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Lifestyle

They're fighting for a real miracle...

Inspiration: Andy McGovern, who's
suffered from MND for 35 years, on
his home computer

Inspiration: Andy McGovern, who's suffered from MND for 35 years, on his home computer

By Gemma O’Doherty

Saturday January 28 2012

On Monday night, more than half a million people tuned in to Colm Murray's extraordinary documentary about motor neurone disease (MND).

RTÉ's most popular racing commentator, who brought the thrills of the turf and the triumphs of great Irish horses into our living rooms for three decades, gave a brave but agonising insight into life with one of medicine's cruellest conditions, admitting that his chances of surviving it were at this stage slim.

What started out as a curious limp has left him trapped in a broken body facing the bleakest of futures. It was, as he called it, the pits -- progressive, incurable and terminal.

Since the programme aired, the 58-year-old Westmeath father of two, who was diagnosed in March 2010, has been flooded with messages of goodwillfrom around the country and the world

What touched so many viewers was Colm's determination to raise awareness of this little-known but terrifying illness which kills half of sufferers within 14 months of diagnosis.

Far from playing the passive victim, he shone a light on the groundbreaking research quietly going on in Irish hospitals and universities, some of it on the cusp of unlocking the mysteries of not only MND but other diseases of the brain like Alzheimer's and Parkinson's that have baffled medical science until now.

The new discoveries may have come too late for Colm Murray, but his gripping story unveiled a profound message of hope that his is the last generation who will face nothing but darkness following this devastating diagnosis.

The most uplifting insight of all came from the country's leading neurologist, Professor Orla Hardiman of Trinity College and Beaumont Hospital, when she vowed that there would be a cure for MND in her professional lifetime.

With many scientists marking 2012 as the year they crack cancer, her breathtaking optimism conjured up a world where medicine finally gets to grips with the most complex object in the universe: the human brain -- and starts to understand why perfectly healthy ones suddenly start to wither.

"I wish Colm wasn't getting worse," she says. "I would give my right arm for that. But I've got another 15 years left in my career and I really believe we are nearly there.

"I've been a neurologist for nearly 30 years. If I look at the literature that started out in the '70s and '80s and compare it to what's going on today, we've made quantum leaps in our understanding of brain disease. Back then, very few people went into neurology -- now we can't keep them out there is so much interest and demand.

"In MND, we already have one drug that can extend life expectancy but there are new ones on the way.

"We've also had a major rethink on clinical trials in the last two or three years and today they are much better organised and much more scientific in the way they are designed.

"We're on a completely different trajectory now and the new trials that are coming on stream are much more promising than anything we have seen in the last 10 years."

Only last week, the industrious consultant, who edits the World Federation of Neurology's research journal on MND, found herself mesmerised at news of a new development coming down the tracks.

"We had a visiting guest in Trinity from one of the big companies dedicated to neuroscience, and he was telling me about their pipeline. I can't give any more away, but I can say it is going to be truly awesome.

"This is no longer a field where we diagnose and say 'adios, there's nothing we can do for you'."

Also known as amytrophic lateral sclerosis or ALS, MND is described by scientists as the worst disease you can design. Ask doctors the illness they fear most and they are likely to name it.

It begins its treacherous journey attacking motor neurons, the nerve cells that control movement in the body, ripping away the ability to walk, talk, eat and breathe, yet leaving the intellect and senses perfectly intact. All the while, the patient remains mentally aware, adding to the dreadful indignity of an illness which rarely lends its victims mercy.

In Ireland, 80 people are diagnosed with the condition every year. Almost all will be dead between a year and five years later. Twice as many men develop it as women and the average age for diagnosis is 59.

While some in the medical profession might not share Professor Hardiman's conviction that a cure for the disease is around the corner, a number of thrilling developments have occurred in the last year which bolster her belief.

Just last week, British drug manufacturer Phytopharm saw its share price soar after it released what were described as hugely positive pre-clinical results for Cogane, a drug which originates from a traditional Chinese herbal remedy and may provide a treatment for severe forms of MND.

Lab animals given the drug showed a 30-50pc improvement in muscle strength compared with a group treated with placebo and Riluzole, currently the only drug available for MND which can prolong the life of patients by about four months.

This drug has also demonstrated encouraging results in other neuro-degenerative diseases like Parkinson's.

Another beacon of hope in the marathon to beat brain disease is a promising new product called Dexpramipexole, which was given 'fast track' status by America's FDA (Food and Drug Administration) in 2009 on the grounds that it appears to provide significant protection for neurons under pressure.

About 30 Irish patients, including Colm Murray, are now participating in the first European clinical trials for the drug, which is believed to work by increasing the efficiency of mitochondria, the component in the human cell that creates energy. The results will be known in just over a year's time.

The secret to creating a world free of neurodegenerative disease lies in uncovering the mechanisms that cause it. Towards the end of last year, medical science took a massive leap forward with the discovery of new genetic pathways that are responsible for cell death and insights into genetic abnormalities that translate into MND.

Although only 10pc of cases have a family connection, in a matter of months, a new blood test for inherited MND will be available to those who fear they may develop it and allow them to prepare accordingly.

Revolutionary developments in MRI technology are also making it possible for doctors to see inside living brains for the first time, giving them a greater understanding of the 100 billion nerve cells inside each one and the bewildering million billion connections that wire them together.

A team of American universities is beginning to map the wiring, or 'connectome', of the human brain, a process which will help scientists understand the complex networks of the organ and may in turn shed new light on brain disorders. In the summer, the first 1,200 volunteers will have their brains scanned in the new machines. Data from the findings will be released in the autumn.

For the lay person, it can be hard to absorb these state-of-the-art developments which will transform the next generation of healthcare. Professor Hardiman believes cancer is the best analogy.

"I'm in my early 50s now, but when I was a young doctor, if you got breast cancer, you got treatment that made your hair fall out.

"Back then, you might or might not survive the cancer but you also might not survive the treatment.

"Today, about 85pc of people who get breast cancer recover. What we have now is a whole range of drugs that slow down the division of cancer cells. In cancer, we want to kill the cells. In the neurodegenerative diseases, we want to stop cells dying.

"It's the flip side, but the same process applies. The drugs we are developing are much more targeted, which is exactly what happened in cancer 20 years ago.

"The first objective is to make MND a chronic disease like diabetes or high blood pressure. The second is to stop it progressing and the third is to reverse it.

"I'm not so completely blue-eyed optimistic about the third objective but I'm pretty sure we'll be able to stop it in its tracks or slow it down and most of the people I look after would be happy with that.

"People also need to realise that what we're doing in Ireland is really cutting edge. We are leaders in this field, boxing way above our weight internationally in terms of research.

"Patients who come to our clinic sometimes ask if they would get better treatment in England or America. What they get here is exactly the same, if not better, than what you get in the rest of the world."

- Gemma O’Doherty

Originally published in

 
 

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