Yvonne Tobin’s father, Jim was diagnosed with the devastating disease when he was 74 just a year before he passed away from the neurological disorder.
Yvonne from Skyrne in Co ,Meath has opened up about the heartache of watching her father die from the condition and praised RTE news reporter Charlie Bird for his bravery in speaking out about his struggles with the disease following a harrowing interview on last week's Late Late show. She said:
"My advice would be to take it day by day. Enjoy every day with them, some days are so tough but be so thankful you have them. Accept help when it’s offered, reach out when you need it. I cared for Daddy and it’s hard, so take and seek help.
"The Irish Motor Neurone Association was invaluable to us, the palliative care team , our public health nurse and all the team in the Dunshaughlin Health Centre. I genuinely would have been lost without them.
"Recently we’re beginning to hear more and more about prominent sports people and household names like Charlie Bird, Roy Taylor, Doddie Weir, Rob Burrows, to name just a few being diagnosed.
"Strong healthy people often struck down in the prime of their life. It really saddens me but they have been hugely important in raising awareness and have helped so much."
‘Gentleman Jim’ as he often referred to had a glittering showbiz career in the golden showband era of the late ‘60s and ‘70s. He started with The Firehouse in 1969, after joining a local band called The Craftsmen.
He spent the next 12 years with them at the top of the country and Irish field of music. Later, Jim Tobin and The Firehouse became a household name after reaching number one with their first record, a Jim Reeves song, ‘This is it’.
In the past Yvonne has been Involved with fundraising for Motor Neurone Disease Ireland and believes more research needs to be carried out to help patients and their families. Speaking about coming to terms with her father's death she said:
“I know no disease is easy to witness or cope with but MND really is one of the most horrific relentless diseases to witness take hold of someone you love. Nothing could have ever prepared us for the road that lay ahead. Everyday day can hold a new challenge and you feel so helpless. It’s just heart-breaking.
"Losing his voice was probably the hardest part, although he hadn’t lost his speech, the first thing he lost was his ability to sing. This was particularly hard knowing we would never hear him sing again, his voice was so deep it always filled the house, so in that respect the silence was quite literally deafening."
Yvonne, a flight attendant with Aer Lingus says that growing up with a famous dad wasn’t something she or sister Avril thought to be unusual as music had been the centre of the family’s life for as long as she can remember. She added:
“Music was everything to him, we grew up in a house full of music. It didn’t seem unusual for us to walk into a room and have Big Tom there in the living room, it was normal.”
"Losing him was probably the toughest thing I had to deal with in my life. He was such a gentle soul, a wonderful kind, funny and loving man. From the day he was diagnosed he never became a victim of MND."
It has been a challenging few years for the Tobin family with Jim’s wife of 45 years, Caroline passing away suddenly at 62 in 2015, and Yvonne’s husband, actor Alan O'Neill, also tragically passing away in 2018 at the untimely age of 47, leaving behind their two children.
"To witness what he endured over those final months of life was so traumatic and will be etched in our minds and hearts forever," she recalls.
"I would give the world to have him back, but not with MND, so I know he’s at peace with Mammy and I wouldn’t have him back for a second to continue to suffer as he did."
"I suppose the only way I cope, is knowing Daddy won his battle with MND, and is now MND free."