“It feels like walking into a closet you haven’t been in in a while, looking for something you know is there, but you don’t know where. You just give up. It’s the giving up part that’s hard.”

• ­Marc Pierrat, 59, describing life with FTD

Marc’s wife Julia Pierrat, an AFTD Ambassador since 2022, described her journey with her husband’s behavioral variant FTD to the Los Angeles Times in an article published on September 7.

She got her first warning sign in late 2018. After a minor car accident, Marc inexplicably lashed out at Julia when she arrived to help—behavior completely out of character for him. Like many FTD families, the Pierrats initially dismissed these episodes as stress or normal midlife changes.

By 2020, however, Marc’s personality had shifted dramatically. The harsh aspects of his character ballooned while his kindness and generosity faded. He accused family members of theft, flew into rages over minor neighbor requests, and became increasingly combative at work. His professional performance, initially at least, remained intact.

“At the beginning of the disease nobody knew he had any issue, other than he seemed like a total jerk,” Julia recalled. This pattern reflects a cruel reality of behavioral variant FTD: the disease attacks the brain regions that govern social behavior, emotional regulation, and impulse control—essentially everything needed to relate to others.

As Marc’s behavior deteriorated, Julia insisted that he see doctors. The diagnostic process took over a year of neurologist visits, scans, and cognitive testing. Meanwhile, his life unraveled. The respected project manager was put on notice at work for combative emails and organizational failures. At home, he botched routine repairs, missed appointments, and stopped basic self-care.

On July 18, 2022, a neurologist delivered the FTD diagnosis, handing them only a generic pamphlet. “It was diagnose and adios,” Julia said. In the car afterward, as Julia sobbed, Marc turned to her with clarity: “I’m f—.”

Turning Pain into Purpose
Faced with no treatment plan, Julia became Marc’s advocate. She researched relentlessly, found support groups, organized their legal affairs, and enrolled them in observational research studies. Through AFTD, she discovered her lifeline: a community of caregivers and advocates working to advance FTD research and awareness.

In her role as an AFTD ambassador, she even joined Emma Heming Willis and other advocates at the California state capitol to meet with lawmakers. “All of it is a way of finding purpose in pain,” she explains.

Living with FTD Today
The couple now follows a structured routine: Marc attends adult daycare five days weekly, takes multiple naps (fatigue is common in FTD), and spends quiet time with Julia, walking in their neighborhood or visiting familiar places. The early hostility has faded, replaced by tender conversations and preserved connection.

“The love that we have is still completely there,” Julia reflects. “When you’re married to someone for so long, you almost have your own language. He and I still have that.”

FTD typically progresses over five to seven years, eventually affecting language, self-care, and basic bodily functions. Yet Marc and Julia continue to find reasons to keep going and ways to love each other. Their participation in research studies contributes to future therapies that may help other families facing this diagnosis.

This article is also available via Yahoo News.

For FTD support and resources, contact the Association for Frontotemporal Degeneration at theaftd.org or call (866) 507-7222. Learn more about the ways you can help drive FTD research, including participating in research.