Coping

I started having the symptoms of Parkinson's disease at the age of 32, when my daughter Caoimhe was just a year old

I started having the symptoms of Parkinson's disease at the age of 32, when my daughter Caoimhe was just a year old. I was working evenings as a production supervisor in an electronics company.

I was the only supervisor at night and there were clusters of people working in various places so I was doing a lot of walking. I noticed that I seemed to be dragging my right foot a little bit; it seemed to happen when I was tired, late at night around 1 a.m. I used to leave a hand-written report for the morning supervisor before going home at 2 a.m. and I noticed that my handwriting would start out perfectly and, by the end, my writing would be very small. This is a key symptom of Parkinson's although I didn't know it then. I had no idea what was wrong. I had a lot of tests and was referred to a consultant neurologist who told me that it was either a brain tumour or Parkinson's. He sent me for an MRI scan in Dublin. I was to return to him three weeks later. The hospital gave me the scan to bring back to the consultant and I had to hold on to it at home for three weeks. I couldn't read the scan myself, so I had an unbearable wait. I was stupid. I thought this must be the way things are done. When I finally saw the consultant three weeks later, he told me bluntly "there's no tumour so it's Parkinson's disease".

I went to work immediately straight from the consulting room, with no counselling; a few hours later, I broke down at work and cried for hours.

The next thing I did was to try to find out more about the disease but without a lot of success. No one knows what causes Parkinson's disease and there is no cure. I eventually got in contact with Sid Rellis, who was interested in starting up an association for the midwest region, and last Christmas we had the first meeting of the Limerick branch.

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I would really love to meet someone who was diagnosed with Parkinson's at a young age, like myself, and is 10-15 years down the road; most sufferers are diagnosed in their 60s and 70s, even later. I'm concerned that I'm so young, because the medication has only five to 10 years' life and what then? Down the road, there is the possibility of dementia. I don't know if I could cope with that, but I don't intend getting that far. I intend to be cured. I don't know how I'm going to do it, but I will be cured. I'm searching for answers all the time. I'm after getting materials from the Parkinson's Disease Foundation in New York and I'm hoping they may know someone who was diagnosed at my age.

The medication keeps me going and without it I would be completely paralysed. I have a good two hours in the morning after I've taken them when I feel perfect and might even be able to walk half a mile. Two hours later, I could be completely stiff. I lose a couple of hours when I can't move about. The kids are great and my husband, Frank, does everything around the house as well as working full-time outside the home. The kids play around me, and my neighbours and family are great; people come and go all day long.

I don't get down about my illness at all. I think that half the battle is to keep going. Caoimhe says, "keep a happy face mum" and that's what I try to do. At any stage you can sit down and die.

The main problem with the disease has been the loss of freedom because I cannot get around and we live four miles from the school and the shops. But I recently passed my driving test with the Wheelchair Association (I got 100 per cent in the IQ test, so I know my brain's still perfect) and in two weeks' time I'll be driving an adapted car so that I can take the children to and from school and go to the shops.

Before this happened, I used to think I could never cope with something like this. Now that it has happened, I never get down about it and I get annoyed with people for getting upset about trivial things like money, because that's not what life is about. Faced with an illness like this, you experience life more intensely. I try to do more with my children than before. I'm more conscious of how precious childhood is. I used to be afraid that I would not live to see them having their First Communion. I've never had a fear of dying; for me it would be the fear of not being there for the children.

In conversation with KATHRYN HOLMQUIST

Parkinson's Association of Ireland: freephone 1800-359-359; Limerick branch of Parkinson's Association: tel (061) 228 316.