A couple fought for their right to marry 20 years ago. Now, Alzheimer's is a different kind of fight.

As a retired nurse who spent the last 20 years of her career working with elderly patients, Diana Denny’s Alzheimer’s diagnosis left her feeling angry, and then hopeless. Angry, because of the way the news was delivered—abruptly and without compassion—and hopeless because throughout her years working with Alzheimer’s patients, she had seen firsthand how the incurable disease would progress and change the minds of those in her care.

Denny hadn’t really noticed any decline in her own memory before that appointment. In fact, the 77-year-old says despite some aches and a hip that needs to be replaced, she still feels like a teenager—though smarter, she laughs.

Denny’s wife, Robin Roberts, had noticed small signs. Denny would repeat things or sometimes forget conversations they had had only a few hours earlier—but she didn’t think (or didn’t want to believe) these pointed to anything beyond normal aging. It was Denny’s family doctor who took note of the signs and, without revealing his suspicions, led her through the memory tests.

It’s been two years this July since the diagnosis, and the pair have been learning to live with this new reality. Denny knew from her professional experience that she would have to adjust to certain lifestyle changes, but what she wasn’t prepared for was the social stigma that comes with the diagnosis.

Denny is often hesitant to tell new people about her diagnosis because of the constant judgment and stigma she faces. People look at her with pity. They stop making eye contact. They begin speaking only to Roberts instead. They act as if Denny is suddenly incapable of understanding.

“They immediately think that I don’t have a brain anymore, and that I wouldn’t be able to talk to them about anything,” Denny said. “It’s very isolating… I think people are afraid of the strangeness.”

Denny and Roberts are no strangers to facing stigmas as two openly gay women. After meeting and falling in love in the ’80s, they navigated the challenges of living as their authentic selves in an unaccepting society—and raising four children as two moms. They also fought alongside other LGBTQ+ couples for the right to marry in the early 2000s.

Facing this bigotry and hate has been difficult for the couple, but finding each other and embracing their sexualities has brought so much more joy and love into their lives. Alzheimer’s has been a different kind of struggle.

The couple has been combating prejudice and bigotry for decades. But, Denny tells me, that social judgment is a lot easier to handle than judgments about one’s brain.

The Bredesen Protocol

When I first speak with Denny and Roberts, they are sitting down for breakfast in their Victoria home. The sunny table pushed up against the floor-to-ceiling window overlooking their vast garden is laden with an assortment of greens, fruits, and veggies.

The toaster pops and Denny pulls out a piece of golden-brown, gluten-free bread, packed with an assortment of seeds.

Denny used to bake fresh bread when the couple met, Roberts tells me. She would grind her own organic grain to make fresh flour for the dough. That’s what they raised their four children on.

The switch to gluten-free bread is a much more recent change because Dr. Dale Bredesen recommends limiting gluten and carbs. For the majority of the past two years, Denny has been following the Bredesen protocol, an alternative course of Alzheimer’s treatment that she says has helped her greatly.

“He’s figured out that diet is a huge factor,” Denny says, spreading goat cheese—not cow—on a seed-filled slice. “He doesn’t want us to eat a lot of starch or bread and stuff, but I have to have my piece of toast in the morning.”

There are still a lot of unknowns about Alzheimer’s and what exactly causes it, but what is known is that the disease varies greatly from person to person—a fact that has limited the common single-drug approach’s effectiveness at slowing the progression.

The Bredesen protocol is a personalized approach to treating Alzheimer’s. Instead of focusing on medication, it involves determining which factors—like genetics, existing medical conditions, lifestyle, and diet—are contributing to the disease’s progression and treating these underlying elements.

When Denny was a nurse, she recalls endless sheets of pills that needed to be doled out to the people in her care. She remembers giving out antipsychotic medications—drugs to address the erratic behaviours sometimes associated with later stages of Alzheimer’s.

In her practice, she had one man who became violent, to the point that the police had to be called to stop a fight between him and another man. She also remembers a different patient shimmying down from a communal balcony, with the help of a garden hose used for watering plants, and running away. So these medications were needed, Denny says, but she hopes her treatment plan prevents her from getting to that point.

It was Roberts who found out about the Bredesen protocol through Bredesen’s book The End of Alzheimer’s. The pair knew immediately it was a route they wanted to try.

The tests required by the treatment are only done in the US, and for Denny, this meant sending away urine samples and spit tests and “all sorts of stuff” down to the States to get tested. She discovered that she had inherited the gene from her maternal grandmother Jane.

To follow the protocol, Denny and Roberts have shifted their eating habits to a form of the ketogenic diet, called Ketoflex, which is high in non-starchy vegetables and healthy fats, and low on dairy, carbs, gluten, and sugars.

It has also meant a daily dose of a handful of supplements—which they get from a naturopath up-Island who has been trained in the Bredesen protocol—regular exercise (hip permitting), and a healthy amount of sleep.

It also involves cognitive games, but Roberts and Denny found the suggested online games too boring, so they started learning French instead.

Though Roberts couldn’t guess at an exact number, over the past two years, the couple has spent a “substantial” amount of money on the initial tests, supplements, and trips to the naturopath. The tests alone cost more than $1,300 US. None of this is covered under BC’s health-care plan.

Roberts still works as an English tutor a few times a week, but otherwise they're getting by on their retirement savings and Denny’s pension. They also feel lucky to own their home—and to have sons who can help with maintenance.

“Six hundred dollars a month now doesn’t quite do it, but it’s worth it,” Roberts said. “As far as we’re concerned, we would rather spend money first on our health than anything else.”

Doctors haven’t always been supportive of the route they have chosen, but the pair are confident they made the right call.

And for Denny, the treatment has meant regaining some control over her own health.

Diana Denny was diagnosed with Alzheimer's two years ago. Photo: Robin Roberts

‘The brain is so plastic’

The Bredesen protocol has been met with a fair amount of criticism from the medical world, with experts questioning the price and the rigor of the research, which some say is largely unproven and based on shoddy methods.

However, Marie-Ève Tremblay, UVic associate professor and Canada Research Chair of neurobiology of aging and cognition, says that Bredesen may be on to something. Tremblay has been studying ways to treat the disease by looking at how different risk factors—like lifestyle, diet, and sleep—influence the progression of Alzheimer’s.

“At the moment, there’s not really many good treatments,” Tremblay said.

Alzheimer’s patients show changes in their brain—like an accumulation of amyloid plaques—that cause a loss of neurons and connections. Current prescribed medication treats these symptoms of the disease, not the nebulous root causes.

A commonly prescribed Alzheimer’s drug is Memantine, which works to decrease abnormal activity in the brain. Earlier this month, the FDA approved another drug, Aduhelm—the first new Alzheimer’s treatment approved since 2003—that targets the “fundamental pathophysiology of the disease.” It’s an antibody against the amyloid, the hallmark of Alzheimer’s, but it’s also highly controversial because critics say there isn’t enough evidence that it actually works or that reducing amyloid even improves brain function. The drug has still not been approved in Canada.

Though studies have been promising, the variable nature of the disease makes it unclear how effective the drug will be for different people at different stages. But still, the drug is only treating the symptoms. It may slow down the progression, but it won’t stop the disease.

Tremblay says Bredesen’s research is a jumping off point, but she’s finding reasons to be optimistic about it. Her own research is showing more and more that lifestyle changes, like those recommended by the protocol, could be the best solution, especially in the disease’s early stages. And the questionable effectiveness of the protocol, Tremblay says, also comes down to the disease’s many forms.

“When people do clinical studies, I think it’s difficult to achieve significant results because of this huge amount of variability,” she said. “People also that are at different stages of the disease will not respond in the same manner.”

The Bredesen protocol has claimed reversal of Alzheimer's in some cases, something that has never been observed before. Tremblay says while this would be a first, it could be possible if the patient was at the very early stages. “The brain is so plastic,” she said. “I think it’s possible to have some reversal.”

Denny is still in the early to mid stages of the disease’s progression, and she has days that are worse than others. Lately, she says her brain has felt much less foggy than it has previously. And while sometimes she can’t remember recent conversations she has had with Roberts, she’s confident she can still draw a Renault 16 car from memory.

“Yes, I do forget things,” she told me. “But, so what?”

Finding each other

Denny grew up in the Okanagan in the ’40s and ’50s, and spent her childhood days playing in the orchards.

Later, she followed what could be considered a traditional path: went to nursing school, got married, and had three children. Coming from a small town, she didn’t even know what a lesbian was until she met Roberts.

Denny says when they eventually did officially meet, she was drawn to Roberts in a way she couldn’t explain, “but we sure knew we had to be together.”

It was the early ’80s, and Denny and her husband at the time were building a 32-foot wooden sailboat. Roberts and her then-husband, both avid sailers, came by to see the progress.

“They think that you go out, making a choice that you want to be a lesbian. Well, that wasn’t the truth with us. At all. We were surprised,” Denny said. “It just slammed us in the face when we met.”

Roberts remembers feeling right at home as soon as she stepped into the house Denny’s husband had built. The floor-to-ceiling windows reminded her so much of the home she grew up in, and the pair’s two youngest children got along beautifully, playing with the wooden toys Denny’s husband had built.

Roberts had a different kind of upbringing from Denny. Growing up in Vancouver’s north shore in an open-minded family, she had spent time with members of the LGBTQ+ community through a family friend’s theatre company where she worked as a teen. So women falling in love with other women wasn’t a foreign concept to her. But she still didn’t anticipate falling in love with Denny.

Roberts looked down at Denny’s Birkenstock-clad feet and commented on the choice of sandals, which happened to be the only other pair of shoes Roberts owned. Denny, with a laugh, noted Roberts’s Rockport non-slip boat shoes—also the only other pair of shoes Denny owned.

“I just felt totally at home. It was easy for me,” Roberts said.

It took them 10 months to unravel their respective marriages and make sure their ex-husbands were OK. Roberts, whose only son was four, had to learn to parent Denny’s two teenage boys, along with her five-year-old daughter.

Denny’s mom always liked Roberts, but when the couple visited the Okanagan, she would tell Denny to not introduce Roberts to friends as her partner. “They’ll just feel sorry for me,” Denny’s mother said at the time.

“It was damn hard for us living in this community,” Denny said. “That whole generation was totally nuts.”

It comes back to people being afraid of things they don’t understand, she tells me. With Denny’s Alzheimer’s diagnosis, she says people don’t know what’s going on in her head, so they don’t know how to act when they’re around her. It can be insulting, undermining, and rude, but Denny understands it comes from a place of ignorance.

Ignorance is also largely at the root of the bigotry Denny and Roberts have faced as a lesbian couple. But after decades of being told their love was unnatural, they couldn’t marry, couldn’t raise their children together, the couple took an opportunity to take a stand.

At the turn of the millennium, Roberts and Denny would sign on as one of the litigant couples in the case to legalize same-sex marriage in the country.

“We looked at each other and said, this is something we could do for the youth of Canada so they don’t have to go through what we went through with all the judgments,” Robin said.

In BC, same-sex marriage was legalized in July 2003, and on Aug. 21, 2004, Denny and Roberts got married after 21 years together. “It was funny that that’s when we got married,” Roberts said. “Because in our day, 21 was the legal age of being independent.”

A year later, on July 20, 2005, the Government of Canada enacted the Civil Marriage Act, officially legalizing same-sex marriage—the fourth country in the world to do so.

Things were still not easy for the couple; they still faced a barrage of bigotry and hate. But being accepted in the eyes of the law was a big step.

And Denny’s mother did come around to her daughter and Robin’s relationship. She lived to 98-and-a-half years old, and spent the last four years of her life living in the couple’s Victoria home. Her brain was sharp until the end, but cancer was taking over her body. She was ready to go.

Medical assistance in dying was made possible in 2016 due to another landmark Supreme Court decision, and Denny administered the drug that would slowly put her to sleep and stop her heart. She died in Denny’s arms as a group of Wilson’s warblers flew outside the window. Their dog, a labradoodle, stood quietly by the side, then started playing gently with their new kitten underneath the bed.

“It was all really peaceful,” Roberts said. In the end, we all just hope to be with the ones we love.

Numbers and dates

As our conversation draws to a close, Denny shows me a photo of their newest grandchild who would be visiting later in the afternoon.

She was just born in May, Denny says. No, March, Roberts corrects her.

Denny has never been good with numbers and dates. In school, arithmetic was her worst subject, and when Denny’s doctor asked her to count down from 100 by subtracting sevens during the Alzheimer’s tests, she knew she wouldn’t do well.

These things are a little bit harder now, two years later, but Roberts is always nearby to help. Roberts has always been good with numbers and dates.

“I know I’m different from a lot of people with Alzheimer’s,” Denny says, “because they don’t have somebody like Robin.”

The lifestyle shift, the exercise, the diet: these haven’t been changes Denny has had to do alone. Roberts has taken this journey with her.

They’ve travelled the world together, helped change the law for generations to come, and they’ll face this challenge together, too.

“There are all different ways of dealing with things,” Roberts said. “But compassion is one of the biggest things when we’re talking about people. Compassion, you need to have compassion.”