Patrick Hurley is 68 and lives in Skerries, Co Dublin with his wife Justine, they have four children. This is his story:
"I was born in 1952 and grew up in North County Dublin. I have lived in the beautiful town of Skerries for the past 30 years. I have been married to Justine for 42 years and we have four children, three boys and one girl, ranging in age from 29 to 39, all living in Dublin. I have always had a great interest in sport, music, travel and DIY. I played Gaelic football at a high level, then squash, golf, and hill walking. In 2006, I walked the Dublin City Marathon in less than 6 hours. In 2016, I climbed Ben Nevis in Scotland with two of my sons and we climbed Mount Snowden in Wales in 2018. I have been in choirs for many years. Our travels have taken us to the US, Canada, Hawaii, South Africa, Vietnam, Cambodia, Cuba, Sweden and many other European countries. I have always been very fit and I was taking no medication until 2020.
On a number of occasions in 2018/19, friends and family remarked that I was losing condition on my shoulders and they advised me to do some weight training (which I ignored). Late in 2019 I began to experience pain in my joints, particularly to my right shoulder and ankle. I attended a rheumatologist and she ordered a series of tests including bloods, x-rays, and MRI scans. While having these tests, in mid-January 2020, I became aware of a loss of power in my right hand and arm. Further tests failed to identify the cause and I was eventually referred to Prof Hardiman in Beaumont Hospital. In late March she diagnosed Motor Neurone Disease. This diagnosis was devastating, not only to me, but to Justine, our children and the wider family. It took some months to come to terms with the news and gradually there came acceptance.
Since then I have continued to live a totally normal life and I have experienced very little deterioration in my condition. I have noticed a slight build-up of saliva in my mouth and my balance is no longer perfect and, at times, my voice becomes weak. Muscle waste is continuing to my right arm and leg. My wife, family and friends have been very supportive without dwelling on the subject. Clearly, I frequently think of the future and what it holds but I quickly move on with the attitude to “not cross bridges until I come to them”.
I still walk about 10 km every day and I only wish that Covid was in the past and I would be able to resume travel at home and abroad. I only retired two years ago and I am still looking forward to, and planning for, several years of enjoyment and positive living. I am taking Rilutex medication for the MND and I am also on medication for osteoarthritis. I’m participating in a MND drug trial called TUDCA-ALS since December and this will continue for 18 months. The researchers hope that this drug will delay the progression of the disease.
Life is for living and that’s what I am doing".