My Health Experience: ‘I get tired of fighting’

I was 44 when I watched Muhammad Ali light the Olympic flame on television in 1996. I had always admired the great boxer and enjoyed watching him on the TV, but not this time. This time I saw the same shake in his arm that I had.

Even now I can see the room where I was sitting. The sun had moved around the other side of the house and suddenly it seemed very cold. Then the commentator said, “Of course, he has Parkinson’s disease.”

That’s all, just those few words. I had heard about Parkinson’s, but to me they were just words as I knew nothing about it at all. Even with my lack of knowledge, I could see the change in the great man. A cold feeling settled in the pit of my stomach.

My left hand had been shaking occasionally, my arm did not swing when I walked, and I tripped with my left foot, throwing it forward rather than walking confidently on it. The piano was getting difficult to play; the more I practised with my left hand, the worse it got.

Too young
I said nothing to anybody until about a month later when I confided in my younger sister and she told me I was foolish not to get it at least ruled out. So I went to my GP who said I was too young for Parkinson's.

I was referred to a general consultant who said it could not be ruled out and from there to a neurologist who diagnosed early onset Parkinson’s.

There are not enough words to describe the twists and turns my life has taken since Parkinson’s entered it 17 years ago. It seems like I have lived with it for my whole life; at every waking moment it is with me.

I knew nothing about Parkinson’s disease so my life partner, Liam, and I decided to try to find out as much as possible about it. We bought every book we could find on the subject and my brother, a consultant in Northern Ireland, sent me his medical dictionary. That was when I started fighting back.

I was started on medication when I was diagnosed and I spent nine miserable months trying to tolerate it. I spent much of my time being able to walk properly with no tremor, but green-faced with nausea. During those nine months I don’t know what I would have done without the support of Liam. At the time of my diagnosis, our daughters were 17 and 12.

I rang the Parkinson's Association of Ireland, which I had never heard of before, for advice. I was put in touch with David Magennis who ran an informal group for young people with Parkinson's called Pals.

One of the reasons that I survived those early years with my sanity intact was down to David (who was diagnosed at 29) and Pals. We became friends and I helped him and Sean Doody build Pals from an informal set of people into a group with its own identity that provides people with a great deal of support.

There are days now that I get tired of fighting, but then there is nothing else I can do. Fortunately, I am still relatively mobile and I only use a wheelchair in the airport. You just survive and take a fairly strong antidepressant to keep going.

In the early years, I was not that much affected by my condition and the medication worked well at the start. It started to bite about four or five years later when my younger daughter had almost finished secondary school and my older daughter was in college.

About seven years after my diagnosis, I realised I needed something better as the best and strongest medication was no longer working for me.

I had read about Deep Brain Stimulation (DBS), an operation involving the implantation of a pacemaker into the brain that sends electrical impulses to specific parts of the brain.

I went to Bristol for surgery in March 2003 as it is not available in Ireland and it gave me my life back.

It took quite a while – a few years – to get a setting that really suited me, and on one occasion, 40 settings were tried in one day.

The programming of the implantable device is the most problematic part of the whole thing. When the machine is switched on and programmed to good effect, you witness what is almost a miracle.

However, we are all different and the result varies from great to not as great as hoped for. In my case, they told me I was one of their best results. Most people who have had the operation regard it as a positive thing and a lot of people get good improvement.

As DBS is not available in Ireland, you have to go abroad to get it and most people go to the UK. There is new legislation coming in that will allow people to go anywhere in the European Union for this surgery and if you don’t have private insurance, the HSE will have to pay. Not everybody is suitable for the surgery though and you must have a letter from your consultant.

I am getting slightly more circumscribed as time goes by. I cannot take any more medication and my machine can't be turned up any more so I will need to discuss other options with the neurosurgeon in Bristol.

Medical options
One option might be a medication pump, which delivers gold standard medication into the body via a tube little and often and does not cause the same side effects as an increased dose of oral medication. There may be other options as well.

On a good day I walk normally but without the DBS, I cannot walk at all. If I have not had a decent sleep or am stressed, I am reduced to the point of having to hold onto something. I have recently started to downscale after 17 years.

Last month, I resigned from the board of the PAI although I will remain on the board of the European Parkinson’s Association for another year.

My daughters are both living away from home so my condition does not impact on their lives and I hope it won’t. I do not want to be one of those people who my family look at and say “What will we do about Mum?”

I would prefer to be gone off this earth. I like to be in control of my medication and treatment and to make choices for myself.

To donate to the Parkinson’s Association of Ireland, text Parkinsons to 50300. Each text message is charged at €2. 100 per cent of donation goes to the Parkinson’s Association of Ireland

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