Charlie Bird said he doesn’t want to be ‘famous just for dying’ as he has opened up about his struggle to eat as his health has deteriorated in recent weeks.
The veteran RTE broadcaster was diagnosed with Motor Neurone Disease last year and has been sharing his story publicly and candidly with friends, fans and followers online since.
Whilst he physically looks fine as he prepares to climb Croagh Patrick next month, he and his wife Claire said the reality is that he is struggling internally - as he is losing his voice and his ability to swallow, and told how his greatest fear right now is ‘choking to death’.
“The last couple of weeks haven’t been good,” the journalist, 72, said.
Speaking to RTE Guide, he explained: “When I sit down to eat I have a problem every time and nobody sees that except Claire.
"I never know if I’m going to end up choking and coughing and that is my greatest fear.
"The medical staff tell me that I won’t choke to death but when I'm here with Claire, it’s no fun, it’s scary.
He admitted: “I have that fear always in my head every day when I eat my food.
“If you look at me, I appear healthy.
“I was losing weight but I've put it back on again. But my motor neurone is here (indicating to his head) and not in my legs.
“That is what is going to do me in, in the end. I know that.”
Since announcing his diagnosis last year, the beloved Irish broadcaster has received an outpouring of huge support nationwide.
And whilst he told that he has planned details of his funeral, Charlie admitted he finds it difficult to read letters from people who have opened up about losing a loved one to the same disease.
“Some of the letters I get are from people who tell of their relatives who have died of motor neurone. I know why they write that, but it’s also painful as it’s a constant reminder of what is ahead for me.
“So I don’t look at Dr Google any more.
“We used to do that and we’d sob our eyes out as we read.”
He went on: “I hate to use the words but I have a terminal illness.
“Someone diagnosed with motor neurone lives for about one to three years.
“Who knows how long I have left?
“Now more and more people are coming up to me because I'm dying, but I don’t want to be famous just for dying.”
However, the well known journalist who is behind ‘Climb with Charlie’, a campaign that started with his dream of climbing Croagh Patrick but has grown into a national event that has already raised over half a million euro for Pieta House and Irish Motor Neurone Disease Association, said he feels some 'bigger power' is pushing him on at the moment.
“I am in a better place now than I was and that is because I have a purpose in life. Last year, my goal was to get to Christmas. Now my goal is to get to September, when I will be 73-years-old. If I make that, I will be happy.”
His wife Claire agrees, adding: “In the beginning, the medical people told us that we would eventually accept the diagnosis and we thought that there was no way we would.
“But we have accepted it. So now it’s all about enjoying each other every single day. And we’re enjoying planning this climb. That may sound bizarre as Charlie is terminally ill, but it is a complete distraction and also doing some good.”
On April 2, Charlie will head for the summit at Croagh Patrick with his wife Claire, his two daughters Orla and Neasa, and grandchildren.
The climb, which will also see hundreds of others, including some well known faces including Daniel O’Donnell take part, will also be filmed for a TV documentary on Charlie Bird’s life.
