IN JUNE 2005 my life was pretty good. I remember driving home from hospital with my youngest born, Julie, thinking what a lucky chap I was. I had four healthy kids, a wonderful wife, a good job and a lovely home. I had the right foundations for a good life. Five months later it all changed when I was diagnosed with motor neurone disease.
It started that summer. I noticed a weakness in my right hand. Over the next five months it got worse.
I went to my doctor who sent me on to a specialist who in turn sent me on to Dr Orla Hardiman, consultant neurologist at Beaumont Hospital. I spent a week in Beaumont getting tests done. At that stage I was perfectly normal and able to do about 80 per cent of things I had previously been able to do.
Then came the news from Dr Hardiman that I had motor neurone disease. She said the average life expectancy was three to five years but if I was lucky I’d get between five and eight years. At that time I had four babies in nappies – a four-month-old daughter and a set of triplets, aged 18 months.
To be told that you will not see them grow up was tough. It was like my life had just stopped.
I was 37. Up till then I had been a perfectly healthy, outgoing, athletic person. Apart from heavy lifting, I was still able to do most of my chores on the family farm in Co Meath, which I worked on with my father part-time, in addition to my job as a recruitment consultant in Dublin with Irish Recruitment Consultants.
When you are given news like that it is irrelevant in a way how much time you have. You feel that your clock is ticking and you are no longer able to be carefree and live a normal life.
I felt it was very unfair to be told I would be lucky to see my kids get out of primary school. Angry is not the word I’d use, it is more a feeling of being hard done by. All my grandparents lived well into their 70s, 80s and even 90s so my family history was quite good. I would have expected to have had maybe another 40 years of life. With a set of triplets, my health was the least of my worries.
For the first month I shook off the diagnosis. I put it to one side because I was still able to do most things. Slowly my hands got worse. In the past 18 months my legs have become weaker to such an extent that I am no longer able to walk and I am no longer able to move my arms and hands apart from one finger in one hand. This means that I am able to use a mouse. Because of this and the fact that I can still talk means that I can still carry out my job.
Having motor neurone disease is like a life sentence. Every six months you have to overcome new challenges. First I had to get used to not being able to use my hands. Then I had to overcome not being able to walk. Now I have to get used to not being able to get dressed and get around the house on my own.
When mobility became a problem 15 months ago I started to work from home. I can still do my job reasonably effectively. If I was sitting down doing nothing at all that would be much worse. My family and my job are what keep me going.
My wife Sinéad is a saint. She has to look after four kids and look after me – wash me, dress me and feed me. When your three-year-old daughter has to help you eat . . . it doesn’t get more real than that.
The children are very good. As far as they are concerned I am normal. They know their father can’t run around and pick them up. If they fall over they have to pick themselves up. But we still lead a fairly normal active family life as best we can. I help with homework and story time.
The Irish Motor Neurone Disease Association is a great support. All I have to do is pick up the phone and they will help me get what I need to make life easier for everyone. I have also had home visits from the association’s MND nurse specialist. I need for nothing.
There is no cure for motor neurone disease. I keep up with the latest research but sometimes too much information can be a bad thing. I would be the first to put my hand up to become a guinea pig for a new treatment, but there is nothing new out there. There is no light at the end of the tunnel. Stem cell research will probably be the answer, but it will be 10-20 years down the road.
Everyone is talking about the recession, but as far as I am concerned, your health is your wealth. Now all the medical charities are crying out for money, whether it is cystic fibrosis or cancer.
It is difficult to live with the fact that nothing can be done for me or other people with motor neurone disease.
Even those with cancer can fight it and there is a chance you might get over it. The hardest thing is to feel you are fading away.
If you have had a health experience – good or bad – that you would like to talk about, please contact: healthsupplement@irishtimes.com
A progressive, debilitating disease that affects one in every 50,000
Motor neurone disease (MND) is the name given to a group of related muscle- wasting disorders.
The disease affects the motor neurones in the brain and spinal cord, which control muscle function.
Approximately one in 50,000 will develop MND in any one year, with 250 patients in the Republic affected by the disease at any one time.
MND presents itself in various ways, depending on the particular groups of muscle fibres which are affected first.
Wasting and weakness of muscles of the hands, stiffness in the legs with dragging of one leg or the development of marked weakness in the legs may be the initial symptom.
Sometimes the muscles of the tongue and swallowing mechanism are affected early, with slurring of speech, difficulty in swallowing and coughing.
The disease may remain relatively stationary for some time or may progress to other limbs, to the tongue and to the breathing muscles.
MND does not affect touch, taste, sight, smell or hearing. Nor does it directly affect bladder, bowel or sexual function. The intellect remains completely unchanged.
MND is generally a steadily progressive disease over time, but varies greatly from one person to another. One person dies every five days from this devastating incurable disease, according to the Irish Motor Neurone Disease Association (IMNDA).
Established in 1985, the IMNDA provides specialist equipment on loan to clients.
It also provides financial assistance towards home help so clients can maintain some independence throughout the progression of this debilitating condition.
According to the association, the MND community is the only neurological community that does not have automatic access to medical cards and are subjected to a means test for the card.
“Currently, the State’s position is to exclude the MND community from medical card access because they are expected to die.
“Furthermore, this view appears to assume that managing MND is done over a shorter period of time and, therefore, there is less expense involved in a short-term illness – this is most certainly not the case.
“The cost of specialised equipment and services are enormous – communication aids alone are priced from €2,000 to €5,000,” says a spokesperson for the association.
MND Global Awareness Day will run on June 21st. For more details, see imnda.ie or contact 1800 403403