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  • Writer's pictureNicole Will

Love, Loss and Lewy Body Dementia with Mary Lou Falcone

Updated: May 26


Natalie Elliott Handy confessions of a reluctant caregiver

Love, Loss and Lewy Body Dementia with Mary Lou Falcone, Caregiver, Author, and Internationally Renowned Classical Music Publicist & Strategist



Love and loss can lead us to become champions for a cause we never expected to face. My guest today is Mary Lou Falcone, an internationally renowned classical music publicist and strategist, who has spent five decades shaping the careers of prominent artists and institutions.


However, it's her personal story that brings an added layer of depth to her illustrious career. Faced with her partner's diagnosis of Lewy Body Dementia, Mary Lou found herself in the most challenging role of her life – that of a caregiver. Her journey through love, loss, and caregiving has led her to become an advocate for Lewy Body dementia awareness, turning her personal struggle into a beacon of hope and inspiration for others.


Throughout our conversation, Mary Lou will share insights from her book, 'I Didn’t See It Coming: Scenes of Love, Loss, and Lewy Body Dementia.' Mary Lou shares how her early life experiences prepared her for caregiving, the challenges she faced while caring for her late husband, Nicky Zann, a popular 1950s rock ’n’ roll musician who became a world-renowned cartoonist, illustrator, and painter, and why she chose to share their story with the world.


We talk about Nicky's life, the profound loss, and the awakening to advocacy. We talk about the complex and often misunderstood world of Lewy Body Dementia (LBD), a condition that affects millions yet remains in the shadows. We'll explore not just the medical aspects of LBD, but the deeply personal experiences that come with caring for someone living with this condition.


Mary Lou also shares about the importance of spreading awareness about LBD, the difficulties caregivers face, and the resources available for those battling this condition. This episode promises to be not just an exploration of LBD, but a testament to the power of love, resilience, and the human spirit in the face of adversity.


To help increase awareness about Lewy body dementia, an often misdiagnosed neurodegenerative disease affecting approximately 11 million people worldwide, the film FACING THE WIND follows the journeys in real time of three families dealing with LBD.  The film is scheduled to be released in late 2024 or early 2025.


It was a delight to meet you and interview you, Mary Lou. Thank you for all you do to raise awareness and the many ways you advocate for those living with Lewy Body disease.



Listen to our episode HERE.



Mary Lou shares about:

  • How she transformed her personal journey of caregiving for her partner with Lewy Body Dementia (LBD) into advocacy for LBD awareness, using her platform to inspire and support others.

  • Her book, "I Didn’t See It Coming: Scenes of Love, Loss, and Lewy Body Dementia," and details her experiences with caregiving, the challenges she faced, and the reasons for sharing her and her late husband Nicky Zann's story.

  • Celebrates the life of Nicky Zann, a 1950s rock ’n’ roll musician turned cartoonist, illustrator, and painter, highlighting his battle with LBD and the impact of his loss on Falcone, leading to her advocacy work.

  • Understanding the complexities of Lewy Body Dementia, aiming to shed light on the medical and personal challenges of the condition, and the importance of understanding and support for those affected.

  • The need for increased LBD awareness, the struggles caregivers endure, and the resources available, showcasing her story as a beacon of hope and a call to action for greater compassion and support in the LBD community.



About Mary Lou Falcone


 Mary Lou Falcone is internationally known as a classical music publicist/strategist who for 50 years has helped guide the careers of celebrated artists– Van Cliburn, Gustavo Dudamel, Renée Fleming, Sir Georg Solti, James Taylor– and advised many institutions including Carnegie Hall, Chicago Symphony, Los Angeles Philharmonic, Philadelphia Orchestra, New York Philharmonic, and Vienna Philharmonic. Combining communication skills with her background as a performer and educator, she now adds another layer: advocate for Lewy body dementia (LBD) awareness. Her late husband, the illustrator Nicky Zann, who died from LBD in 2020, was the catalyst for this, her first book.


Nicholas ‘Nicky’ Zann, the inspiration for this book, was a popular 1950s rock ’n’ roll musician who became a world-renowned cartoonist, illustrator, and painter. His work hangs in the permanent collection of London’s Victoria and Albert Museum, and the illustrations featured throughout this book come from his bestselling fortune-telling card game, The Answer Deck.


ABOUT THE BOOK

I Didn’t See It Coming: Scenes of Love, Loss, and Lewy Body Dementia In this memoir of love, loss, and Lewy body dementia (LBD), Mary Lou Falcone takes readers on a cathartic journey of caregiving that is filled with hope, laughter, and tears, making stops along the way for music, romance, and surprises. Written to inspire and give hope, Mary Lou unflinchingly shares in detail her late husband’s struggle with LBD, providing informative, compassionate, and inspiring insights into dementia. As she emerges transformed and energized, so will the readers of I Didn’t See It Coming: Scenes of Love, Loss, and Lewy Body Dementia.


“A beautiful story of music, faith, compassion, friendship, and undying love.” David Hyde Pierce, Actor

 

koelsch communities caregiver support






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We are not medical professionals and are not providing any medical advice. If you have any medical questions, we recommend that you talk with a medical professional of your choice. willGather has taken care in selecting its speakers but the opinions of our speakers are theirs alone. Thank you for your continued interest in our podcasts.


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Nicole Will is our host and founder of willGather.


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