"I lost me." This poignant statement captures the intense struggle Marc Pierrat faces after being diagnosed with frontotemporal dementia (FTD). Once a mechanical engineer who thrived on complexity—maintaining both intricate systems at work and a meticulously organized home—Marc now grapples with his identity as his mind unwinds.

At 59, Marc's vibrant life has turned into a chaotic jumble of thoughts and emotions, largely due to a disease that has left him feeling lost. His wife, Julia, 58, now takes on the monumental task of caring for him, guiding him through everyday activities like meals and naptimes, filling in the gaps when he struggles to find words.

The experience of living with FTD is often indescribable for patients, who may not possess the insight or language to articulate their suffering. A neurologist referred to it as "the most challenging of neurological diseases," illustrating the complexities involved.

Despite the obscurity of FTD, thousands in the U.S. today contend with this condition—each story unique. For Marc, the disease has surprisingly preserved some capabilities, enabling him to reflect on his life with alarming clarity, moments captured by Julia to cherish their unexpected journey.

"It feels like walking into a closet you haven’t been in for ages, searching for something familiar but just out of reach," Marc explained. "Eventually, you give up, and that’s the hardest part."

Diagnosed after a peculiar outburst in late 2018, Marc’s condition started as forgetfulness and hostility, traits foreign to his character. Julia, sensing something was wrong, urged him to seek medical help, prompting extensive tests that revealed the devastating truth: FTD.

Frontotemporal dementia affects the brain’s frontal or temporal lobes, which are critical for personality, behavior, and language. As abnormal proteins accumulate, neurons are damaged, leading to a decline in everyday functions and relationships.

It's important to note that FTD presents itself between the ages of 45 and 60 and often mimics symptoms of other psychological issues. This misdiagnosis is common, as families struggle to connect uncharacteristic behaviors to a physical ailment rather than psychological flaws.

"When someone is not who they were, think neurology before psychology," advises experts; something the Pierrats intimately understand.

As Marc's condition worsened, their life together began to unravel. In 2022, a neurologist delivered the harsh diagnosis. "There’s no cure or comprehensive care plan," Julia recalled, feeling utterly helpless. Faced with a devastating new reality, their traditional roles shifted, with Julia stepping in as both caregiver and advocate.

Refusing to succumb to despair, Julia embarked on a search for resources, caring for Marc round-the-clock, while also managing her professional responsibilities. She diligently sought support networks, contributing to studies aimed at better understanding FTD. Now a dedicated advocate herself, Julia finds purpose within the chaos.

The daily lives of the Pierrats have adapted but are also filled with poignant moments. They share quiet times, tender walks, and memories reminiscent of their former selves—an unbreakable connection amidst the mourning of who they once were.

“The love we share is still alive,” Julia reflected, standing in their backyard while Marc napped. “It’s fascinating yet heartbreaking, as I know I’ll slowly lose traces of him.”

With an average life expectancy of five to seven years post-diagnosis for Marc’s subtype, the road ahead is uncertain. Symptoms may lead to severe cognitive and physical decline, yet until that day comes, Julia and Marc continue to cherish their love and shared experiences.

From feeding horses at an equestrian center to simply enjoying each other's company in their familiar surroundings, they hold on to what truly matters—their bond, which transcends the disease. As Marc puts it, deceptively simple yet profound: "I still feel kind of healthy, but I worry. I have something I can’t control inside me." Their journey through love, loss, and unwavering support serves as a moving testament to the strength of the human spirit.