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Austin’s Story

Austin, 78, was something of a local hero in his native Belfast, having played rugby for Ulster and been a member of the Irish rugby squad.

He has been living with PSP for over ten years and lives with his wife Betty in County Down, Northern Ireland. Here, Austin tells us his story.

I noticed something wasn’t quite right in 2005 when I was easily tired, slower and experienced reduced co-ordination with loss of facial expression. It was initially suggested this might be a post-polio syndrome, as I’d had polio in 1955. However, the symptoms progressed, with difficulty in co-coordinating swimming strokes, stumbling, loss of balance (including on my BMW motorbike!) and difficulty playing the piano.

Two years later I had a series of scans and Parkinson’s was mentioned. Our neurologist in the Ulster Hospital recognised something other than Parkinson’s and recommended we see Dr Tim Lynch. He suggested the possibility of PSP.

Symptoms progressed very quickly with many falls, vague looks and thinking, dizzy spells and bladder control problems. I was using a wheelchair more often. Six years ago I saw Dr Niall Quinn in London who knew immediately that I had PSP for sure. I was not allowed to drive – which I found very difficult.

Five years ago my eyes were closing and I could not read or watch TV; I had many falls. I had Botox injections in my eyes and at first, these improved my ability to keep my eyes open but as time went on, this reduced. The consultant recommended surgery; this helped a lot and I hope to have a second eye operated on soon.

I was born into a family of great sportsmen – my father and uncles played rugby for Ireland and my brother and cousins all played at province and international level. I was interested in playing all sports: athletics, cricket and swimming in junior school with tennis and rugby added in secondary school.

I played rugby throughout my school years. I captained the team that won the Medallion Shield and played in the final of the Ulster Schools Cup. I played on the Ulster schools team at later, at Queens University Belfast, for the 1st XV Rugby team and was awarded my Blue’s Colours in Rugby and Judo. My proudest moments came playing Wing for Ulster Provincial team and as a member of the Irish Squad.

I retired from playing when we moved house, although continued to attend matches and my grandson now plays for the 1st XV at my old club. As I can no longer attend sporting events I watch all the rugby matches on TV, as well as athletics, snooker, bowls, tennis etc., although this can be difficult due to my eyes closing.

I don’t feel I could cope with modern rugby today, especially at a professional level where more training is required and the game is more physical. Head injuries seem to be more of a serious issue. I would be concerned about future neurological health and I am anxious about possible injuries to my grandsons who play.

I have always been interested in water sports – swimming, bouldering, canoeing and sailing. I took part in sailing championship races in Holywood and the Irish Laser Championship on a number of occasions. After retiring I crewed on the Ocean Youth Team sailing around the Azores and the Canaries – a challenging and most enjoyable experience.

My other great interest was music. I played the piano up to Grade 8 level and studied piano jazz at the Belfast School of Music. When my co-ordination deteriorated I could no longer play the piano and have recently sold my baby grand piano. I now enjoy listening to music, especially classical and jazz.

I have lost a lot of previous pleasures in life but I have a strong Christian faith and my friends commend my contentment and patience in accepting the limitations caused by PSP.

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