with so much frustration. There is only one National Institute of Clinical Excellence-approved drug, Rilutek, that can slow symptoms, but it wasn't effective for my mum. The consultant couldn't even give us answers about how the disease would progress because every patient is different. My mum's fate was to live with her illness, not knowing what function she might lose that month, week, or day.

The impact was huge on every single aspect of her life and ours. She was already in a wheelchair when she went for the diagnosis, following a fall, and she was to be confined to that chair for the remaining months of her life. Mum went from being a teacher and head of year who enjoyed keeping fit, entertaining at the weekends and running a Sunday school at church, to a shell of her physical self who couldn't hold a book in front of her. She was still the same person – still funny and friendly; still intelligent, generous and loving. She just couldn't show it like she used to be able to – even a hug was beyond her control.

However, mum remained philosophical – swallowing back initial thoughts of "why me?" and replacing them with "well, why not me?" – and fought such a brave battle, she earned even more admiration than when she was well.

We did have happy times throughout those 12 months. In with the hurt and anger there were shining lights that stay burned on our memories. My sister Clare had got engaged the summer before Mum's symptoms started, and from that first day after the diagnosis, we used the nuptials as a way of distracting ourselves, and I know my sister is so happy that Mum could share in her special day.

Other high points were our last family holiday to Provence – the smell of lavender now always a reminder of her – and the return of my brother, Paul, from Spain, where he had been living for work. He moved back into the family home, providing invaluable support to Mum and Dad. From everyday tasks like helping with the cooking, to being someone else to talk to at the end of another emotionally draining day, he was a rock for them both.

My dad not only had to deal with the news emotionally, he had to adjust from the role of husband to carer, giving up his job of 27 years as a chemist at Bentley Motor Cars. It was an emotional rollercoaster, as he suffered the torment of watching the woman he'd met as a teenager waste away before his eyes, while he survived on a few hours sleep each night and got to grips with various contraptions intended to make life easier. He was constantly pushed beyond what he believed he could cope with, arriving at a situation one month that seemed as bad as it could get, then dealing with a further deterioration just a few weeks down the line.

My mum died in January 2008 in a hospice in Cheshire, after going in for respite care. She was 55 and I was 24. The decision to move her from home was another excruciating element to this ordeal, as dad fought feelings of guilt, versus the physical need for a break. On reflection, I think we're all relieved that the end came while she was there – the alternative was likely to have involved panic and hysteria as we inevitably wondered whether there was something more we could have done. Of course there wasn't. There never had been anything more than trying to make her more comfortable.

This helplessness and lack of hope is what makes MND so especially cruel. That's why news of Europe's first research facility for MND is so important. Building work started this summer on the Sheffield Institute for Translational Neurosciences, a place to focus energies and resources to progress treatment into the disease, along with other neurological conditions including Parkinson's disease and spinal muscular atrophy, a childhood form of MND.

Until now, investment has been severely lacking for a disease which kills around 35 people a week in the UK – with another 35 diagnosed. Compare the £33m spent on vCJD – variant Creutzfeldt-Jakob disease, the human form of mad cow disease – which killed 93 people between 1999 and 2004, with the £8m spent on MND which killed 6,000 people over the same period, and it's clear why such a facility is needed.

Brought about by a fund-raising group called the Sheffield Institute Foundation, which has to date raised £11m, and The University of Sheffield, which pledged a further £5m, the centre will be headed up by consultant neurologist and neuroscientist Professor Pam Shaw. After becoming frustrated with the limited outlook for patients as a trainee neurologist, she has dedicated her life to MND research.

"If you asked a room full of doctors which disease they would least like to develop," Shaw says, "many would put MND at the top of the list. As a young trainee my interest sprang in a way from a sense of discomfort or failure as a doctor. I used to almost dread seeing patients with MND because we know so little about the condition. This discomfort developed into a determination to use my skills to try and improve the situation."

She says a dedicated research institute has always been where she envisaged progress being made. "It allows the bringing together under one roof teams of clinicians and scientists with different skills, but all focused on the same problem. I believe that the tools of science are available to solve MND, but we need to harness the resources needed to properly employ them."

The step towards making the dream a reality came during a conversation with a patient four years ago, when she was asked what she would do to fight MND if she had £20m. "I described my vision of the Institute and she decided at that moment to help me achieve it," she said. "We decided to name it The Sheffield Institute of Translational Neuroscience (SITraN), meaning scientific developments emerging from experimental work in the laboratory will be translated into effective forms of treatment."

Building on research already being carried out at the University of Sheffield, the centre will double the amount of laboratory space, and increase the staff from 80 to 150 within three years. Working with universities here and in America, pharmaceutical companies and charities, Professor Shaw believes that more effective therapies could be available in five years, with a cure its ultimate aim. "I am of course cautious about raising hopes and of predicting the timescale that will be required for the development of a curative therapy," she says, "but that is what we will be aiming towards in SITraN. The pace of research for people facing MND and their families is painfully and frustratingly slow. I imagine that the creation of SITraN will bring a feeling of hope and relief that MND is beginning to get the attention it deserves."

We as a family can't wish my mum was still alive today, as the disease is so cruel and debilitating that by the end it wasn't much of a life at all. But we can find comfort in this venture as a place offering the first thing we were robbed of with that crushing diagnosis: hope.



To donate to SITraN, go to Sifoundation.com

MND: The doctors' biggest enemy

* Motor neurone disease is a neurological condition for which there is no effective treatment and no cure.



* Every week in the UK, 35 people are diagnosed with MND and a further 35 people will die of the disease.

* The average sufferer will live for two years after diagnosis. Only 10 per cent of sufferers live for more than five years.



* The muscles waste away and patients eventually die from weakness and paralysis of their breathing muscles.

* In Britain between 1999 and 2004, 6,000 people died from MND, 4,200 from HIV/Aids and 92 from vCJD.



* During this time £33m was spent looking into vCJD, £45m on HIV/Aids and £8m on MND.

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