'All I really want to do now is think about Dad' - Brother and sister tell how they may have disease gene in last night's harrowing documentary
“Losing your mind is not something that’s easy to absorb or adapt to. People are legitimately terrified of it because it isn’t pleasant,” says Ronan Smith.
But he adds: “I don’t ever think ‘why me?’ because ‘why not me?’. It could be anyone.”
Ronan, a retired producer at Dublin’s Gaiety theatre, has familial Alzheimer's disease (FAD), the same strain of the disease that killed his father. It’s a rare form of Alzheimer's that is entirely passed down through genetics, being inherited from a parent.
His two children Hannah and Loughlin have a 50/50 chance of getting the disease, and testing is an option for them further down the line.
On last night's harrowing RTE documentary My Broken Brain, Ronan and his family told how Ronan's diagnosis has changed their lives.
“All I really want to do now is think about Dad. I don’t want to think about myself,” Loughlin explains.
“At the time of [Ronan’s] diagnosis we were told that it can skip generations. I thought it was very selfish to think about myself but of course I couldn’t help but think what if this happens to me in the future, and what age will it happen to me, and is there any way I can find out in the future, and would I even want to know in the future?”
His sister Hannah added: “Right now I don’t really want to know about the future... Apparently there are tests that can tell us if we have the gene.”
“I haven’t thought about it too much because I’m young… I wouldn’t really go there for quite a while I think.”
“It’s a huge philosophical debate and I don’t know how you would decide to do it or not to do it.”
Ronan, who advocates for better services for Alzheimer’s patients and is Chair of The Alzheimer Society of Ireland’s Irish Dementia Working Group, lives in hope that a medication will be developed to stem the disease’s progress.
“At the moment, there isn’t any medication of great effect. But lifestyle and mindset is really important in order to live as well as possible with dementia.”
“I’m very pragmatic about the fact that research is a speculation...," But he added: "You just never know where a breakthrough of learning can occur.”
Ronan has now retired from his theatre job and is writing two books, one about his father's dementia, and another about his own life.
“The first book that I’m going to attempt is my journey with my father and his Alzheimer’s. My own life and having a ;family, a career and all that and then encountering my own journey of Alzheimer’s.”
“Shaking off the workaholism which I had inherited just as surely as the Alzheimer’s from my father. I think it was very positive thing for me.”
“It’s really important that people who have Alzheimer’s disease are allowed to continue to function in society for as long as they can.”
He added: “Short term memory is the first kind of memory that you tend to lose and have difficulty with. So ancient history is your speciality really. If you’re an Alzheimer’s patient you can bore for Ireland about your past life but what you did yesterday is a bit of a problem.”
Also sharing their stories on last night's documentary were Billy Reilly, who has motor neurone disease, Cynthia Gardner (50) and Gary Boyle (52), both of whom have an early onset of Parkinson’s Disease, and Brian Byrne (40) who has very severe intractable epilepsy.