Mary Beth Wighton was told by her family doctor at the age of 45 — after being diagnosed with frontotemporal dementia — to go home and “get her affairs in order.”
The doctor, she says, also advised her that those in her situation typically die within six to eight years after receiving the diagnosis — and then made sure her driver’s licence was promptly revoked.
Wighton, who was initially more upset about losing her licence than the actual diagnosis, said she was informed she “no longer had the capacity to judge things correctly.”
Now 51, she told me in a recent interview from her Southampton home that she and her partner, Dawn Baxter, fired the doctor and opted to fight the dismal prognosis.
“I thought, I’m 45 years old and I have a lot of living left in me,” she said. “For me, it was, ‘Well, this is a disease and I’m going to fight it like any other disease I might have gotten, like cancer.’”
That’s precisely when she became an advocate for people with dementia — so much so that she is part of a new Alzheimer Society of Canada campaign commencing Monday to help dispel the stigma associated with the disease.
The Alzheimer Society has launched the campaign — I live with dementia. Let me help you understand (www.ilivewithdementia.ca) — together with a new survey about Canadian attitudes towards dementia to coincide with Alzheimer’s Awareness Month.
Dementia is actually an umbrella term for conditions that are diseases of the brain and impact “everything we do and what’s happening around us,” says Mary Schulz, education director with the Alzheimer Society.
More than 500,000 Canadians currently have dementia (including Alzheimer’s disease).
Frontotemporal dementia (FTD) as the name suggests, affects the frontal and temporal lobes of the brain, the areas that control behaviour, personality and language.
Wighton, a former executive recruiter and corporate trainer who travelled the world and was responsible for a worldwide team of IT specialists, said she started forgetting financial details and making serious mistakes and became really “short-fused with people” — behaviour that was highly uncharacteristic for her.
She said she also began to struggle with concepts that she’d normally be able to understand such as themes of books, movies and TV shows.
“I was struggling to watch TV shows I always watched,” she says. “I also stopped reading books.”
Once the reality of the diagnosis sunk in, she said she took stock of what she could continue to do and what she’d be able to do with “with a little bit of help.”
Wighton says she can’t drive anymore but can ride a bike, which allows her to get into her small town and pick up the mail. She can still cut the grass, but no longer with an electric lawnmower (for fear she may make a mistake and cut the cord). She uses a push mower.
She can shovel snow and she can do the laundry.
At Christmas, she concedes she felt “incredibly frustrated” because she no longer knows how to approach cutting the turkey, a job that used to be hers.
However, she has both college and university degrees, and higher education has given her “much more ability to fight the disease” — meaning her brain has the neuroplasticity to figure out alternate pathways to do things.
Baxter, her partner of 15 years who was thrust into the role of caregiver at age 39, has been “awesome.”
“She didn’t sign up for this,” says Wighton. “But we just try and do the best we can every single day.”
Doing their best has meant understanding that Wighton’s senses are highly sensitive to noise and commotion and finding ways to accommodate that when they’re out in public or travelling in a car — such as wearing sunglasses or carrying an IPod and earphones to tune out the noise.
She is also aware that she has the “behaviour variant” — and can get angry really quickly and become very aggressive. She says she takes a ton of medication throughout the day “to level all that stuff off.”
The couple have also had to educate family, friends, doctors and even shopkeepers about what her condition is all about — and yes, says Wighton, they have lost some friends since she was diagnosed.
Some shopkeepers have laughed when she’s told them, not believing her because she’s so young.
“What I’m really trying to do is fight the stigmas with everyone I speak with,” she said. “I’m trying to show them it’s not just old people — this is what dementia can look like.”
Asked why she wanted to tell her story as part of the Alzheimer Society campaign, Wighton said since she’s able to be articulate (and she’s very articulate), she felt it important to show people that those with dementia can “live a really great life, a productive life and a loving life.”
“I want it to be better for anyone who gets dementia,”‘ she says. “It’s not all apple pie but it’s about attitude, it’s about becoming educated.”
AN ALZHEIMER SOCIETY SURVEY:
— Some 1,500 Canadians, between 18 and 65 , were questioned in an online Leger poll in November.
— 46% of respondents said they would feel ashamed or embarrassed if they had dementia.
— 61% said they would face discrimination if they had dementia.
— One in four feel their friends and family would avoid them if diagnosed with dementia.
— 56% are concerned about being affected by Alzheimer’s disease.
— A mere 39% would support family or friends who were open about their diagnosis.
— 30% admit to using dementia-related jokes.
Let's block ads! (Why?)