I Didn't See It Coming: Scenes of Love, Loss and Lewy Body Dementia

Praise for I Didn't See It Coming: Scenes of Love, Loss and Lewy Body Dementia

“Mary Lou Falcone’s matchless gift for conveying the voices and artistry of others has taken her to the pinnacle of success in classical music public relations. In her powerful memoir, I Didn’t See It Coming, she finally employs that talent to tell her own story, entering into the perspectives of those closest to her at pivotal moments in her life. It is a fascinating approach, made more moving by the inclusion of poetry, the illustrations of her beloved husband, and her own unflinching journal of his final illness. Beyond being essential reading for those caring for someone with Lewy body dementia (LBD), I Didn’t See It Coming is a beautifully rendered, inspiring chronicle of determination, resilience, and boundless love.”  —Renée Fleming, Soprano

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

“Mary Lou Falcone has written a compelling memoir that guides the reader with drama, empathy, humor, and vision through her remarkable life, punctuated by the continuing saga of her great love for her husband and soulmate, Nicky Zann. During this voyage, we meet great artists, international personalities, and her many remarkable friends and family. This volume is a must-read for anyone who has had to deal with the debilitating and tragic results of Lewy body dementia, here seen through the detailed and arduous challenges involving Nicky’s battle with this nefarious disease.” —Joseph W. Polisi, President Emeritus, The Juilliard School

“Witnessing my dear friend ML turn her personal story of love and loss into a universal one of commitment to caregiving and a mission to help others understand the mysteries of often-camouflaged Lewy body dementia has been a revelation to me, as well as a generous gift to anyone who reads I Didn’t See It Coming.” —Mary Beth Peil, Friend and Actor

“Mary Lou Falcone writes like no other about Lewy body dementia. With love, insight, and compassion, she shares that during extremely difficult moments strength kicks in and a painful journey can also be one from which you can emerge with a new sense of purpose. An important book for caregivers who are struggling with someone affected by dementia, especially LBD.” —Jaap van Zweden, Music Director, New York Philharmonic
—Aaltje van Zweden, Author and Founder, Papageno Foundation

“Finally, Lewy body dementia—a disease that has been vastly unknown and misunderstood for decades—comes out of the shadows. Mary Lou Falcone’s candid and intriguing memoir enlightens us on the disease and the difficulties of caregiving, while inspiring us with a life well-lived and filled with love.” —Norma Loeb, Founder, Lewy Body Dementia Resource Center
 
“Mary Lou Falcone is an expert storyteller.  After years of telling other people’s stories, she now tells her own compelling story.”   —JAMES TAYLOR, Singer-songwriter
                                                
“My thanks for sharing this important story with so many people who will appreciate the support you are giving them with this book.”   —ELLEN WINDEMUTH, Academy Award winning filmmaker of My Octopus Teacher 
 
“I Didn’t See It Coming will be a powerful aid, insight, and support to people who have a loved one going through transformation and ultimately death from LBD.  It also carries meaning beyond that for anyone losing a cherished partner to the slow torment that so many diseases bring. It is not an easy read emotionally, but it is a worthwhile one.”  —DEBORAH BORDA, Past President and CEO of the New York Philharmonic 
  
“You have truly brought information, love, compassion to this topic (LBD) and will educate and help so many.”  —DR. ELAINE MISCHLER, Retired pediatric pulmonologist    
 
“You took your ‘autobiography,’ gave it a sense of purpose and urgency by uniting it with your love story and the tribulations of dealing with a filthy disease, thus giving it a compelling universality. WOW. I predict a bestseller, a movie, and everything else.”   —JANE SCOVELL, Collaborative biographer of Elizabeth Taylor, Ginger Rogers, Marilyn Horne
 
“I can imagine a day where we can have a bundle of treatments that stop the various pathophysiology underpinning of Dementia or Mild Cognitive Impairment syndromes. Such an imagination is possible because of pioneering advocates and care partners like Mary Lou Falcone.” —DR. MALAZ BOUSTANI, Richard M. Fairbanks Professor of Aging Research at Indiana University School of Medicine 
 
 
“Congratulations on this important achievement: a significant event in the continued struggle for visibility and ultimately progress in the battle against Lewy body dementia.  The video on the website is heartfelt and compelling…thank you for sharing Nicky's story, and your story.  You continue to inspire me and countless others.”  —DAVID BOHNETT, Philanthropist and technology entrepreneur; Presidential Trustee of the John F. Kennedy Center for the Performing Arts and Vice-Chair of the Los Angeles Philharmonic 
 
“Having just read this wonderfully written book, as a physician I can say that we may not have all the answers, but compassion and understanding do go a long way. This book is a must-read for anyone who has a loved one suffering from Lewy body dementia. The author's personal account of the disease is heart-wrenching and insightful. It gives an honest and raw perspective of what it's like to watch a loved one slowly slip away. Mary Lou Falcone's use of vivid language and personal anecdotes makes this book relatable and impactful. It is a reminder that more awareness is needed for this condition, and that patients and families do not have to feel alone. This devastating disease may physically rob our loved ones away, but it will not succeed in extinguishing their courage, their love, their dignity, and their humanity. Well done, Mary Lou... and thank you."  —SANDRA SENNO, MD/MSW, Brain Medicine Institute & Education-Research Center  
 
“This is such an important and courageous book. I am sure it will resonate with so many readers.”  —SUE FOX, Journalist

“What an endeavor of pure love.  It is impossible to know the many you will help...brava to you...one fabulous lady!”  —NADJA SALERNO-SONNENBERG, Concert violinist/teacher   
 
“I enjoyed the tantalizing dip into your beautifully rendered words and Nicky’s art. I can't wait for more.”  —SUSAN FEDER, Former Program Officer in Arts and Culture Mellon Foundation and Trustee of the Kurt Weill Foundation 
 
“You are an inspiration to us all.”   —SUSAN ELLIOTT, Music journalist 
 
“I’m glad you went back on your word to ‘never write a book.’ I suspect it will be helpful for many, many people.”   —GAYLE OBER, Former President, George Family Foundation 
 
“I am moved on so many levels... including your MAJOR accomplishment in achieving all that went into this project and your DEEP courage to share a personal and difficult experience. “  —HANAKO YAMAGUCHI, Arts administrator 
 
“Our family has very much been impacted by this dreadful disease (LBD), and this makes your dedication to raising awareness all the more personal to me and my family.” —GARY GINSTLING, President and CEO, New York Philharmonic                                
 
“With the rise of cognitive illnesses and our growing, aging population,  we must seek to better understand and address the needs of individuals and their loved ones impacted by the different forms of dementia.   Mary Lou Falcone's personal and raw account of Nicky Zann's Lewy body dementia diagnosis opens a dialogue on what is needed to support individuals and their care partners living with this neurodegenerative disease.   Mary Lou is a courageous trailblazer who is sharing her lived experience so that others can find the support, education, and resources needed.  A simple first step in growing Lewy body awareness starts with knowing how to spell it:  L-E-W-Y.”   —BRITTANY CASSIN, CEO + Co-founder of DigiCARE Realized (a company focused on modernizing care in complex brain disease) 
 
 
“Be it LBD or frontotemporal dementia, it’s frightening and helpful to talk about what happens. The insights on providing care and dealing with loss will be invaluable to everyone.”   —TOM S, Caregiver for his wife