Eurovision star Roy is IMNDA Ambassador
Almost thirty years to the day he represented Ireland in the Eurovision Song Contest with his band Jump The Gun in 1988, Roy Taylor was told the devastating news that he had Motor Neuron Disease.
Now, just over a year later, the Dubliner who has been living in Dundalk for the past twenty years, has taken on the role of Ambassador for Irish Motor Neuron Disease Association and is urging people to support next month's Drink Tea for MND awareness campaign.
The 62 year old singer and bass player says being told he had Motor Neuron Disease sent him into shock.
'When the doctor told me it was like a bomb had gone off. Everything was in slow motion and I felt like I was pinned to the wall with the force of it. Everything the neurologist told me afterwards became inaudible.'
Roy, who is well known around Dundalk for his role with The Absolutelys, says he knew something was wrong for about six months before his diagnosis. 'I was suffering from fatigue and lack of energy and was finding it very difficult to lift the equipment at gigs.'
'I had every check you could imagine, x-rays, ultrasound, probes up and probes down, angiograms, and while everything was coming back as normal, I still wasn't feeling good.'
Eventually Roy was referred to a neurologist and that's when he was given the devastating news that he had Motor Neuron Disease.
Looking back, he says it took him three or four weeks to process what he had been told. 'I wasn't sleeping very well and when I woke up, I felt like I was wakening from a bad dream or a nightmare as it was all so surreal.'
'Eventually, after about a month, the realisation began to sink in and I found a card for IMNDA in my wallet which the doctor had handed me on the day I was diagnosed. I rang them and found them very nice and helpful. They said they were here for me and my family.'
He is determined to face his illness with positivity, which his wife Lisa says helps keeps the family going.
'I'm fortunate in that my progression has been slow and the main thing for me is to remain positive.'
Roy says that he is fortunate to have great support from his family and in-laws, who know all too well the battle he faces as Lisa's brother also had Motor Neuron Disease and sadly passed away seven years ago, a year and three days after being diagnosed.
'That was the first time we had heard about the disease,' he says.
Now, he knows all too much about the progressive neurological condition that attacks the motor neurones, or nerves, in the brain and spinal cord, leading to weakness and wasting of the muscles and difficulties in breathing and swallowing.
'There are more than 370 people in Ireland living with MND with three people diagnosed every week,' he says. 'Unfortunately as people are diagnosed, because of the nature of the disease, the numbers don't grow.'
Since being diagnosed with MND, Roy has had to give up work and had to stop playing the bass although he still manages to sing.
He says he realised he had two choices: 'I could roll up in a ball and give up or roll up my sleeves and do something about it and not let the disease define me.'
'I got together with my band Jump The Gun and we did a gig, Rock for MND, last October which raised €7,000.'
He was 'delighted' when IMNDA asked him to be Ambassador for 'Drink Tea for MND' in June and has recorded a jingle and video with Jump The Gun to promote the campaign.
Like most charities, IMNDA relies heavily on the generosity of the public to fund its work in supporting sufferers and their families and for research.
'They get 83 per cent of their funds from the public,' he says, urging people to get behind Drink Tea for MND.
Research is critical if a cure is to be found for the disease, he says, and he firmly believes that it's not a case of if but when.
There are limited treatment options for patients with MND, with Roy explaining that the medication he is on was developed 25 years ago.
'However, in the last two years, there has been a small breakthrough witg more clinical trials becoming available and patients getting better results,' he says.
Roy is delighted to use his profile as a well known musician, who finished 8th in the Eurovison with Jump The Gun, to raise awareness about the disease.
And when the Drink Tea for MND campaign ends in June, Roy plans on achieving a world first by releasing a single with some of the best musicians in the country.
He has penned a song 'Watch Your Back MND' which he hopes will raise awareness about the disease and also bring positivity to fellow sufferers.
'I will be the first MND sufferer to have written and recorded a song about the disease and I am hoping it will be an anthem for all over the world.'
Alongside the song, he is setting up a website mindyourbackmnd.com to provide information for patients.
Meanwhile, for more information on organising a tea day for MND in June, just email firstname.lastname@example.org or Freephone 1800 403 403.