I'm trying to work against the odds

MY HEALTH EXPERIENCE:Broadcaster to take part in trial of new drug, writes COLM MURRAY

'IN DECEMBER I spoke on The Late Late Showabout how devastated I was on March 30th last year to be told that I had motor neurone disease (MND).

I had sought medical advice because of an ongoing limp which was beginning to slow me down and worry me.

In addition, muscle twitches (which I now know to be called fasciculations) added to my concern.

That initial diagnosis was confirmed about two months later by Prof Orla Hardiman at Beaumont Hospital.

Over the past 14 months, my physical condition has certainly worsened.

The progressive loss of mobility has seen me move from the use of one stick to two sticks and then to crutches.

I try to do some walking at home with the help of a rollator , but outside the house and at work I now use a wheelchair.

I also notice a weakening in my arms and hands, which, understandably, creates other problems.

I have difficulty lifting things – cups, knives, forks. I’m at that stage now that I would have to be very careful and even lifting a cup of tea is a challenge, as is using a mobile phone.

I’m trying to work against the odds. I have difficulties in doing everyday things. I have great difficulties in buttoning a shirt, for instance.

It is hard to come to terms with suddenly being cast into a world in which you cannot do so many of the things that you took for granted, such as a game of golf or going for a walk.

We have adapted our house to my new needs, and I am in the process of trading in my present car for a wheelchair-friendly one.

All in all, life is much more challenging, but I am very grateful that my breathing and speech are unaffected. As a result, I’m still working.

My friends and colleagues in the RTÉ sports news unit and in the newsroom have been hugely supportive, which means a lot to me.

You have to refocus, readjust and re-centre or else you might as well go out and lie under the 46A.

I have bad days, but I try to maintain a healthy interest in the world around me and especially in the next winner!

My banker for Royal Ascot is Fame And Glory at 3-1. Looking forward to things like that keeps me going.

All those things are important in life. The anticipation and the thrill of involvement are all healthy things which keeps one’s mind focused on other things.

This is the reality for me. I have to be honest about it. There is no point in me dressing it up to be something that it is not.

I was asked recently by Prof Hardiman if I would volunteer for the trial of an experimental drug called Dexpramipexole. Having come through all the various medical tests required to be eligible for participation, I’m delighted to say that this trial for me starts on this very day.

I know little enough about it from a medical point of view. My understanding of it is that it is a drug that the top medical experts hold high hopes for and Prof Hardiman fought hard for these trials to be staged here in Ireland.

In addition, patients who live in Northern Ireland and who fulfil the necessary medical criteria are also participating in this trial.

I have to hope that it will mark a major step forward in the battle against the progression of this terrible disease.

I can’t say that it is some miracle wonder drug that is going to be a cure for motor neurone, but it gives me something to hope for. At the very least, it’s a faint glimmer of light at the end of a very dark tunnel. That’s why I had no hesitation in going for it.

I’m willing to do anything I can in the battle against this terrible and cruel disease. I went on The Late Late Show last December because of the amount of media requests I had received, asking me to talk about my condition. I promised myself then that I would not go speaking publicly about it after that, but this exciting new trial is a major reason to make an exception.

Ongoing research is vital to find a cure for this disease. I am very supportive of the great work being done by the Trinity College Research Foundation and of its desire to establish a world-class and sustainable scientific research unit into this whole area of motor neurone.

Times are hard here in Ireland right now, of course, but what is needed for them at this point is a generous and visionary philanthropist, who would enable their good work to be elevated to a whole new level.

Zhanna O’Clery of Trinity College is the person charged with trying to find that elusive person or persons, and I’m doing my best to be of assistance to her in that quest.

The racing community, and the bookmakers, have been fantastic in recent times, and they’ve raised a substantial amount of money, all of which has gone to the fight against MND.

Like all other sufferers from this condition, I also greatly appreciate the work that the Irish Motor Neurone Disease Association do in raising funds by means of various initiatives throughout the State.

They offer support at many levels to motor neurone patients and their families. Ongoing research and practical back-up support like this offer hope and help to patients like myself.

It’s my fervent wish that the coming years will see giant steps forward in the battle to find a cure.

The NUI Galway Dublin Alumni Club will host Colm Murray in Conversation with Seán O’Rourke on Thursday in the press conference room of the Aviva Stadium from 7pm. This event is open to the public, however advance registration is required. To register, tel: 091 492721 or emma.goode@nuigalway.ie

In conversation with Ronan McGreevy

DRUG HOPE: CLINICAL TRIAL FIRST FOR IRELAND

RTÉ sports broadcaster Colm Murray is one of the first people with motor neurone disease (MND) in Europe to take part in a clinical trial of the drug Dexpramipexole. The drug has undergone trials in the US with some success.

Murray’s consultant neurologist, Prof Orla Hardiman from Beaumont Hospital, says that in getting the trial to Ireland, she had to overcome the perception abroad that this country is a difficult one in which to operate drugs trials.

She describes the intervention of the Irish Medicines Board as critical and the work being done in Ireland in relation to the disease as another factor in securing the trial for this country. Murray will take part in a two-year placebo-controlled trial.

Hardiman says few drugs to treat MND have generated such interest or optimism and it had the ability to turn the condition from a fatal to a chronic one that can be managed over time.

“It is not a cure, but if it does slow MND down significantly, it means we have got a handle on the means by which motor neurone disease develops and evolves,” she says.

“If this was a cancer drug, the effect that it has would be seen as a major breakthrough.”