BOLTON-BORN Norman McNamara was just 50 years old when he was diagnosed with dementia. Not one for self pity, he decided to tackle the terminal illness head on and fight for the rights of people living with dementia.
Mr McNamara went on to found the Torbay Dementia Action Alliance and the international Purple Angel organisation. He speaks to The Bolton News about why people living with dementia should not be seen as “sufferers”.
TALKING to Norman McNamara, you would not know he has dementia.
He speaks eloquently about the rights of people with the illness and has ambitious plans for his dementia awareness organisation — the Purple Angel.
What most people do not know about Mr McNamara, is he is gradually losing the ability to carry out everyday tasks, such as getting dressed in the morning.
He knows eventually he will forget how to do everything but says he is not frightened.
Mr McNamara said: “I want people with dementia to know that you can live a full life after diagnosis — especially if you catch it in the early stages.”
Mr McNamara, who was brought up in Astley Bridge, moved to Devon 16 years ago where he founded the Torbay Dementia Action Alliance.
He was just 50 when “the fog” of undiagnosed dementia fell on his family.
Unbeknown to Mr McNamara, he had started to forget how to do day-to-day things like shaving and repeatedly left pans of food to burn on the cooker.
But he thought he was fine.
It was his wife Elaine, a carer, who picked up on the symptoms and insisted on going to the doctors.
He was diagnosed with the dementia known as Lewy Bodies. A form of dementia where tiny clumps of abnormal protein form in the brain. These are also present in the brains of people with Parkinson’s disease.
Mr McNamara, aged 56, said: “People always ask me how I knew I had dementia but I didn’t have a clue.
“When I was shaving one day, I put the foam all over my teeth and tried shaving them.
“To me that seemed perfectly normal.
“I was convinced I was right and the whole world was wrong. It turned out to be the other way round.
“Fortunately my wife was a carer and spotted the symptoms. As soon as I was diagnosed, I was put on medication and that made me feel a little bit better.
“It was like I came out of a fog. I realised how poorly I had been.
“I had lost my father and my grandmother to dementia so I knew what it meant.
“I was devastated at the time. It was not so much for me but for more my children and grandchildren because you wonder what lies ahead for them.”
The family adapted to Mr McNamara’s illness but he was shocked by the lack of support for dementia sufferers — particularly in shops and banks in Torquay.
It was there the father-of-five came up with the idea of awarding Purple Angels to dementia aware businesses.
“I was in a shop one day and I was struggling to count my change so I said to the sales assistant: ‘Bear with me, I have dementia.’ He laughed and said: ‘Me too’.
“When I left I decided I had to do something about it. I didn’t want anyone else to go through that humiliation.” Mr McNamara gave out guidelines on dementia to businesses across Torquay to ensure as many staff as possible understood the illness. In turn each business displayed the Purple Angel logo in their window.
The logo — inspired by his wife Elaine — is now recognised in businesses across the UK and in 78 different countries.
His work has also been championed in his home town by the Bolton Dementia Support Group, who all wear Purple Angel badges.
Mr McNamara went on to found the Dementia Awareness Day, held every year on September 17.
He has become well known for championing the rights of people with dementia, but behind closed doors has to live with the serious symptoms of the terminal illness. But Mr McNamara has night terrors and hallucinations every night and suffers with “sundowning”, meaning he becomes more restless and disorientated as the day goes on.
“The way I describe dementia is like a Christmas tree adorned with lights,” he explains.
“Think of each light as a memory. When you have dementia each of these lights gradually goes out — including the one reminding you how to breath.
“But if you get early diagnosis you can engage with the existing memories and lead a good life.
“We are not dementia sufferers — we live with dementia.”
For more information about the Purple Angel, go to: purpleangel-global.com.
For details of dementia support in Bolton, call the Bolton Dementia Support Group on: 01204 386696.