Taking an Alzheimer's diagnosis 'a mile at a time'

Mark Macy is a fighter.

The Evergreen resident always has been driven to succeed as an attorney, an endurance athlete and a devoted family man. Now at age 69, he continues his drive to succeed in his battle against Alzheimer’s disease.

He believes that his green diet, exercise and positive attitude will help him do what many others haven’t: beat the disease.

“Some people think I’m nuts,” said Macy, 69, who everyone calls Mace. “I believe I can beat it. If I don’t, I’m still a happy guy.”

Mace has lived in Evergreen since 1980 with Pam, his high school sweetheart and wife of 46 years. Mace still runs regularly, sometimes on the family’s six-acre property and sometimes with friends who help keep him steady and on track.

When Mace got his diagnosis in 2018 — considered early-onset Alzheimer’s disease because he was 64 — the family decided it was not going to hide from the disease, friends or the community.

That’s why son Travis Macy, a 2001 Evergreen High School graduate and former EHS English teacher, decided to write a book with Mace about their journey called “A Mile at a Time: A father and son’s inspiring Alzheimer’s journey of love, adventure and hope.”

Travis and Mace travel around the country speaking about Alzheimer’s disease, and they will be at the Alzheimer’s Foundation of America’s Alzheimer’s & Caregiving Educational Conference on May 17. The family also will be at the Evergreen Taphouse for a book signing that evening.

“To his credit, (Mace) decided he was not going to be ashamed of Alzheimer’s and not going to hide it,” Travis said. “He’s continued to do that, and honestly it’s turned out that his treatment has been communicating with other Alzheimer’s families.”

Dr. Allison Reiss with the Alzheimer’s Foundation of America’s Medical, Scientific and Memory Screening Advisory Board said Alzheimer’s disease is not always obvious, especially at first.

“We all get more forgetful, and sometimes we get so much clutter in our brains that we may do something wrong or different like misplace our keys or forget something on the chore list,” she explained.

The line between forgetfulness and an Alzheimer’s disease diagnosis would be when someone suddenly doesn’t know where they are, Reiss said. They wander off or try to go someplace from the past.

Another big one, she added, is not getting words right.

“Not just mispronouncing,” said Reiss, who is an associate professor of medicine at the NYU Long Island School of Medicine, “but when you can’t find the words or when you forget something basic like your own phone number. After a point, it becomes clear that it cannot be attributed to a normal situation.”

Before the diagnosis

Mace spent his life as a hard-working trial attorney, forsaking sleep to do it all – spending time with his family while working long hours at his practice. He began competing in adventure racing in the 1980s when the grueling sport was forming and competed in all eight Eco-Challenge races from 1995 to 2002.

Travis, following in his dad’s footsteps, became an accomplished ultra-athlete, traveling around the world to race professionally. Prior to Mace’s diagnosis, the father and son did hundreds of the same races, mostly solo events in which both entered.

“We did lots of the same adventure races in which Dad competed on a team with friends and I raced for the win with a competitive team,” Travis explained.

In 2019, a year after Mace’s diagnosis, the duo traveled to Fiji to race in the revived Eco-Challenge, a 10-day, 417-mile race with 280 competitors who traversed mountains, rivers, swamps and oceans, the first time the two had competed on the same team. While the team did not finish, Travis considered it a win because endurance racing doesn’t have a category for competitors with Alzheimer’s disease.

The beginning

Mace said leading up to his diagnosis, he noticed he wasn’t talking properly, making his trial-attorney career more difficult.

“Word finding had become more difficult for him,” wife Pam said, “but not to where anyone would notice.”

Mace saw a neurologist, and a brain MRI came back normal, so they thought he was in the clear. But the symptoms kept persisting: things like Mace couldn’t read a map, and he suddenly had difficulty pulling a car into a parking space.

But concern about Mace’s health had to wait while Pam received a kidney transplant. Mace wasn’t a match, but he donated one anyway to someone else who needed one. Donors must be in excellent health to donate.

When Mace was diagnosed with Alzheimer’s disease, the doctor told him to start getting his affairs in order immediately and to take a family trip soon.

“We weren’t surprised by the diagnosis,” Pam said, “but we were still shocked. He is the healthiest person I know. I have had the health issues, so we thought I’d be the first to go. (The diagnosis) was reorienting as we think about the future.”

Travis added: “When the diagnosis came, it was not a surprise, but it hit me like a ton of bricks. It was really tough. For me, initially, it was a mad scramble to try to find a cure and treatments. Immediately, we have to figure out finances, putting things into a trust, maybe we need to build a house on my parents’ property so we can take care of them. In hindsight, I was trying to control something uncontrollable.”

Since his diagnosis nearly five years ago, Mace is losing more cognitive abilities: he no longer drives a car, he sometimes has difficulty reading and writing and his balance isn’t what it once was.

In addition to his wife and son, he has strong support from his two daughters, Katelyn Macy Sandoval of Denver and Donavahn Macy of Tampa, Florida, plus five grandchildren to play with.

Reiss said the degree of stress and sadness for both the person with the Alzheimer’s diagnosis and that person’s loved ones can be overwhelming.

“The outcome is inevitable,” she said. “This disease only goes in one direction, and the final pathway is grim. Living with this person you love and watching the loss of that is just horrendous.”

Plus caregivers, who want to take care of their loved one themselves, face stress and depression because they become fixated on caring for the other person, not themselves. She said caregivers must take care of themselves and lean on family members and friends for support.

Coping with Alzheimer’s

Travis said Mace has had sayings during races and life. In fact, Mace has a tattoo that says “It’s all good training” on his forearm because he believes there’s value in going through something difficult. That’s Mace’s attitude toward Alzheimer’s disease.

The disease’s toll can be seen in the races that father and son have undertaken as time goes by.   They ran the Leadville 50-mile race in 2021, the Leadville Marathon in 2022, and they are planning to do the Leadville 10K this year.

“I have realized that winning doesn’t matter; I just want to run with my dad,” Travis explained.

The family knows that Mace’s health continues to deteriorate, so they are planning for the future while still trying to be present in the here and now.

Mace wants people to know that people with Alzheimer’s disease are like everyone else, and they go on with life, though a little differently.

“Just love the person (with Alzheimer’s),” Pam said. “They are the same person. As things change, we will have to change. It’s not going to get easier.”

Pam, already patient with an optimistic outlook, said she’s learned that it’s OK to ask for help.

Helping others

Pam said it was important for them to reach out to others on the Alzheimer’s disease journey to share information and to connect for support.

“Why stay home and hide?” she asked.

Travis said connecting with others on the same path has become a new mission, and a big goal of the book is to make a difference and help people. Secondarily, it gave father and son something to do together.

“We are not Alzheimer’s experts,” Travis said, “but we are sharing our story.”

Mace continues to find happiness in his life, and Travis attributes that “to my mom being incredibly supportive and energetic.”

“What is important to know,” Mace said, “is you will still be OK even after the diagnosis. I’m still an athlete and as good as I ever was. I’m perfectly happy. I have a great family.”