An Endurance Athlete with Alzheimer's Finishes 'World's

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EXERCISE FEBRUARY/MARCH 2021 BY JOHN HANC An Endurance Athlete with Alzheimer’s Finishes ‘World’s Toughest Race’ Mark Macy inspires the world aer a diagnosis of young-onset Alzheimer's disease. Mark and Travis Macy have always been a team. They bring that same partnership to managing Mark's Alzheimer's disease. Photo Courtesy The Macy Family

On October 12, 2018, Mark Macy scribbled these words in an old spiral notebook: My name is Mark Macy, I am 56 years old and today I was diagnosed with Alzheimer's disease. My doctor told me to get my affairs in order and not spend time worrying about this diagnosis. He urged me to take vacations instead, maybe go on a cruise with my wife Pammy. I told him the diagnosis was bull. Macy subsequently wrote: Then my wife reminded me that I am 65 not 56, so maybe the diagnosis isn't completely bull.

Macy, whom everyone calls “Mace,” is a retired attorney, grandfather, and ultra- endurance athlete in Evergreen, CO, who has spent the past 30 years competing in races of mind-boggling distance, including five 100-mile events. He's also participated in ultra-distance bicycle and snowshoe races. He's not one to give up when things get tough, as a later entry in the notebook attests: I finished day one of my Alzheimer's diagnosis with a significant decision: I didn't cause this disease. I'm not embarrassed to be one of many who has it. Instead of hiding from it, I'm going to share my story with anyone who wants to listen. My family and I are dedicated to fighting this horrible disease that kills people all over the world.

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Shortly after his diagnosis, Mace found the perfect opportunity to share his story. He heard that Mark Burnett—the producer of Survivor and The Apprentice, among other reality shows—wanted to reboot the adventure racing series he developed in the 1990s. World's Toughest Race: Eco-Challenge would involve a 400-mile-long competition in Fiji. Mace, now 67, is one of the few people who ﬁnished all eight of Burnett's Eco-Challenges held from 1995 to 2002.

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Mace and his son, Travis—along with two longtime friends and seasoned adventure racers, Danelle Ballengee and Shane Sigle—decided to participate to show the world what someone with Alzheimer's could do. The four were welcomed by Eco- Challenge organizers as “Team Endure.” An elite athlete in his own right, Travis, 37, could have done the race with a more competitive team, but he wanted to support his dad and ensure his safety while also embodying Mace's approach to his illness.

“We want to be active in confronting this disease as a family,” says Travis, speaking on behalf of his mother and two sisters, Katelyn and Donavahn. “There's been cognitive decline since his diagnosis, but we're emphasizing what Mace can do, not dwelling on his limits. And we hope that's a message that will resonate with other families going through this.”

Pam and Travis suspected trouble about ﬁve years before Mace was diagnosed. He couldn't remember names or how to ﬁll out forms or how to insert a key into a lock. One time he mistakenly gave an $85 tip to a pizza deliveryman on a $15 order. The man called Pam to make sure the tip wasn't a mistake; it was, but Pam thanked him and told him to keep it. As other symptoms appeared, Travis and Pam urged Mace to get evaluated.

Mace was one month shy of 65 when he was diagnosed with young-onset Alzheimer's, which is deﬁned as occurring before the age of 65. Young-onset accounts for about 5 percent of the 5.8 million Americans with the disease, according to the Alzheimer's Association. Progression of the disease in these cases is similar to that in older people with Alzheimer's, starting with memory and processing trouble and developing into behavioral problems and difﬁculty with daily activities and functions.

Team Endure's experience was a powerful story line on World's Toughest Race, a 10- part series that premiered August 14, 2020, on Amazon Prime and featured 66 teams from 30 countries paddling, trekking, biking, and climbing through Fiji's jungles, rivers, and mountains. Fans of endurance sports weren't the only ones impressed. “From an advocacy standpoint for Alzheimer's, I think it's amazing,” says Eric McDade, DO, associate professor of neurology at Washington University in St. Louis, citing in particular some of the adjustments the Macys made. For example, while many Eco-Challengers pushed on through the night, getting little or no sleep, in order to stay competitive, Team Endure made sure to bed down, as Travis knew his father could become disoriented in the darkness and needed the rest. “They recognized that in taking on this challenge, some things needed to be changed or anticipated, and they adapted appropriately,” says Dr. McDade. “That's key in Alzheimer's.”

Despite such precautions, Mace struggled at times. One morning, he was distraught because he couldn't remember how to put on his race jersey. His poor visual-spatial reckoning—common in those with Alzheimer's disease, says Dr. McDade—meant he had trouble holding his shirt upside down and ﬁguring out which holes to place his arms in and which side would face forward. He also had to be roped to a teammate as they ascended and descended steep hills, not because he wasn't strong enough but because he had trouble judging the pitch and shape of the hill and could have fallen.

Other times, though, he “was strong as a Sherpa,” says Travis. On the second day of competition, their watercraft—a traditional Fijian outrigger sailing canoe called a camakau—caught a sudden gust of wind and flipped over in the middle of the river. “In a split second we were underwater,” recalls Travis. “As I'm swallowing salt water and disoriented, I feel a hand on my personal flotation device, and I'm pulled right out of the water.” It was Mace who managed to hang on to the overturned canoe with one arm and pull his son up with the other. “You'd think the guy with Alzheimer's would be the one who would get confused,” Travis says. “But Dad stayed cool, reacted instinctively, and fished me out of the water.”

Mace's good humor and positive attitude endeared him to many.

The Macys forded streams and biked mountain trails during the World’s Toughest Race: Eco-Challenge Fiji.

One viewer wrote that his father had spent most of his time lying on the couch since his Alzheimer's diagnosis. “But when [the father] watched Mace in the Eco- Challenge, he got up and got back on his bike and started riding again,” Pam says.

Since the race—which took place in September 2019 and can still be streamed on Amazon Prime—Mace has shown “a gradual but consistent decline, some days more than others,” says Travis. He's still articulate, but he has trouble managing daily life. He can't be trusted to use a stove and has no concept of setting a schedule for the day. “He deﬁnitely could not live alone now,” Travis says.

Pushing Positivity What Mace can do is exercise. Every day he runs or bikes, a routine his family believes has slowed his decline. Instead of biking trails in the nearby mountains as he used to, Mace rides the streets of his neighborhood. He carries a phone when he bikes alone, and on his six-mile runs Travis or Mace's adventure-racing buddy Marshall Ulrich (an ultra-distance runner) goes with him. “Even with his mask on, people recognize him on the trail because they've seen the Eco-Challenge,” says Ulrich, who also lives in Evergreen. “We'll stop and they'll say, ‘You're the guy from the show, right?’ Sometimes they know his name. Regardless, he'll change the subject and put the focus on them. ‘What are you doing out here? Are you training for a race?’ That's who he is.”

Ulrich, 69, can sense his friend's cognitive decline, but he says that Mace's selﬂessness—his desire to help others—is still a vital force. “He forgets a lot of things,” says Ulrich, his voice cracking. “But he never forgets to ask me how I'm doing.”

Encouraging others with Alzheimer's keeps Mace busy on the podcast circuit, where he and Travis talk about their experience in Fiji and Mace's past exploits as an ultra-endurance athlete as well as about his disease and how he and the family are dealing with it. They've been guests on numerous programs, hosted by everyone from former Tour de France cyclist Tyler Hamilton to Joe De Sena, founder of the popular Spartan Race series. The Macys also are writing a book, one that will include some of Mace's diary entries—which he hopes will underscore his message to his “Alzheimer's brothers and sisters” to stay positive and keep moving forward, literally.

“I look at my situation this way,” Mace says. “Some of the best minds in the world are trying to ﬁnd a way to minimize dementia's effects. Maybe I will be lucky enough to be the beneﬁciary of their discoveries when they arrive. Maybe not. Either way, I'm staying as positive as I can. I'm living my life as best I can, as productively as I can, while I can.”

Move Away From Dementia Physical activity—whether walking, cycling, or jogging—is now recognized by neurologists as one of the best things for someone with Alzheimer's disease. And it can be effective, for those with Alzheimer's and anyone else, even when done modestly. You don't need to run marathons up mountains, as ultra-endurance competitor Mark “Mace” Macy, who was diagnosed with young-onset Bike by Sakchai Ruankam from the Noun Project Alzheimer's disease, has done throughout his adult life.

“Every little bit helps,” says Sudha Seshadri, MD, FAAN, director of the Glenn Biggs Institute for Alzheimer's and Neurodegenerative Diseases at the University of Texas Health Science Center at San Antonio. “Sedentary time is bad. Whatever physical activity you can do, you should do. There seems to be no limit for the brain.”

There's no downside to exercise, as long as it's done in a responsible way and with medical consultation, Dr. Seshadri adds. “At the very least, we know that physical activity helps to improve blood pressure, lower weight, and manage cholesterol— all of which reduce the risk of heart disease, stroke, and perhaps, as we're learning, dementia.”

“What I typically recommend as a goal for my patients with Alzheimer's is brisk walking for 20 to 30 minutes ﬁve days a week,” says Eric McDade, DO, associate professor of neurology at Washington University in St. Louis. In a study published in Neurology last July, Dr. Seshadri and colleagues examined cardiovascular health data and dementia screenings from 1,211 people who are the offspring of the participants in the original Framingham Heart Study (which has followed residents of Framingham, MA, for nearly 75 years to investigate the development of heart disease) to look for connections between lifestyle and brain health. Participants were scored according to the American Heart Association's seven measures of heart health, which include physical activity, blood pressure, and cholesterol levels. Results showed that participants who had more positive scores were 59 percent less likely to develop dementia than participants with more negative scores.

Based on these ﬁndings, Dr. Seshadri says, “we believe exercise has a number of effects on the body and the brain that would build resilience and likely delay the cognitive decline as well as the onset of clinical dementia.”

Other researchers have examined how and why exercise might provide such beneﬁts. A 2018 study published in Science found that exercise in mice stimulated the growth of new nerve cells in the brain, as well as a protein called brain-derived neurotrophic factor (BDNF). “The hypothesis is that the BDNF helps the new neurons thrive and survive in humans as well as mice,” says lead author Rudolph E. Tanzi, PhD, director of the genetics and aging research unit, vice chair of the neurology department, and co-director of the Henry and Allison McCance Center for Brain Health at Massachusetts General Hospital. “It's like Miracle-Gro for newly born neurons,” he says.

“We know from a number of studies that regular physical activity may be one of the most important things you can do to promote brain health,” says Marwan Sabbagh, MD, FAAN, director of Cleveland Clinic's Lou Ruvo Center for Brain Health in Las Vegas. And yet, he adds, it's also a hard sell among his patients and their families. “I am still surprised by how deeply ingrained sedentary behavior is in many of my patients' lives,” he says. “When I encourage them to start walking or to try yoga or a senior aerobics class, many roll their eyes.”

The message from the neurology community? Stop rolling those eyes and start moving.