Last year Roy Taylor was devastated when he was diagnosed with Motor Neurone Disease (MND). Having worked as a musician for decades – he was in the band Jump the Gun who represented Ireland in the Eurovision Song Contest in 1998 – the 62-year-old is still coming to terms with how his life has changed.
“Over the course of my working life, I have appeared in every kind of venue all over the country from dumps and dives to castles, mansions and stadiums,” says Roy who lives in Dundalk. “But life changed dramatically for me when, in April, 2018, I was diagnosed with MND.
“I first realised my health wasn’t good about six months before my diagnosis as I had lost a lot of weight, was lethargic, constantly tired and had no energy. Subsequently, I went and had every imaginable test carried out from X-rays, scopes, angiogram and more – but all came back clear.
"Finally, I went to see a neurologist – Prof Orla Hardiman – who gave me the unfortunate news. I had absolutely no idea and had no expectations of anything like this so it was complete and utter shock to me, my wife and son Terence, as they sat beside me when I was given the diagnosis. My initial reaction was complete numbness: my body shut down as I tried to comprehend the news I had just heard. Anything the specialist said from there was inaudible, as I tried to buffer the shock to my system."
Roy, who is married to Lisa and has four children – Adam, Terence, Aaron and Ella – was put on medication, which he found to be lacking so decided to try and develop further methods of coping with the disease.
“Unfortunately the only treatment is a 25-year-old tablet which has very little effect on the disease, so I decided to take it on myself and to not let it have its own way,” he says. “I started taking supplements, doing various exercises, finding and reading positive material and anything that gave me a sense of positivity. I am fortunate to some degree that progress of the disease is slow.
“But, unfortunately, I had to retire from the music business because I have weakness in my arms and legs as well as respiratory problems – but although I can no longer play my beloved bass, I can still can sing, strangely enough. So, occasionally I do some work for Jump the Gun to raise money for IMNDA [Irish Motor Neurone Disease Association].”
In order to provide vital services – such as home visits, equipment on loan, advice and financial assistance towards home help – this MND Global Awareness Day (Friday, June 21st), the Irish Motor Neurone Disease Association is asking people to hold a Drink Tea for MND event to raise funds and awareness for people living with the condition.
The disease presents itself in various ways, depending on the particular groups of muscle fibres which degenerate initially. Wasting and weakness of muscles of the hands, sometimes one side at first, stiffness in the legs with dragging of one leg or the development of marked weakness in the legs may be the initial symptom. Sometimes the muscles of the tongue and swallowing mechanism are affected early, with slurring of speech, difficulty in swallowing and coughing. Some people may also experience changes in thinking, reasoning and behaviour, known as cognitive change – while others will experience mild changes but a few may experience severe changes in their thinking and reasoning.
The disease may also provoke unexpected emotional reactions, causing people to cry when they are happy, or laugh when they are sad. This is called emotional lability and can feel distressing, but it does not happen to everyone with MND.
Roy is coping well with his diagnosis and remains resolutely positive – believing that he can and will be able to overcome the disease.
“I am very fortunate to have a tremendous family who give me great support and positivity and I truly believe that this disease will be beaten,” he says. “It’s not a question of if, but a question of when. Prof Hardiman says herself that this disease is not untreatable, but it is under funded. So, I am delighted to be ambassador for the IMNDA biggest fund raiser of the year and it is my hope that we will raise as much money as possible for this extremely important organisation.
“I also want to send a message to fellow suffers and carers out there, to not lose hope and stay positive. For as long as I can, I will stand for those who cannot stand and I will be a voice for those who cannot speak. So watch your back, MND.”
About Motor Neurone Disease
- Motor Neurone Disease is a progressive neurological condition which attacks the motor neurones, or nerves, in the brain and spinal cord.
- This means messages gradually stop reaching muscles, which leads to weakness and wasting.
- MND can affect how you walk, talk, eat, drink and breathe. However, not all symptoms necessarily happen to everyone and it is unlikely they will all develop at the same time, or in any specific order.
- One person is diagnosed with MND every three days and one person passes away every three days.
- Currently, there are 374 people living with MND in Ireland.
- Anyone with any concerns should seek medical advice from their GP or call the IMNDA freephone helpline on 1800-403403
To organise your own Tea Day, visit imnda.ie to register for a free fundraising Tea Pack which contains all the essential items. Alternatively, if you wish to donate €2 to the cause text MND to 50300. For more information please call Jackie or Gemma on 1800-403403 or email email@example.com