Talking of memories at the Museum... across The Pond
It was not so long ago that Budleigh Salterton learnt of
plans to make Fairlynch a dementia-friendly museum. This followed an initiative
by the town’s Medical Centre and home care provider Home Instead which aims to
make people more aware of dementia as an illness.
Most of us associate it with the elderly, but although dementia
mainly affects older people, it is not a normal part of ageing.
From our sister-town of Brewster in Cape Cod
comes a sad reminder that dementia can strike anyone at any age.
The following article by Cynthia McCormick appeared in the
Cape Cod Times on 25 June. It is based on Brewster resident Greg O’Brien’s
brave account of his battle with the illness.
O'Brien, 63, a political communications strategist, is the
former editor and publisher of the Cape
Codder
Brewster man
shares experience of early-onset Alzheimer's
The photos of Sen. Edward Kennedy, Arizona Rep. Morris
"Mo" Udall and other personalities that line the walls of Greg
O'Brien's Brewster barn-turned-office testify to his decades in journalism.
Framed newspaper articles — "Americans Walk on the Moon" — and sports memorabilia jostle for space with family photographs, including one of O'Brien as an altar boy.
"It's kind of a time capsule," says O'Brien, the former editor and publisher of the
"It's my memory," he says.
But O'Brien says the biggest story of his life can be found in a 1940s-era photograph of a woman with hair curling softly on her shoulders.
The woman is Virginia B. O'Brien, his mother. She worked as a banker and raised 10 children, and in 2008 she died at age 83 of Alzheimer's disease — but not before passing on a genetic predisposition to her eldest son, O'Brien said.
Diagnosed with early-onset Alzheimer's disease four years ago, O'Brien says he started noticing symptoms as far back as 2001.
He fished for the right words and sometimes had problems recognizing people. "Something inside me said there's something seriously wrong," O'Brien said.
He said he believes a head injury he suffered in a bicycle accident about nine years ago accelerated the disease process.
Testing showed that he was at genetic risk, since he had the APOE-e4 gene that is present in about 40 percent of all people with late-onset Alzheimer's and is implicated in the development of early-onset Alzheimer's.
Brain scans and an MRI also confirmed the presence of the brain-wasting disease, O'Brien said.
A generation's story
He has responded the way he knows best: by sharing his experience and writing about it, in a new book tentatively titled "On Pluto: Inside the Mind of Alzheimer's."
"As a reporter, shame on me if I don't tell the story," O'Brien said during an interview in his office.
"I find myself, at 63, with a brain disease for which there is no cure, writing the most important story of my life," he said.
It's also the story of his generation, O'Brien said.
An article in the journal Neurology earlier this year estimated that the number of Americans 65 and older with Alzheimer's will climb to 13.8 million by the year 2050.
According to a
Doctors say about 5 percent of the cases are considered early onset, meaning they occur in people younger than 65.
Many patients functional
"There is a visual that somebody with Alzheimer's is in a johnny in a corner drooling," said Patricia Collins, director of family and community outreach for HopeHealth Dementia and Alzheimer's Services.
"You'd be amazed at how functional these folks are," she said. Collins said the youngest Alzheimer's patient she's worked with was 50.
"A lot of people are still working," said Molly Perdue, director of family services for Hope Dementia. They may have children in college and are wondering how to pay for retirement, she said.
O'Brien's youngest child, Conor, is still at home with him and his wife, Mary Catherine, and commutes to
His older children, Colleen and Brendan, live in
O'Brien said he wants to do his part to encourage funding of Alzheimer's research so his children don't face the fear and loneliness of a diagnosis.
"Part of what I'm doing is to raise awareness," O'Brien said. "Nobody likes to pull their pants down in public. But if that's what it takes to tell the story of Alzheimer's, that's what it takes."
Disease incidence rising
Alzheimer's disease as a cause of death increased by 68 percent between 2000 and 2010, according to the Alzheimer's Association, which said death rates for stroke, prostate cancer, breast cancer and HIV declined in that same period.
Drugs can help Alzheimer's sufferers manage symptoms, but so far they don't slow the progression of the disease.
O'Brien takes Aricept, which helps with memory, and Namenda, which can help slow the rate of decline in thinking.
He also takes the antidepressant Celexa and, when he needs help sleeping, Trazodone.
Daily runs on the treadmill help him "restart the brain," O'Brien said.
His faith in God and sense of humor help, too.
When a reporter apologizes for forgetting a question, O'Brien quips, "I have pills for that if you want."
O'Brien says he's working off a "cognitive reserve" of brain power. With wavy gray hair and wire-rimmed glasses, he is the picture of a
"Writing is muscle memory," O'Brien said.
He said his doctors told him that he should be able to write and communicate until he "lets go," which is a code phrase for the point at which the brain and body shut down almost simultaneously.
Not letting go
O'Brien doesn't have plans to let go anytime soon. He still works as a political communications strategist and will be featured in a Peaty Films project on Alzheimer's, to be released later this summer or fall.
On July 22, he is scheduled to speak about Alzheimer's at the Cape Cod Museum of Natural History with novelist Lisa Genova, the author of "Still Alice." The book is considered a realistic portrait of early-onset Alzheimer's disease.
Most early-onset patients decline quickly, but O'Brien has been able to buck those odds with determination, smarts and exercise, said Alisa Galazzi of
His book "will be a gift," she said. "He's able to tell the story from an insider's perspective. It's not about the disease. It's about life, loss and grief."
"My mother taught me how to live with it. She's my hero. She wouldn't give in to it," said O'Brien, who was editor and publisher of the
"One of the symptoms of the disease is feeling alone," O'Brien said. "There's help and there's love and there's hope out there."
Used with permission from the Cape Cod Times, a division of
Dow Jones Local Media Group
To read the post about Fairlynch as a dementia-friendly
museum click on http://budleighbrewsterunited.blogspot.co.uk/2013/06/fairlynch-dementia-friendly-museum.html
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