Living with Parkinson’s and still having a ball

Billy Rice only realised he had Parkinson’s disease when his golf game ‘went to hell’ and marked an end to taking good health for granted

Billy RIce only figured out he had Parkinson’s disease when his golf game “went to hell”; now, six years on, he had as healthy a lifestyle as he can and he still plays golf. This is his story as told to Fiona Tyrell.

WHEN I first found out that I had Parkinson’s disease I tried to keep it quiet. I didn’t want it to come out. I was a very active golfer, captain of the golf club here in Limerick and I was gearing up for retirement. A lot of things happened together.

My golf game had gone to hell and I was suffering from frozen shoulder. I went to physiotherapists and chiropractors for a number of years. Eventually, I went to see my GP and complained about how bad my game of golf had become. The diagnosis came quite soon after that. I was diagnosed at the age of 62. That was back in 2003.

It put an end to the plans I had for my retirement. It was also an end to taking good health for granted. In another way it was a bit of a relief to be able to say what was wrong with me.

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It was a relief, dare I say it, that it wasn’t something more serious. I have a friend who has motor neuron disease and a relative with MS. One has died and the other is still going. They are real blockbuster diseases compared to Parkinson’s.

Both my arms have tremors now. I have poor posture and the real giveaway is how slow I walk. I can’t walk very far and I drag one leg. I am still playing golf once a week. I can keep up with the lads, but my golf is very bad. They are very kind.

I play bridge twice a week. My bridge partners are also very accommodating – a tremor comes into my hands when I sort the cards.

We have a good routine. My wife Jennifer is a social worker and works three days a week. I try to produce a meal on those days – usually some variation on mincemeat. I also bake scones.

I can still cut the grass and love playing with my grand-daughter Grace, the love of my life. She is two years old and is a real motivation for me to keep going, to keep active and be funny.

I am not on any medication. I am trying to defer going on medication for as long as possible. The side effects of the medication, as far as I have heard, are not the best – nightmares, hallucinations, high and low periods. And the benefits of the drugs only last for a certain period of time. I am, however, on a course of enzymes and taking MAO-B inhibitors, in a bid to slow down the progression of the disease.

As long as things are manageable, I don’t mind. Jennifer and I did a lot of research when I was first diagnosed and we have become quite knowledgeable about Parkinson’s. That was our way of dealing with it.

Now I realise, my attempt to keep my disease quiet, not to come out, was a big mistake. When people did find out some were angry with me for not telling them. Others had suspected all along.

I am events and fundraiser organiser for the midwest Parkinson’s support group. I attend aqua therapy classes and massage therapy session with the support group. Once a month we have an education meeting, which is given by Mags Richardson, our local Parkinson’s nurse specialist.

Lots of Parkinson’s sufferers have trouble with their voice. It is a major problem. If you can’t speak properly, people treat you like an idiot. It leads to very low self-esteem. I have been attending voice training classes with other Parkinson’s patients.

We do lots of exercises, breathing, make funny noises, facial expressions and singing. Most of the time is spent giggling and laughing. I try to lead a very healthy life now. Plenty of fruit and veg on top of my mincemeat. I eat porridge every morning. My glass of wine every night is essential, but aside from that I don’t drink any more. I don’t go up to the golf links bar anymore. I don’t get down. It’s in my nature to think positively. Parkinson’s has taught me to live in the moment and not spend my time planning the future. I have found a new lease of life in my involvement with the support group.

High profile people like Michael J Fox and Mohammad Ali help raise awareness about Parkinson’s. Still, “oh you poor man” is the typical reaction you get when people learn you have Parkinson’s. Of course, sympathy is the last thing you want.

It is important that people realise that you are not your disease. People are very kind, but some have a tendency to label you.

If you have had a health experience – good or bad – that you would like to talk about, please contact: healthsupplement@irishtimes.com

Parkinson’s: one of the most common neurological disorders

Parkinson’s disease is one of the most common neurological disorders affecting people over the age of 55. About 7,000 people are affected by the disease in Ireland. It usually begins between the ages of 40-70 and men are affected more frequently than women.

It is a slowly progressive disorder, which is life-altering, but with good medical care patients usually live a normal life span.

The more positive you are, the better your long-term outcome is likely to be, according to the Parkinson’s Association of Ireland.

Parkinson’s is caused by the premature death of cells in a small area of the brain, which produces dopamine, a chemical used by the brain to relay signals. A loss of dopamine in the brain means the brain is not able to send the proper signals to control movement. Parkinson’s affects everyone differently. Usually the earliest symptom to appear is shakiness or trembling in the hands, arms, legs and jaw. Other symptoms include muscle rigidity, slowness of movement and problems with balance.

Most of the treatments for the disease focus on replacing or mimicking the missing dopamine. One of the most common drugs used is a drug called levodopa, which replaces the missing dopamine. There is a big debate about when a patient should start using the drug, because there is a “wearing-off” effect.

A surgical procedure called deep brain stimulation, which involves the use of a pacemaker to deliver electrical stimulation to targeted areas in the brain that control movement, is also an option for some patients with Parkinson’s. It is, as yet, unavailable in Ireland.

  • Taken from the More Than Meets The Eyebooklet published by the Parkinson’s Association of Ireland. Tel: 1800-359359, or see www.parkinsons.ie