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Photo courtesy of Mary Beth Wighton

Photo courtesy of Mary Beth Wighton

Mary Beth Wighton, right, was just 45 years old when she was diagnosed with frontotemporal dementia. Now, she and her partner, Dawn Baxter, right, and their daughter Brianna, 18, are working to raise awareness of dementia that is not caused by Alzheimer’s disease, and how people living with dementia can live well.

Living well with dementia

One young Kitchener family rises to the challenges of a devastating diagnosis

By Charlotte Prong Parkhill
Kitchener Post staff

While decorating the Christmas tree this year, Dawn Baxter videotaped her partner, Mary Beth Wighton, as she pulled out each ornament.

“Mary Beth used to travel the world and we have a box of ornaments, and she always tells the story of where each ornament came from and the story behind it,” Baxter says.

Just three months earlier, Wighton, at age 45, had been diagnosed with a rare and permanent form of dementia called frontotemporal dementia (FTD), also known as Pick’s disease.

“So we thought that was really important to capture this year, because those stories could get lost,” Baxter said.

“Those ornaments will ultimately be our daughter’s, and Mary Beth wants to make sure the stories get passed down the generations.”

Wighton’s symptoms began a few years ago, with what she first thought was depression, followed by a lot of forgetfulness.

“I’ve always been a forgetful person, but this was more extreme. I was having trouble remembering my PIN number. I’d have to call Dawn,” she says.

“I was moody and very cranky. I forgot my keys a lot.”

Wighton, who did most of the driving for the family, also noticed she was often distracted behind the wheel. One day, she got lost in a neighbourhood she used to live in.

“I didn’t feel as smart. It’s a weird feeling. I just felt like I didn’t understand concepts anymore,” she says.

She underwent a battery of tests designed to diagnose Alzheimer’s disease. And she kept acing them. Over and over again, she was told she had depression. Decision making in day-to-day life was becoming increasingly challenging, and she was no longer working at the business she had been a partner in.

Finally, in September, 2012, the answer came from the geriatric department at St. Mary’s Hospital — she had FTD.

She left the hospital with a pamphlet, somewhat relieved to at last have a diagnosis. But what hurt her the most, she says, was being told she’d have to stop driving immediately.

“That was one of the few things I had left that I could do — because I wasn’t working — where I felt like I was a contributor,” she says.

With FTD, tissues in the temporal and frontal lobes of the brain start to shrink, causing symptoms such as behavior changes, speech difficulty and impaired thinking. There is no cure, and medication may only help alleviate some of the symptoms of mood swings. The symptoms continue to get worse and eventually cause death within two to 10 years.

It’s a tough diagnosis to live with, especially for the parent of a teenage daughter.

“I’ve accepted the diagnosis,” Wighton says. “I can’t change it. All I can do is live the best I can every day.”

She wants to live well in the years she has left, and to her that means being part of the community, contributing something to society and continuing to make friends.

That’s why she got involved with the Murray Alzheimer Research and Education Program (MAREP) at the University of Waterloo.

Wighton is working with the program by writing journal articles for them about her experiences and serving on a committee. She’ll also speak at the Alzheimer Awareness Month event on Jan.21. Her speech is titled Living Well with Dementia.

“I’m very excited about the opportunity of working with MAREP and that will help fill my days,” she says.

“They’re as excited about me and what I can bring to them as I am about the opportunity of working with them.”

MAREP launched in 1993 after Kenneth Murray, a local businessman and philanthropist became concerned that dementia research wasn’t being translated into practice. Director Sherry Dupuis says the program’s mandate is to work directly with people with dementia in order to challenge and change the image of the diseases that cause it.

“The image that people have of people with dementia is very late-stage,” Dupuis says. “So if somebody was diagnosed, it often is the case that people with dementia are discarded, they’re silenced.”

She recently spoke to a woman whose doctor, after diagnosing her, told her to get her affairs in order and prepare to die.

“And we know now, with earlier diagnoses and more effective treatment, people are living and functioning well with dementia for much longer periods of time.”

Wighton says doctors can’t be sure how far her FTD has progressed, but she may have as little as four years left to live.

“We’ve always said, ‘Just do the best we can every day.’ But this is sharper. We’re more in tune with that now,” she says.

cprong@kitchenerpost.ca

Next week: What lies ahead for Mary Beth Wighton, and how the family is preparing for it.

• • •

Murray Alzheimer Research and Education Program

Alzheimer Awareness Month event Jan. 21 from 10 a.m. to 12:30 p.m.
at the William G. Davis Computer
Research Centre,
University of Waterloo

Speakers, displays and video.
To register to attend, go to:
www.marep.uwaterloo.ca/
conferences/

For additional resources, go to:
livingwithdementia.uwaterloo.ca/

or www.alzheimer.ca/kw/

 

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