'I think of living all the time, not dying'

MY HEALTH EXPERIENCE:Learning to live with a diagnosis of motor neurone disease

ALL MY LIFE I have put my faith in my doctors. I go to my doctor for my six monthly check-up especially since I turned 60, seven years ago, and I have never had a serious illness before. I keep fit by walking and occasionally swimming, I eat well and I only drink socially.

But in November I knew there was something amiss with my right arm. I couldn’t lift it up.

I remember early in December, when I was trying to put up some Christmas decorations, and I went to put a screw in the wall and I couldn’t do it. I had no power.

I went to my doctor, Dr FX Flanagan in Clane, Co Kildare, and he said to me that it could be muscular problems.

He made an appointment for me in the Hermitage Clinic in Lucan, Dublin. I went in there on January 4th and I had some tests done and nothing showed up.

I knew there was still something wrong when I couldn’t lift up my arm in the morning and I couldn’t do the normal things such as shave myself. I had to do everything with my left hand.

Dr Flanagan referred me to Prof Niall Tubridy at St James’s Hospital. The appointment was for March, but I got a cancellation and was seen in early February.

I saw him in his private clinic. He didn’t say anything about what it might be. He just referred me to the Blackrock Clinic for some tests to be taken the following week.

The doctors at Blackrock Clinic checked my hands, arm, legs and feet. That evening, my wife Maureen received a call from Prof Tubridy’s secretary to say that he wanted to see me in St James’s at 4.30pm on the following day.

I didn’t suspect anything serious. I had no suspicion of what might be in store.

I went back that evening at the appointed time. He told me that my bloods were good and that I didn’t have cancer, but I did have motor neurone disease.

I certainly knew something serious was wrong, but I never suspected motor neurone disease because I didn’t even really know what it was.

He explained to me that it was a progressive disease and there is no known cure. He said some people live for only months and others live for years and he couldn’t give me any indication of how long my life span would be.

He said he knew of a woman who had been given only months to live and was still back to see him five years later and another man who lived for more than 25 years with it.

Approximately 80 people are diagnosed with motor neurone disease every year and there are roughly 250 people suffering with it at any one time, so going on those figures, life spans are not very long. The average life span after diagnosis is five years.

When I heard the news I was a little bit relieved just to know what I had. I was hoping that some treatment would become available, but he explained to me that there was no known cure.

He has me on a tablet twice a day that is supposed to slow down the progression of the disease, but Prof Tubridy is not in a position to tell me how much it would slow it down.

He then referred me to Prof Orla Hardiman, who is a specialist in motor neurone disease in Beaumont Hospital, and I have had two visits to her since, the last one in June.

She has been advising me to take some gym exercises, but she has not changed the prescription. I have a further appointment with her in September. I have not been back to Prof Tubridy since. I feel 100 per cent. I feel extremely well for somebody who has a terminal illness.

I come into the Dáil as required when it is sitting. I do my clinics on a Monday and a Friday.

I go to the usual events and functions that I have been doing all the time. While I might have slowed down a little on the night work, I have not slowed down anything on the day work.

I could be on a sick certificate from the Dáil, but I wouldn’t even consider doing something like that.

I have a job to do here that I was elected to do and I intend to keep doing it as long as possible.

I was 64 when I was elected for the first time to Dáil Éireann in 2007 and I would say I am probably the oldest ever first-time TD. I will be 68 at my next birthday.

It took me a long time to get into the Dáil and I’m going to stay here as long as I can. If I feel as well as I do today, I will stand at the next election.

My writing is poor, I have to use my left hand. I don’t feel handicapped other than that my right hand has weakened considerably, but I can type and answer the phone.

I have spoken to the Taoiseach about it and he has been very supportive as have all the members of the Oireachtas.

I had a long chat with Enda Kenny at Dermot Earley’s funeral. I find that kind of thing helpful when people wanted to talk about it.

I know this condition is incurable and terminal, but I think of living all the time, not dying. My focus is on living.

We are all going to come to our end at some time. I know a lot of people in just the last six months who have died of various different things . . . on the roads, and so on.

I’m not scared of death per se. I’m a practising Catholic. I attend Mass at least once a week, I pray and I have faith. My faith is what is keeping me going as well as everything else.

I had many experiences in my life. I started off as a clothes dyer in a factory in Cootehill, Co Cavan. Then I went to work in a bar and grocery. Then I joined An Garda Síochána.

I spent nine and a half years there. Then I left that to become the manager of a tourism project in Robertstown, Co Kildare, which I did for six and a half years.

After that, I went into the insurance business working for Irish Life and set up a brokerage. Then I went working for Charlie McCreevy as a personal assistant.

After he left, I had my eye on getting his Dáil seat. I lost out at the convention and then I finally got elected in 2007. I see being in the Dáil as the pinnacle of my career.

I feel to be elected to Dáil Éireann by the people of North Kildare – and I’m only an adopted person there – I feel it is a great honour and that is why I work hard at it.

I have compared notes with Brian Lenihan on a number of occasions. We are both on a journey. We talk and chat to one another about our illnesses.

There was a time when I would plan two to three years ahead, but I don’t do that anymore, I take every day as a bonus.

In conversation with Ronan McGreevy

MOTOR NEURONE DISEASE: WHAT IS IT?

Motor Neurone Disease (MND) is a progressive neurological condition affecting the central nervous system.

It is caused by damaged nerves gradually losing their strength. Symptoms may affect just one arm or leg at first. They then gradually become worse, and spread to involve other limbs.

Eventually, many muscles in the body become affected. Muscles gradually become weaker and wasted.

Its cause is unknown and there is no cure though drugs can slow the progression of the disease and any symptoms that occur.

People who have MND have a shortened life expectancy. Only about one in 10 survives 10 years or more.

Motor Neurone Disease affects about one person in 50,000.