Seamus Mullan is joining the board of a new independent members’ organisation aimed at empowering people across the North, and will take part in a major health conference in the city next week.
The former Adria manager, who is from Drum outside Dungiven but has been living in the city for decades, will be putting a lifetime of experience and skills to use.
Five years ago the 72-year-old was diagnosed with posterior cortical atrophy (PCA), a rare form of Alzheimer’s Disease, which famously also afflicted the late fantasy writer Terry Pratchett.
He says he knew something was wrong when he stumbled over a reading at a funeral Mass.
“I can remember exactly the day I thought there was an issue,” Seamus explained. “I was asked to read at a Mass, a friend of mine, and I just stopped reading because I couldn’t make out the letters and I knew there was a problem.”
A brain scan was recommended, which originally came back negative for any neurological condition. But doctors eventually worked out that misfiring visual processors in the occipital lobe at the back of Seamus’ brain were the cause of his ailment and that was it: all of a sudden he had a dementia diagnosis.
It’s here Seamus departs from the easy stereotpyes we tend to harbour about dementia sufferers, meeting the illness with a phlegmatic and defiant response.
“The way I look at it is I’ve got a disease, called dementia,” he said. “The first time I meet a person I tell them, ‘I’ve been diagnosed with a form of dementia’.
“Apparently a lot of people are in denial right across Northern Ireland and that seems to me to be a very bad thing. I’ve spoken to lots of people that I worked with. The first thing I told them was that I had it and they said, ‘I can’t believe you have dementia’, but I do have it.”
Seamus wants people to come along to a new Dementia NI empowerment group, which meets in the Gateway Studio at the Waterside Theatre fortnightly on Tuesdays from 11am to 1pm. The next meeting is on January 31.
Seamus says its a place for people with dementia who are fed up with people writing them off to meet up.
“It’s one of the things I want to absolutely set to rights. Dementia is just like any other disease. It’s as simple as that. I don’t try to hide it and why should anyone?”