A LIMERICK man is set to star in the pilot episode of a new Netflix documentary that focuses on the stories of people living with different types of dementia.
Kevin Quaid, who now lives in Kanturk, County Cork, was diagnosed with Lewy body dementia at the age of 53, following an initial diagnosis of Parkinson’s disease.
Speaking to the Limerick Post, Kevin said that when he got his diagnosis, he believed that, because his memory was intact, he couldn’t possibly have dementia.
“The day she the doctor told me I had Lewy body dementia, all I heard was ‘dementia’. I didn’t hear ‘Lewy’, I didn’t hear ‘body’, all I heard was ‘dementia’.
“I said ‘you must be wrong, there’s nothing wrong with my memory’, because I thought dementia was Alzheimer’s, memory loss, end of story. But that couldn’t be farther from the truth,” Kevin explained.
“It took about about six months before it even sunk in for us because I’d be so good during the day, but my nights would be horrific.”
Kevin explained that with his dementia, he suffers REM sleep behaviour disorder, which leads to him having incredibly graphic and realistic nightmares.
“I can have horrific nightmares where I’m murdering people, there’s people after me, there’s people trying to kill me, I can wake up at night in bed crying because I won’t know who I am, I won’t know where I am, I definitely won’t know who’s lying along side me.”
Kevin says, in instances such as these, it’s only the voice of his wife Helena that brings him back to reality.
“I turned my life into advocacy work”
Five years ago, despite his diagnosis, Kevin wrote a book about his experiences with Lewy body dementia, one of the first people in the world to write a book on the disease from the patient’s perspective.
“I turned my life into advocacy work. I have a shed outside and my sons and son-in-law turned half of it into an office, and I get up and put on my shirt and tie and I go out there in the morning and I do advocacy work.”
“I’m chair of the Irish Dementia Working Group, I’m vice chair of the European Working Group of People with Dementia for Alzheimer Europe, and I’m co-founder of Lewy Body Ireland, which will be launched later this year,” he proudly states.
As well as that, Kevin is involved with universities around the country, and various other groups and organisations, along with providing motivational speaking. He published his second book last year.
Bucket list with an ‘F’
Kevin says that more education is needed when it comes to dementia, both for the public and the doctors who diagnose it.
“If someone walked into a doctor’s office in the morning and they said they had cancer, or a touch of cancer, they wouldn’t leave it at that. They’d know the type, the stage, the medication, and there’d be a plan put forward – either that the show was over or that it could be sorted. We want the same to happen for people with dementia,” Kevin said.
“I literally tell doctors that if you have given a diagnosis of dementia, or a touch of dementia, then you haven’t given a proper diagnosis.”
He says that despite his diagnosis of Lewy body dementia, he doesn’t let it hold him back. Earlier this year, along with a group of doctors, neurologists, and other people with dementia, he walked 40 kilometres of the Camino in Spain.
“Another thing that was on my bucket list – I don’t call it a bucket list, I change the ‘B’ to an ‘F’, so that’s what I call it – I always wanted a tattoo, but I didn’t know what. I got a shell tattooed on my arm,” Kevin laughed.
The documentary makers, working on the pilot of a series to be broadcast on streaming giant Netflix, visited Kevin in his home, as well as in his local area of Kanturk, doing things like going to get coffee or to the pub for a drink to show that, even with a dementia diagnosis, it is still possible to live a somewhat normal life.
“It’s a pilot series that they want to do. There’s seven other people that they want to do documentaries on, so this will be the first of eight.”
Kevin says the key is keeping your brain active following a dementia diagnosis.
“My neurologist keeps asking me how I’m as good as I am because, in theory, I should not be alive,” he said.
Kevin’s books ‘Lewy Body Dementia Survival and Me’ and ‘I am Kevin, Not Lewy’ are available online. The launch of Lewy Body Ireland, which Kevin co-founded, will take place later this year.
