After losing mother to Alzheimer's, 72-years-young Easton woman bikes to raise awareness

EASTON – Ann Whaley-Tobin was biking to work in Boston when she passed by a tabling event in Government Center for The Memory Ride – a state-wide bike ride that raises money for Alzheimer’s research.

It was Friday morning in May 2010, and her mother had died of Alzheimer’s disease nearly three years prior. She had also just picked up bike riding.

“It was, like, meant to be,” she said. “Sign me up.”

A few weeks later, at age 60, she completed her first ride with what’s now called the Ride to End Alzheimer’s – New England to raise money for Alzheimer’s research and resources for families.

"My mom suffered with it for a long time," she said.

Twelve years later on June 4, 2022, Whaley-Tobin completed her twelfth consecutive ride at age 72.

It was a cloudy, windy day in Hampton Beach, New Hampshire. Alongside two other women – Ellen Dirgins and Deb Menz, both in their 50s – Whaley-Tobin rode 62 miles in five hours.

“I felt really good,” she said. “For 72 years old, I did well.”

Whaley-Tobin said it was a perfect day for riding. It wasn’t too hot or too cold, although the blowing wind was a bit too chilly. The course was “hillier” than in years past – it used to take place in Fort Devens, then in Rye, New Hampshire. It was the first time it was held in Hampton Beach.

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"I'm not great on hills. I'm very, very slow on hills," she said. "I always say 'I can do this' as I'm going up the hill ... This is not as hard as people who are going through Alzheimer's."

With her team, "Team Hope," dressed in matching purple sports jackets and black biker shorts, Whaley-Tobin strapped on her blue helmet and mounted her bicycle. She made a heart that she attached to her shirt with the names of people who donated, and others who have struggled with the disease, to remind her of what keeps her going.

'Even doctors didn’t know that much about it'

Whaley-Tobin and her family knew something was wrong when her mother, Connie, stopped acting like herself. Portions of her personality began to change. She’d put her pajamas in the oven to keep them warm (with the oven off). She’d ask strangers to carpool.

“That made sense to my mother,” Whaley-Tobin said.

They brought her to the doctor, who told them it was just a symptom of old age.

But they knew there was something more.

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“When my mother was diagnosed, there really wasn’t that much known about Alzheimer’s. Even doctors didn’t know that much about it,” she said. “It was almost a relief when she was diagnosed because then we knew there was a reason for it."

Whaley-Tobin took her mother to a geriatric specialist, who officially diagnosed her with Alzheimer’s disease. She was 80, but had been showing signs starting in her late 70s.

Her older brother took the brunt of the responsibility. Their mother was living in Connecticut where Whaley-Tobin and her siblings grew up, while she was living in Canton.

"We knew that she was no longer safe by herself," she said.

Whaley-Tobin's mother told them that she never wanted to move out of her house, but she needed professional assistance. They started sending her to a program that took care of her during the day. After a while, once she got comfortable, she moved into the place permanently.

Eventually, her mental stability truly began to deteriorate. She would hit others in the facility with her cane. She needed to move to a nursing home.

"It was hard to see her deteriorate like that," Whaley-Tobin said.

Whaley-Tobin's mother, at age 88, died on June 3, 2007. Whaley-Tobin was 57.

Although she had always been active, and took many spin classes in her free time, Whaley-Tobin wasn't serious about cycling. Once her mother died, she starting biking more regularly until, eventually, she biked past the table for The Memory Ride in 2010.

Heart healthy, brain healthy

Alzheimer's disease, particularly early onset Alzheimer's, is considered heavily genetic. Whaley-Tobin's aunt and one of her cousins also died from the disease. Another cousin has dementia – an umbrella term for illnesses that cause significant mental decline.

According to the National Institutes of Health, a child of someone who suffers from early-onset Alzheimer's (when it develops before the age of 65) has a 50% chance of inheriting the gene for the disease.

The Centers for Disease Control reports that roughly 5.3 million Americans suffer from Alzheimer's, with the risk for the disease doubling every five years over the age of 65. The CDC projects that cases will nearly triple by 2060.

Although researchers have a solid understanding of how Alzheimer's impacts the brain, it's not yet clear how to prevent it or treat it. But researchers are "studying many approaches to prevent or delay Alzheimer's," some focusing on drugs, others on lifestyle changes, according to the NIH.

Frequent physical activity has many health benefits not just for the body but the brain, including reducing the risk of depression, and some studies have shown that "exercise may help delay or slow age-related cognitive decline," the NIH says, though it cautions that there is not yet enough evidence "to conclude that it can prevent or slow" Alzheimer's dementia in particular.

Some good news

Whaley-Tobin has always tried to be active throughout her life, and the possibility of developing the disease is one motivator for her cycling.

"There is a fear, because Alzheimer's can run in families," said Whaley-Tobin. "I have really tried to take care of myself in that respect."

Starting four years ago, she began participating in the IADL study at Harvard – a 3-year-long research project studying how changes in daily living might indicate early signs of Alzheimer's. With her last session taking place a few weeks ago, researchers determined Whaley-Tobin has no early signs of the disease.

Raising awareness

Whaley-Tobin started volunteering for The Ride to End Alzheimer’s – New England in 2011 and each year, she helps organize the event.

“Maybe there was some sense of guilt," she said. “It was just my way of giving back.”

Team Hope raised just under $3,000 by the date of the ride, nearly reaching their goal of $4,000. Of that, Whaley-Tobin raised over $2,000. At the site of the ride, a large poster board listed the names of the ride’s top fundraisers, and her name made the list.

As of now, even following the ride, Team Hope has raised $4,157, and Whaley-Tobin has raised $2,600 herself. The event raised a total of $688,785, which was the largest sum the event had ever raised. Typically, it comes in around $350,000 to $400,000.

Aside from the bike ride, she has given various talks on the disease at the Massachusetts State House to help raise awareness, particularly within the medical field.

“Maybe (I'm) finding a way so that other people didn’t have to go through what we went through," she said.

Fifteen years after Whaley-Tobin lost her mother, we now have a better understanding of Alzheimer's disease, and many resources exist to help victims and their families through the challenging illness.

Whaley-Tobin doesn't show signs of slowing down.

She bikes year-round, provided the roads aren't blocked by snow. She can still get up to 20 mph on a straightaway.

"I just cannot sit still," she said. "If I need to get an electric bike when I'm 80, I'll do that."

This article originally appeared on The Enterprise: Easton woman who lost mother to Alzheimer's bikes to raise awareness