The Inheritance

by Niki Kapsambelis

  • • •

  Though much mention was made during the congressional subcommittee hearing of the sacrifices made by the volunteers who donated their tissue samples to the NIH, none of those volunteers was called to testify. One, who joined the research because his own father had died with Alzheimer’s, did speak to a Los Angeles Times reporter after Sunderland’s hearing, complaining that all the doctor got was a “slap on the wrist.” Furthermore, he wanted the NIH to return the spinal fluid he had donated.

  But others, even those who had worked closely with Sunderland, knew nothing of his troubles until after the fact.

  Julie Noonan Lawson was deeply saddened by his conviction, as well as the implication that he enriched himself at his patients’ expense. That wasn’t the man with whom she had worked for four years, who had been so compassionate and careful in his treatment of the Noonan siblings.

  “His ego didn’t seem to be the thing that was leading him in his research. It was a cure that seemed to be leading him,” Lawson said.

  “He was just very human, very empathetic,” she added. No other researchers had taken the Noonan family as seriously as Sunderland did, or offered much beyond the cognitive tests they had taken so many times that even the siblings stricken with Alzheimer’s had memorized them. “I felt like he was a very good scientist, and he was pursuing areas that nobody else was pursuing.”

  The knowledge that he took money from Pfizer to hawk Aricept neither surprised nor offended her; in fact, he had been promoting Aricept when she first met him at an Alzheimer’s conference. To Lawson, the NIH scientists were paid so little compared to their private-sector counterparts that such moonlighting almost seemed inevitable. (At the time of the investigation, a scientist in Sunderland’s position would have been earning between $150,000 and $200,000 per year, according to Thomas Insel.)

  But what bothered Lawson the most was that Trey Sunderland was no longer pursuing a treatment for Alzheimer’s. In fact, the notion of that loss choked her up: the wasted years, the wasted opportunity.

  When Sunderland lost his job, NIMH canceled his study. The information and samples he collected were warehoused, and over time, some of them were lost. Eventually, the study would resume, but with far less funding. Marilyn Albert, a neuroscientist from Johns Hopkins who had once praised Sunderland’s work as being ahead of its time, finally took over four years later.

  Albert was awarded $1.5 million per year for five years, but she was told specifically to limit the study to cognitive and clinical testing, eliminating the MRI scans and the collection of any additional spinal fluid. When the economy softened, her funding was cut by about $300,000.

  In return, she received roughly fifty boxes of paper, a thousand electronic files, and five freezers full of specimens, along with several disks of MRI scans and a list of participants from their last point of contact. Of the roughly 350 volunteers that Sunderland had enrolled, 200 immediately said they would return to continue the study. With a little more outreach, including an agreement to visit people in their homes, Albert’s group was able to get that number up to 300. They worked painstakingly to reassemble the abandoned study’s information, which did not come with any kind of documentation or road map to help them.

  The Noonans remain involved in several tendrils of Alzheimer’s science, including Bill Klunk’s study at the University of Pittsburgh, using the PiB compound he’d developed with Chet Mathis. He traced the disease through a series of clinical tests, comparing those results to the amyloid buildup he was able to see in brain scans. Eventually, he hoped his subjects might be able to test experimental treatments for clearing the amyloid.

  Karla, who was devastated by the abrupt end to the Sunderland study that she thought would finally help her family, learned about Klunk’s study from Julie and reached out to him.

  • • •

  One of the most poignant losses in the Sunderland affair was uncovered when Julie decided, on the advice of a doctor she’d consulted in Boston, to arrange for her family’s brain tissue to be permanently housed in the same location for the sake of continuity.

  But when she started inquiring about the whereabouts of the brains that her family had donated to the NIH, she made a horrifying discovery: Two of them were missing. They were the remains of her sisters Kathi and Maureen, who had died the same day on separate sides of the country.

  Nobody could explain what had happened to them.

  Marilyn Albert tried to help. She doubled back to the NIH, but the records were so incomplete that she wasn’t able to get a definitive answer. One rumor said one of the brains went to a lab at the NIH, where scientists may have purged the freezer. But since the lab’s records were incomplete, Albert couldn’t confirm that. Another tip suggested that a brain had been sent to another institution, but when she tried to track it down, the investigator in charge of that research had retired, and apparently vanished in retirement, a similar situation to the one the DeMoes had encountered when they were unable to find June White.

  Documentation was important to Marilyn Albert. Years earlier, she had been in a serious car accident that taught her a sobering lesson: One day, quite suddenly, you might not be around to explain your work to people. So for more than twenty years, she has been careful to record her research, creating a continuity that could survive an abrupt transition, offering a road map to a future scientist who might want to use that hard-won knowledge to better understand a problem.

  When she spoke with people who participated in the study, Albert was always careful to express her gratitude that they were willing to donate their time and bodies in the search for a solution.

  “That’s the only way we’re going to get the answers to these questions,” she said.

  Fifteen

  FAVORITE SON

  WHEN THE INITIAL shock of Dean’s diagnosis had subsided, Karla tried hard not to worry about him. Unlike Brian and Doug, Dean had a wife to keep an eye on his affairs. Karla was willing to help, of course, but he was still several years away from the point where that might be necessary. She had more immediate problems to think about, particularly with Brian, whose deterioration was beginning to show.

  Debbie Thompson, Brian’s high-school girlfriend, had long since married and settled in Bismarck, where she worked as a medical technician. She’d seen and spoken with the DeMoes periodically through the years, although when she attended her thirtieth high-school reunion in 2004, she was surprised to see Gail there. But that was vintage Gail. Rather than being embarrassed, her children loved her eccentricities, as did Debbie, who remembered well the DeMoe sense of humor.

  When Gail broke the news to Debbie about Brian’s diagnosis, her stomach dropped. This man, still strong in middle age, who had teased and laughed and loved her in her youth, was nearly at the end of his life. She could hardly believe it.

  At Gail’s insistence, Debbie took one last turn on the dance floor with her first love.

  She lingered late that night, reminiscing with Brian, and stayed in touch with him after that. On a subsequent visit back to Tioga, she stopped by the DeMoes’ house, and Brian gave her a gift of earrings, a bracelet, and flowers.

  “I still have them,” Debbie said. “I’ll keep them forever.”

  • • •

  Brian was living in a trailer on the outskirts of Tioga when Karla and Gail began to think that maybe it was time to bring him closer to the center of town. With his former wife, Christy, long gone, they wanted to keep an eye on him as his memory and thought processing deteriorated; Alzheimer’s patients often wander and go missing, or people take advantage of them.

  They found him a little one-bedroom house just down the street from Doug’s and a few blocks from Gail’s. He moved in, bringing a stray cat that he’d adopted and named Missy, until he found out it was a male. Then he called it Mr. Missy. Brian’s daughter, Kassie, found it ironic that her father, who had so hated cats throughout her childhood, was mellowing under the shadow of Alzheimer’s to the point
where he doted on his kitty. The first night he spent in his new house, he climbed onto the roof to rescue the cat, only to fall and break his leg in the process.

  For a few years, Brian got by. In the aftermath of Sunderland’s firing, Karla was determined to steer her family into another research venue. She hoped Bill Klunk’s work at the University of Pittsburgh would fill that void. He ran similar tests to Sunderland’s study, but he also took images of the family’s brains to examine the amyloid content and compare it against the other findings.

  It would prove to be a most fortuitous partnership. In Klunk, the DeMoe family finally found their champion: a man who cared about them as human beings as much as he cared about the scientific knowledge he could gain from their unusual genes. Gail saw Bill Klunk as a man who would watch over her family in ways that she couldn’t; his entire staff treated them like old friends. One by one, the DeMoe siblings trekked to Pittsburgh each year, undergoing a battery of tests and brain scans so scientists could see how the disease was progressing both biologically, inside their brains, and clinically, in their behavior.

  Although the study paid for their travel costs and provided a meal stipend and small honorarium, each study subject had to schedule at least three days off from work and convince a partner to accompany him or her—a spouse if the subject had one, or a close friend or family member who could objectively answer questions about the subject’s day-to-day level of functioning. The study partner also had to schedule time off, and in some cases, they had to handle the rigors of traveling with an Alzheimer’s patient. In more advanced cases of dementia, travel can be overwhelming and can trigger wandering.

  Gail frequently traveled with her offspring, and Klunk and his staff came to know each of them intimately. When their children grew into adulthood, most of them joined the study, too, as did the Wisconsin branch of the family. Pat and Dawn were too far advanced in their disease to participate, but Dawn’s sisters, Robin and Colleen, did enroll, as did her two grown daughters, Leah and Alayna. Karla tried to interest the Oklahoma cousins—Sharon and Jerry’s two daughters—but initially, they decided to hold off.

  Though the tests were grueling, Klunk and his group worked hard to make it as palatable as possible for everyone. The subjects were encouraged to sightsee, attend ball games, explore the city. When the workday was over, the DeMoes and the doctor often ate dinner together. Klunk did this with many of the patients in his study, with one exception: If they chose not to know their genetic status, he politely declined dinner, fearing he might accidentally tip someone off to what he knew.

  To him, the DeMoes were more than just research subjects; they were people he admired for their courage and their selflessness, and their contributions were allowing science an unprecedented window into a disease that had baffled them for more than a century. He would come to know three generations of DeMoes; he would witness their losses, their triumphs, their deepest secrets and most paralyzing fears. He was humbled by their sacrifices and their trust in him, especially after their earlier disappointments; he would become their touchstone, a lifeline as they were battered by the relentlessness of the disease. Unlike anyone else they had met in the research world, he always made himself available, always returned their calls.

  “There’s only one family like the DeMoes,” Klunk said. “They’re the salt of the earth.”

  • • •

  All told, Brian made it to Pittsburgh twice to participate in Klunk’s study before the disease claimed too much of his brain to make travel possible. His small world grew smaller; he walked across the street from his little house to the Skol Bar, which was populated and run by his friends. They made sure nobody stole from him; it would have been easy to take his money.

  At the local drive-in, family friend Kim Johnston worked behind the counter and waited on Brian when he showed up for lunch. Knowing that too many questions flustered him, she simply placed his standing order for a Philly steak wrap without asking and took the correct amount of money from Brian’s billfold when he silently handed it over to her. Then he’d settle into a table across from her and wait for his food, saying, “Ayup,” like he was relaxing after a particularly hard day at work.

  Brian had always been generous to a fault; now he bought small trinkets to give his mother. They were all he could afford, but he still made the gesture to show her his affection. He walked to her house, often woefully underdressed for the harsh weather, loping along on his bum leg that had never quite healed right after the fall from the roof. On one memorable occasion, Kim Johnston taught him to ride a three-wheeled bike that someone had given the family, thinking it would help him get to Gail’s more easily.

  At five-foot-two, Kim struggled to hold the small bike while Brian moved the pedals, forgetting to coordinate each push.

  “OK, now, now, now!” she yelled, as Brian started to get the hang of it.

  “I can’t!” he shouted.

  “Can’t never could,” said Kim, borrowing one of Gail’s favorite expressions, and Brian pedaled faster.

  They wobbled down the street, past an oil company office, where Kim saw workers sticking their heads out the window, fascinated at the spectacle of a burly man in a trucker cap shakily pedaling a bike several sizes too small for him while a short woman cheered him on like an exultant mother. By the time they reached Gail’s house, Gail was outside, laughing so hard she had to cross her legs to avoid wetting her pants.

  “That was probably one of the last times that I thought part of him was still in there,” Kim said.

  Now that he was home all the time, he would spend hours playing the practical joke that had been a DeMoe family tradition for decades: canning cars. The trick never got old. As his disease progressed, it simply got more hilarious, the way repeated knock-knock jokes gain comedic momentum for small children. He canned cars so often that the people of Tioga came to expect it when driving past Gail’s house; a few times, he forgot to let go of the fishing line and nearly lost a finger.

  And sometimes, though he loved her, Brian was uncharacteristically cruel to his mother. When Brian’s mood swung low, he unleashed his temper on Gail, much the way his father once had. Though she knew by now that the viciousness was Alzheimer’s, it was impossible for Gail not to take the abuse personally.

  Occasionally, she brought him with her when she went across town to volunteer at the nursing home attached to the Tioga Medical Center. Sometimes he slipped outside to smoke a cigarette while she was doing patients’ nails. That worried her because she knew he was a wanderer, and the nursing home wasn’t a locked facility. What would happen to him when he was no longer capable of living on his own?

  The answer came soon enough, in February 2008. From the other side of the state, Karla had been monitoring her brother’s living situation. She called the woman who tended the Skol Bar, and learned that Brian was sometimes emerging from the bar’s restroom without pulling up his underwear. He was becoming incontinent, too—his cleaning lady reported that she was finding more accidents in his home bathroom. And Karla knew that the ugly incidents with Gail were escalating.

  Since Brian was no longer married, his children were scattered, and Dean had been diagnosed with the mutation, Karla alone held power of attorney over his affairs. It was up to her to decide what to do next. After consulting with Brian’s children and some of his friends, she made the first of what would be many difficult choices. She decided her big brother would enter a memory care facility—a step below a nursing home, but one that specialized in people with dementia and was locked to safeguard against wandering. It was in Minot, eighty miles away.

  Karla told Lori and a few other family members and close friends about her plan, but made sure to keep the news from Gail. No matter how hard it was for her to relive the terror and pain of her final years living with Moe, Gail could never have agreed to send her favorite son away.

  The morning they decided to take him, Lori and Karla—who were staying overnight at Gail’s, ostensibly for an
ordinary visit—met in the kitchen with Doug’s daughter, Jennifer, as well as Kim Johnston. Gail woke to the sound of the gathering and wandered down the hall into the kitchen. When they told her what they were doing, she began to cry.

  “Mom, I just know you would never want to let him go,” Karla said gently, reassuring her that it was the only choice they could make. Hard as it was, Karla accepted full responsibility for that decision, hoping to spare her mother some of the pain. Let Brian hate her; she could recover. Gail never would.

  “It was awful,” Karla said. “I didn’t want her to feel that way.”

  The decision to move Brian to a locked facility—however pleasant the accommodations were, however necessary the move—would be just the first of many such difficult turning points for Karla. She felt as though she was betraying the closeness her mother had tried to instill in her her entire life. With each decision, a limb of her family tree fell to her feet, her peace of mind eroding just a little more.

  • • •

  When the group drove by Brian’s house, he was taking out the garbage.

  “Hey, you wanna go to Minot?” Karla asked him. They were headed out on a shopping excursion, she explained.

  “Hey, yeah, let’s go!” Brian said, and hopped in.

  While Karla, Lori, and Jamie’s girlfriend took Brian to Target and then to a movie, Doug’s daughter, Jennifer, and their friend Kim Johnston went to his house and collected his belongings. They brought them to the memory care center; Brian’s son, Yancey, later got rid of the cat.

  After the movie, Karla drove past the facility, pretending it was the first time she’d ever seen it.

  “That’s an Alzheimer’s research place!” she told Brian. “We should stop and check it out.”