"Four years ago, I was enjoying a very active retirement. I had always been an outdoor person. I played sport in my early years, was involved in youth and community groups, did hill walking and played music - both guitar and piano. I loved travel and exploring different cultures. Indeed travel was to become a big feature of my life and the family’s life, particularly with my work in the Department of Foreign Affairs and before that in Trocaire. I visited many parts of the world, especially Africa which I came to love. I was privileged to live in five different countries, four of them in Africa, the other being India. It wasn’t always easy but I think living in challenging environments can make us more resilient. And that helps in later life. More importantly, I have been blessed with many happy memories of my time overseas, especially the extraordinary people I met during my career who were and are trying to make the world a better place.
I retired in 2014 but continued to work part-time as a consultant for a number of years. In addition to playing music in my local church, I joined a choral society, a hobby I would recommend to anyone who likes music. I learnt to become a better cook. I became a board member with a number of charities. My wife Margaret and I continued to travel and we walked a lot. A highlight was the Portuguese route of the Camino de Santiago, one of the nicest experiences of my life.
In 2022, I began to notice a problem when playing the piano. Some of the fingers in my left hand were losing power. I had a number of MRI scans which revealed nothing unusual. I attended a physiotherapist but the fingers continued to weaken and my left arm also became affected. Eventually, I went for nerve conduction studies at Beaumont hospital and Professor Orla Hardiman subsequently confirmed I had Motor Neuron Disease.
It was an emotional time for Margaret and I and the family. Motor Neuron Disease wasn’t on my radar but Margaret had been worried as she had also worked in neurology during her nursing career. I had always considered myself healthy. I kept very fit. I ate wholesome food and apart from picking up occasional tropical bugs overseas I was rarely sick.
My experience of living with MND is just that - my own experience. The disease affects people in different ways. It can impact different parts of the body. For some, it might be upper body, for others lower body or for others it can be both. The progression can be slow for some while for others it is more rapid. The reason I say this is because I think we need to be careful about how we talk about or label MND, especially in using emotive language about its impact or putting a time on one’s life expectancy. For some people, that can be frightening. We are all different and how we react to it can be different.
"As MND progresses, you have to let go of things that you can no longer do."
As MND progresses, you have to let go of things that you can no longer do. In my case, I have had, over time, to give up driving, playing my piano, cooking, writing in longhand, and taking long walks. I am unable to carry out many of the normal activities of everyday life such as dressing myself, preparing meals, making a cup of tea and more recently shaving. With my particular form of MND, I have no choice. For this reason I’m not a fan of the idea that you ‘fight’ a serious illness like this - that makes me uncomfortable because it implies that you devote all your precious energy into trying to be cured of a disease that is not yet curable. It is a perfectly natural response, especially when you first get a diagnosis, but I don’t think it’s good for you in the longer term.
I think there has to be a period of adaptation and over time, an acceptance, a letting go and, dare I say, a surrender to something over which you have limited control. And like it or not I have become more dependent on others for the daily things that we can all take for granted. If that all sounds terribly defeatist it is not meant to be. It is of course possible and appropriate to slow the progression and to maintain a quality of life. And for some, life expectancy prospects can remain good. At this stage in my experience, I don’t think of timelines or plan too far ahead, apart from ensuring that my financial, legal and other affairs are in order. It is more important for me now to focus on the present. I want my life to remain as purposeful as possible, contributing as best as I can within my limitations.
So now for the positive part. My gratitude list is quite long. In spite of my limitations, I can still manage to walk, read, sing, laugh, travel, socialise and take an active role in my board meetings. I can still type (with one finger!). But here is the important thing - it is not just about me. A serious illness impacts on family and friends, yet at the same time it brings out the best in us. Margaret has been my rock and because of her love and constant support my quality of life is good. She really is a special person, as those who know her will testify. We have three lovely, caring children, a beautiful grandchild and another one on the way. My brothers and sisters and my in-laws have been a great support. And we have valued friends.
We often hear complaints about our health service. No institution or health care system is perfect. My experience has been positive. Professor Hardiman is the leading expert on MND in Ireland and internationally respected. The multidisciplinary approach at the Beaumont MND clinic gives me access to a range of supports from health professionals, all of whom have been helped to make life easier. My local health centre has been equally supportive. The Irish Motor Neurone Disease Association has, along with Beaumont and the health centre, visited my home on a number of occasions. All have provided really practical advice and tangible assistance. I know this is more than a job for them - they really do care and I am very grateful for this.
So what else can I say that I have found helpful, bearing in mind again that this is based on my experience? I think attitude is important. That may sound simplistic. After all, I am 72 years old, my family is reared and I have great support. Others are not so fortunate. I believe however that we can maintain or cultivate a positive attitude when we are ill. Does that mean I can always be content and not experience moments of sadness or loss? Of course not. I am human and like everyone else I have to expect some suffering in life. But in my encounters down the years with people coping with major life challenges far worse than mine, I am inspired by their resilience and their positive attitude. They are everywhere and their positivity creates a ripple effect which benefits us all.
This brings me to an area in my life that has been very important for my own personal growth. Almost thirty years ago, I started to practise meditation. I read many books on the topic, tried different techniques and eventually settled on an approach that suits me. Now, I prefer to call it contemplation. I believe we are all spiritual beings and that meditation or contemplation can bring us to a quiet place where our soul resides. To me this is a form of prayer. But no matter what we believe in, meditation is very good for you. When I let go, my body relaxes, the clutter, the distractions and the random thoughts in my mind begin to fall away. In that space there is no MND. I find this really helpful.
I go for acupuncture regularly. My acupuncturist is also a physiotherapist so I get a double benefit from my visits. She has years of experience in neurology and firsthand experience of MND. Acupuncture does not make any claims about curing MND but importantly it strengthens the immune system and, along with physiotherapy, can help maintain quality of life.
I make sure to get out every day, preferably surrounded by nature and I walk as much as I can. My challenge as a stubborn man is not to overextend myself, not just in walking but in other activities also and my body lets me know that!
Finally, I want to mention social connection. Even though I consider myself a private person It is very important to me. I lived alone a number of times in my life and am quite content in my own company. Indeed I value private space in my life. But no person is an island. We are all interdependent and need each other. That means receiving as well as giving. I love good company, especially those who can be themselves, irrespective of who they are or their social standing. Everyone has a story to tell as I find out regularly when I meet strangers on the bus! And for those of us living with a disability, just treat us as normal. Even if you feel awkward, let us not be secretive because that creates barriers. We have to embrace reality. I think that is healthier for us all."
"I make sure to get out every day, preferably surrounded by nature and I walk as much as I can."
