Dementia touches on the most intimate aspects of what it means to be human. There is a mountain to be moved for the patient, and another one for the caregiver. In this episode of NeuroCentury, Paweł Świeboda talks to Mary Lou Falcone, author of the recent book “I Didn’t See It Coming: Scenes of Love, Loss and Lewy Body Dementia”. Mary Lou is a classical music publicist. She has supported the careers of celebrated artists such as Gustavo Dudamel, Renée Fleming or James Taylor, and has worked with prestigious music institutions. She is an advocate for Lewy Body Dementia awareness.

Mary Lou’s book is a moving memoir of a loving relationship with her late husband, Nicholas “Nicky” Zann, who died in 2020 of Lewy Body Dementia. Nicky Zann was a rock-and-roll musician as well as world-renowned cartoonist, illustrator and painter. His illustrations introduce each chapter of the book written by Mary Lou Falcone. They were a couple for 37 years.

The conversation is about Mary Lou’s and Nicky’s joint experience with Lewy Body Dementia. We follow the journey from the diagnosis to Nicky’s last moments, exploring the nature of the Lewy Body Dementia, which is the second most common form of progressive dementia in the United States after Alzheimer’s.

Mary Lou and Paweł discuss where caregivers can get the strength and support needed to look after their relatives with dementia, an experience which Mary Lou calls “life-altering” and “life-affirming”. They explore what can be done to improve the patients’ quality of life, as the disease progresses.

As Mary Lou has said, caregiving is a gift. She gives us another one by sharing her experience in the beautifully written book.

#neurocentury #brainhealth #dementia #LewyBodyDementia #MaryLouFalcone

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Music for the NeuroCentury podcast is composed by Rafał Kulczycki