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Author tells Lewy body dementia caregivers: ‘You are not alone’

Mary Lou Falcone (Credit: Olan Montgomery)

Author Mary Lou Falcone brought her message of awareness of the disease of Lewy body dementia to UNMC on Monday, Oct. 28.

Her message to caregivers of loved ones with the disease: “You are not alone.”

Falcone, the author of “I Didn’t See It Coming: Scenes of Love, Loss, and Lewy Body Dementia,” gave her presentation as part of UNMC’s Breakthrough Thinking series. Later that day, she participated in a showing of a new documentary film about LBD titled “Facing the Wind.”

She told the story of her late husband, Nicky Zann, who died from Lewy body dementia in 2020, and her own journey as a caregiver for him.

“Our journey on Earth together ended, but the memory of what he gave, what he did, continues, because he continues to give back through the kind of work that I’m doing,” Falcone said.

Click Play to see Mary Lou Falcone’s Breakthrough Thinking presentation.

She urged caregivers to practice self-care, join support groups, connect with friends, ask for help and even cuss into a pillow to let out tension.

Falcone said Lewy body dementia is the second most progressive dementia after Alzheimer’s disease.

“We have to recognize this disease much more readily than we have been,” she said.

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