The Banner team knew they had to provide some kind of incentive for pharmaceutical companies to invest in their idea. They thought maybe the way to go would be to convince the FDA to fast-track its approval for drugs that showed promise in the shortened trials. Already, there were hints that the government would be open to that kind of flexibility as the public gradually became more aware of how serious the Alzheimer’s crisis could become.
Shortly after the Banner Alzheimer’s Institute was established, the Alzheimer’s Study Group—a nonpartisan organization cochaired by US Senators Newt Gingrich and Bob Kerrey, and including such heavy hitters as Supreme Court Justice Sandra Day O’Connor—began to develop a plan for addressing the slow-moving storm of Alzheimer’s.
During the group’s early years, Gingrich traveled to Arizona and met with members of the consortium to discuss their idea of accelerated studies.
“Eric, how many prevention therapies do you think you’re going to have to study before you find one that works?” Gingrich asked.
Reiman glanced around at his colleagues, and said, “Let’s be conservative; let’s say ten.”
“How much do you think it would cost to study a prevention therapy?” Gingrich asked.
“Let’s say . . . fifty million,” said Reiman, although as it turned out, he was lowballing.
“So let’s see if I’ve got this right,” the senator said. “You’re telling me we might have a way to be able to reduce the risk of Alzheimer’s disease with a five-hundred-million-dollar investment to study ten treatments for a disorder we know, with a certainty, is going to cost one-point-three trillion dollars a year. Who in his right mind would study just one at a time?”
Reiman smiled his broad, eye-crinkling smile.
“Exactly,” he answered.
• • •
As he wrestled with the catch-22 of biomarkers and clinically proven end points, Reiman formed a powerful partnership with Pierre Tariot, the son of a World War II French refugee who had established an enviable reputation in clinical trials for Alzheimer’s patients.
At the University of Rochester, Tariot built an impressively large clinical trial program specializing in Alzheimer’s disease and prevention. He was also a remarkably compassionate and beloved doctor, and when one of his patients died, her widower offered Tariot money to create a program in honor of his late wife. When the university declined to create the program, Tariot teamed up with Reiman in Arizona.
“I was considered a person with a lot of ideas and vision,” Tariot reflected. “I think Eric is the only person I’ve encountered whose vision is grander and more inspiring.
“I said, ‘Let’s do this.’ ”
Seventeen
EXPELLED FROM EDEN
THE INTERNAL STRUGGLES that Lori McIntyre had been describing to her friends and family for two years were finally becoming uncomfortably apparent to the outside world. Where once she was able to make herself at home in a boxcar, she now became hopelessly disoriented with her frequent relocations as a railroad wife. She could no longer balance the checkbook or work a cash register.
The time had come, as she had known it would, to answer the question that had been lingering in the back of her mind for years: Had the disease marked her, as it had her brothers and father? Unlike Dean, she held no illusions about the answer; she was practical, focused, and ready to face down whatever came next.
Bill Klunk paid for Lori and for Doug’s twenty-one-year-old daughter, Jennifer—who had relocated to Tioga to be with her father—to undergo genetic testing there as part of his study. They went to see John Martsolf, the same doctor from the University of North Dakota who had met with the extended family in 2004. When the results were ready, Martsolf said he wanted to discuss them in person, so everyone gathered in Grand Forks, North Dakota, for Easter 2006.
In true DeMoe fashion, the meeting was an extended-family affair: Steve accompanied Lori, and Jennifer brought her boyfriend, both of her parents, both of her grandmothers, and Doug’s then girlfriend. Karla and Dean tagged along for added support.
• • •
Jennifer DeMoe was more frightened than she had ever been in her life.
Though the decision to know her results was terrifying, she made up her mind that if she tested positive, she would not have children, for fear of passing along the mutation. Since she had always wanted kids, she felt that she needed to know whether that was a dream she would have to abandon.
Unlike their parents, who had been blissfully ignorant of the mutation when they’d started their families, the next generation of DeMoes would face this added dilemma: whether to have children. It was a deeply personal decision, but one for which the outside world—even other family members—would judge them mercilessly.
Jerry DeMoe’s two daughters, Sherry and Sheryl, were already married and raising children. The sisters were close, despite their ten-year age gap; even so, Alzheimer’s was one topic they rarely discussed. Their mother, Sharon, worried privately that Sherry, her older daughter—who was approaching forty—was becoming absentminded. Sheryl, who was younger, wanted to get tested, so she would finally know her status. She just wasn’t sure when she would be emotionally ready to do it.
The Wisconsin branch of the family was particularly split over the issue of children. When Dawn’s daughter, Leah, got married and became pregnant, her grandfather Rob and aunt bluntly told her she was making a mistake, since she didn’t know whether she carried the mutation.
It wasn’t as though Leah was a stranger to the disease. Both her mother and grandmother were in nursing homes. In fact, all three of Pat and Rob’s daughters—Dawn, Robin, and Colleen—had now been diagnosed with Alzheimer’s—and the cure that Dawn had once expected still hadn’t materialized. Dawn’s sisters each had children but were now single mothers, further isolated by their rural location and the family’s acrimony.
Just knowing whether the next generation carried the gene—apart from the question of whether to have children—was becoming a point of heated debate. Deb DeMoe, for example, begged McKenna and Tyler to stay unaware. Having felt blindsided by Dean’s diagnosis, she wanted them to forget about the possibility of inheriting the mutation and live their lives as normally as possible.
Leah’s husband had grown up in a family with handicapped siblings. He didn’t see the value of Leah burdening herself with the disease. To him, all life had worth, and he would love her no matter what. Alzheimer’s had already impacted her relationship with her mother; now that she had finally found some joy in her life, what was the sense of potentially throwing it all away? Her father, a Type I diabetic since childhood, agreed. It was important to focus on life, not worry about death.
Leah said if she had a positive test, she’d simply keep it to herself.
“If I got my results, and somebody told me yes, I wouldn’t be like, ‘Hey, I’ve got Alzheimer’s!’ ” Leah said. In fact, she told very few people about her family’s history; it was a form of self-preservation.
“I guess I don’t want it to be five years down the road, and you do something weird, and they’re like: ‘Hmmmmm,’ ” she said.
But Jennifer was convinced that she needed to know. Although her mother, Lola, was remarried and living in Nebraska with her new family, she agreed to come with Jennifer to learn the results. When Lola saw Doug, she embraced him and said, “I’ll be here for you.”
• • •
Dr. Martsolf first asked the group how they’d like to receive the news: all together, or in private? They voted to learn all at once. The tension was palpable; so much was riding on those results. Karla could hardly stand to hear what came next.
Dr. Martsolf read Jennifer’s results first: She did not have the mutation. The walls exploded as everyone screamed with joy, and Lola began bawling. Only Doug was silent, seemingly as oblivious to the good news as he had been to his own misfortune.
In the ensuing happy confusion, most of the family left the room. Karla stayed behind with Lori and Steve.
To this smaller group, Martsolf delivered the mortal blow: Lori had tested positive. Despite all the advance warning, Karla was devastated. Her sister had been right. Just as when they’d been growing up, Lori knew her own mind better than anyone else did. The sudden high from Jennifer’s news plunged sharply into despair. Lori lived so far away, and Karla wanted desperately now to protect her, to take care of her, in a way she had never known before.
But Steve and Lori were quiet, impassive—much the way Dean had been, but for a different reason. He had been trying to protect his wife by showing her he wasn’t afraid; Lori had been expecting bad news. The doctor asked Lori why she didn’t react more dramatically.
“Because in my heart, I already knew I had it,” she answered simply, and at that point, Karla could see how deeply despondent Lori actually was, no matter how carefully she had prepared for this moment. “It wasn’t a surprise.”
It was an Easter that Karla would never forget. The sister who had always been her polar opposite, this wildly unconventional girl, was now bound to her by the inheritance that was taking over their lives. Their mutual need to escape their father’s long shadow had always been the one thing they had most in common; ironically, their failure to escape was uniting them again.
After the meeting, the family decided to go out together for an awkward lunch that was equal parts celebration and mourning. Jennifer remembered how Steve and Lori lingered in their car outside the restaurant: They were calling their daughters to break the news. Though the McIntyre girls had noticed their mother’s subtle decline, they had hoped for a better outcome. It was not to be. Jessica, Steve and Lori’s oldest daughter, immediately made plans to find out if she had the mutation.
Afterward, Lori and Steve stayed with Karla and Matt in Fargo, making the best of their Easter. At one point that weekend, Karla, Gail, and Lori lay in bed and talked about what they had just learned.
“Are you afraid?” Karla asked her sister.
“Not really,” Lori said. It was the truth. She didn’t feel sorry for herself. What she most regretted was the idea that she might never know her grandchildren; she’d always wanted to be a grandmother.
• • •
The second wave of Alzheimer’s preyed on Jamie’s already heightened sense of anxiety. With each positive diagnosis, he worried more; the doctors said there was only a 50 percent chance of each kid inheriting the mutation, but now they were dropping like flies: Brian. Doug. Dean. Lori. At least three of the five kids in his father’s generation—Moe, Pat, and Jerry—had it, as did all three of Pat’s daughters. Fifty percent chance my ass, the DeMoes thought, even though the doctors kept telling them it was pure bad luck. But then again, Karla didn’t have it, and they were already past that 50 percent mark; maybe Jamie would finally catch a break. He didn’t feel any symptoms. Maybe, just maybe, he had dodged a bullet. In 2006, right after Lori’s diagnosis, he decided to get his own blood drawn. His confidence was on an upswing; though he was saddened by his siblings’ bad news, he was so much younger than them—young enough to still feel invincible.
Dean, the brother he’d always emulated most, sat Jamie down for a heart-to-heart talk. He offered one piece of advice that resonated: “Live your life. You have no control over what’s going to happen to you.”
Dean could not have realized, until it happened, the power of knowing his own fate. It was a choice he hadn’t fully appreciated, but afterward, he deeply regretted the knowledge and the change it wrought on his life. He worked hard to ignore it, to be the same man he’d always been. But some of the fallout, like the disease itself, was beyond his reach.
He repeated, like a drumbeat, as much for himself as for Jamie: “Whatever you find out, you gotta be the same person. You’re still the same person.”
• • •
Two months after Lori and Jennifer learned their results, their doctor in Grand Forks, John Martsolf, sat in front of Jamie.
It was strange; his innate pessimism notwithstanding, Jamie was feeling pretty good. Maybe he just knew he was OK, the way Lori had known she wasn’t. He’d been to Dean and Deb’s house for a cookout the day before, and Jamie assumed the same kind of confident, relaxed demeanor that Dean always projected.
When he met with the doctor, he brought a few people with him for support: Karla, his mother, and his current girlfriend.
His carefree façade evaporated in a single moment, when Martsolf confirmed that he’d tested positive for the faulty gene. He was just thirty-five years old. It was the final straw; Gail’s sixth and last child, the fifth of those six to carry the mutation. Only Karla and her children had escaped.
“I really didn’t know what to say then, when they actually sat in that room and told you that you had it,” Jamie said. He was simply shocked.
His girlfriend crumbled. She had a young daughter from a previous relationship and wanted more children; now that would be impossible. Jamie was determined not to pass on the mutation. Unlike his brothers and sisters, who’d already had their kids when they found out they were carriers, he had the option of disinheriting the disease. He was adamant: No kids. The relationship ended.
Though Jamie had been stunned, Karla thought he took the news surprisingly well. Maybe he’d been a worrywart for so long, he’d inadvertently been preparing for this moment his entire life. Secretly, just as she’d been so certain that Dean did not have it, she’d guessed Jamie might, thinking back to his learning struggles in school.
But their mother was another story. Jamie had been her baby. For seventy-one-year-old Gail, each diagnosis was a reminder of loss so profound that some days, she could not get out of bed. It was wreaking havoc on her health, too: she began taking medication for her heart, and she developed tremors in her hands that were so pronounced that Karla took her to a neurologist, who prescribed propranolol. Gail suffered from fibromyalgia, a syndrome that includes chronic physical pain, fatigue, and mood swings. She tried very hard to find reasons to laugh, but there were days when she could no longer summon the courage.
Worried, Karla called her mother almost every day; Matt began to fear for his wife’s mental health. She waited until he wasn’t around so he wouldn’t realize how much time she was spending on the phone. The medication caused Gail to slur her words sometimes to the point where Karla couldn’t understand her. Karla arranged for social services to check in on her.
Even Bill Klunk, who spent every day of his professional life facing the harsh realities of Alzheimer’s disease, found the DeMoes’ situation exceptional.
“The generation of six were tremendously unlucky,” Klunk said of Gail’s children. “Things tend to regress toward the mean.”
• • •
Jamie was alone after he and his girlfriend broke up, but he didn’t have to struggle on his own for long. A few months later, he caught sight of Chelsey Determan across the room at a wedding reception and asked her to dance. It was a moment that would change both their lives.
Chelsey knew Jamie DeMoe by reputation; Tioga was a small town, after all, and both of them had grown up there, albeit fifteen years apart. Jamie’s nephew—Brian’s son, Yancey—was a few years ahead of Chelsey in high school.
A petite blue-eyed blonde who gave off a streetwise air despite her small-town upbringing, Chelsey was a straight shooter, unpretentious; and though she never gushed with the type of artificial sweetness that some women dab on like perfume, she had a core of genuine kindness at the center of her well-guarded heart.
When Jamie first asked her to dance, she was wary of their age difference. But maybe it was his rugged good looks; maybe it was his vulnerability that appealed to that soft spot she had. Whatever the catalyst, soon she was in deeper than she had ever expected.
“It’s the DeMoe charm, that’s the thing,” Chelsey said, smiling ruefully.
They’d been dating less than a year when Chelsey found out she was pregnant. She knew, as did everyone in Tioga, that some of Jamie’s family members had Alzhei
mer’s disease. But she didn’t know that they had acquired it through a genetic mutation, or how dominant it was. And she didn’t know Jamie himself carried it.
Live your life. You have no control over what’s going to happen to you.
When she broke the news about the pregnancy, Jamie broke the news about his diagnosis.
“I remember, he brought me a rose in a little jar,” she said. “It was really hard for him, I think, to tell me. I think he thought I was going to leave him, or maybe I wouldn’t want to have the baby.”
The full impact of the news would take years to absorb, but Chelsey Determan’s resolve was cast on that day, in that moment, and it never wavered.
“He said, ‘Does it bother you?’
“And I said, ‘I love you, and it doesn’t really matter,’ ” she recalled, her eyes wet with tears.
• • •
The DeMoe family did not, initially, take Chelsey that seriously. Jamie had gone through a lot of girlfriends, so they had no idea when he would actually settle down. It embarrasses Karla, in particular, to think about how she treated twenty-one-year-old Chelsey, as though she were just another of Jamie’s soon-to-be-exes, easily discarded and soon forgotten.
It was not in Chelsey’s nature to fight with other people who loved Jamie; she would prove her dedication quietly, in a thousand small trials that would have sent another woman packing—for example, when Brian and Doug became incontinent from Alzheimer’s disease, she didn’t hesitate to help with the cleanup. She endured the small indignities.
When she and Jamie moved in together—like Brian and Doug, into a house not far from Gail’s—she opened a day care in their house, earning some money while still being available to take care of her own baby.
Their daughter, Savannah, was born on October 16, 2007. Her timing was impeccable; she brought much-needed joy to her grandma Gail. Despite the mutation’s looming threat, Savannah represented faith in the future, that the simple joys the rest of the world took for granted—a grandchild’s innocent face—would live on, even if Gail’s own children did not.
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