A recent episode of Inside Edition explores the experiences of the late Susan Suchan and her family as they navigated her symptoms and eventual FTD diagnosis. The family’s FTD journey is the subject of the documentary “Susan,” which will debut later this year.

Seven Years of Uncertainty

Suchan’s daughter Heather Miller told Inside Edition that her mother was her best friend and an excellent grandmother. Over time, however, Suchan began acting differently; the changes were subtle at first but became more apparent and worrying over time. After Miller had a miscarriage, she phoned her mother for support, only for Suchan to uncharacteristically answer, “Why would you think I could come?”

In 2006, Suchan went to the doctor after a concerning incident where she could not smell a fire that had broken out in her kitchen. She soon was diagnosed with early-onset Alzheimer’s disease – inaccurately, as it turned out. It would be seven years before Suchan and her family finally received the correct diagnosis: FTD.

“There’s Diagnosis, There’s Death, but in Between, There’s Life”

After an initial period of shock and helplessness, Suchan adopted a positive, determined outlook, and committed herself to educating others about life with FTD. Miller previously told AFTD that Suchan made it her mission to find others like her and bring their voices to the forefront; she told Inside Edition that her mother’s goals were to live life to the fullest and to help as many people as possible. “She realized, ‘I’m still alive, I’m still living’,” Miller said. “She used to say, ‘There’s diagnosis, and there’s death, but in between, there’s life.”

Eventually Suchan met the documentarian Russ Kirkpatrick, agreeing to let him and his crew film her FTD journey so she could show the world what this disease is truly like. While not everyone diagnosed is aware of their condition due to anosognosia, a common symptom of FTD, Kirkpatrick told Inside Edition that Suchan described how FTD felt to her in an unfilmed conversation. “There was a moment where [I asked], ‘How would you describe what’s going on?’”, Kirkpatrick recalled, to which Suchan responded, “It’s like there’s a worm in your head, munching around; you never know where it’s gonna go and what you’re left with after.”

Suchan died in 2018. The documentary Susan is currently showing at film festivals, with discussions about distribution ongoing.

Others who have navigated the FTD journey have also put their experiences to film. The short film Pedacito de Carne shares what it is like to navigate FTD for millennials and their parents; the film is based on the lived experiences of AFTD Ambassadors Diana and Sandra Gonzalez-Morett as their mother’s care partners.