“Share without shame.” A Conversation with Mary Lou Falcone

The University of Pennsylvania Frontotemporal Degeneration Center (Penn FTD Center) Senior Clinical Research Coordinator Ashlyn O’Halloran recently had the pleasure of interviewing Mary Lou Falcone, a well-known classical musical publicist, performer, and educator turned advocate for Lewy body dementia (LBD) awareness. Her book, I Didn’t See It Coming: Scenes of Love, Loss, and Lewy Body Dementia, featuring artwork by her late husband, Nicky Zann, leads readers through a moving story of love, romance, and deep loss. Mary Lou describes what it was like to care for her sick father as a child and, years later, for her soulmate, Nicky, a 1950’s true rock ‘n’ roller and international illustrator, cartoonist, and caricaturist who suffered from LBD at the end of his life. In addition to her book, Mary Lou worked alongside Renée Fleming, Yo-Yo Ma, Suzie & Bruce Kovner, and David Hyde Price as an executive producer of a new documentary film, Facing the Wind, about LBD and the caregiving journey.

When reflecting on the best moments in their relationship, Mary Lou shared a deep sense of mutual pride and support. She described how they consistently uplifted one another’s lives and careers over almost four decades. Mary Lou says Nicky wasn’t just a partner, but an asset to her career, someone who encouraged growth and celebrated successes. Wherever he went, he brought a sense of decency and kindness that made people feel like friends. He had a unique ability to connect with others, to “blend” into any environment while also making others feel special. He instinctively knew when someone needed to be acknowledged and made sure they felt counted in.

Even towards the end of his life, his creativity never left him. A particularly meaningful moment was a fully rendered 30” x 40” sketch on canvas for his final painting (never completed) - a charcoaled image of a man about to jump off a Ferris wheel with a horrifying look on his face. His last caricature for his godson, using his trademark Bristol paper, India ink, and magic markers, was the last ‘true’ finished art piece Nicky made. Finally, in March 2020, Nicky was very frustrated one day with Mary Lou and yelled at her; she recalls that she needed space, quickly going across the hall to her office to stop herself from saying something she might regret. A half hour later, Nicky comes in with a pencil cartoon drawing: both Nicky and Mary Lou with surgical masks on, holding hands, above his head is a speech bubble with the words, “You’re only trying to help me! I’m so sorry!” This was the very last piece of art Nicky made.

Early Signs and the First Turning Point

In the early stages of Nicky’s illness, Mary Lou began noticing subtle, but concerning changes: paranoia, irritability, fatigue, and difficulty completing simple tasks. Something as routine as writing one check could take him up to 20 minutes. At first these symptoms were easy to rationalize, written off as stress overload or general exhaustion. But one moment stood out as a clear turning point: their trip to Vienna during New Year's 2017. A place remarkably familiar to them, they had made plans to meet with friends for dinner, each coming separately. When Nicky didn’t arrive 45 minutes into their reservation, Mary Lou instinctively knew something was wrong. She set out to find him, believing that somehow, even in a city as vast as Vienna, she would. By chance or something that felt more like fate, they crossed paths in the city square. Instead of relief, Nicky reacted with anger, raising his voice and blaming Mary Lou for not writing down the address for him. In that moment, she steadied herself and accepted the blame, recognizing there was something deeper going on. “That was the signal” she reflected. “Something was dramatically wrong.”

Medical Uncertainty and Missed Clarity

Shortly thereafter, at routine checkups, concerns began to escalate. A cardiologist recommended possible stents following a calcium score test, and soon after, Mary Lou was overcome with a sense that something just wasn’t right. She asked Nicky to marry her after 34 years together. It was a decision rooted both in love and fear, a desire to protect him in the face of the unknown.

After a marriage ceremony early in 2017, followed two days later by triple bypass surgery, she noticed significant changes. “He was never quite the same again,” she said. There were changes in cognition, increasing weakness, and eventually hallucinations - symptoms she would only fully understand two years later.

Efforts to get clarity were slow. She advocated for an updated MRI scan, but their physician delayed the request. Then during a trip to Stockholm in the fall of 2018, the symptoms became harder to ignore. He was struggling with simple tasks like navigating the airport security, checking into the hotel, and spending much of the trip sleeping. Yet, when they were at a social event, “he would go into ‘showtime’ mode,” she explained. “He was 100% himself. No one could tell anything was wrong.” Meanwhile, physical symptoms began to emerge increasingly, like falls, a tremor, and a subtle dragging of his leg. Eventually, that MRI scan she fought for was interpreted as showing only “age-appropriate deterioration,” a conclusion she rejected as nonsense.

A referral to a neurologist in 2019 finally brought answers. After cognitive testing, motor assessments, REM sleep evaluations, and a DaTscan, Nicky was diagnosed with LBD with Parkinsonian aspects. Immediately after that formal diagnosis, Nicky said to Mary Lou “I always wanted to meet your father, now I’ll have my chance.” Even in that moment, he met fear with grace. Mary Lou recounts that he then said, “We’ve had a great run. We cannot be sad.”  Finally, he made one request: “I know this is going to get very rough. Please help me keep my dignity.”  She honored that request throughout his illness. The diagnosis came on March 1^st, 2019. Nicky Zann passed away on July 14^th, 2020.

Caregiving, Community, and Letting Others in

The first seven months after the diagnosis were mostly stable, allowing time for them both to adjust and for Mary Lou to develop new coping strategies. One of the most important decisions they made together was to share Nicky’s diagnosis with close family and friends. Some might see this as difficult, or maybe even as disloyal to the relationship, but for Mary Lou, it was a gift. “Allowing me to talk about it took the fear out of it,” she explained. “It let people help us.” Rather than withdrawing, she actively prepared others for how to engage with Nicky. She would speak with friends in advance, guiding them on what to expect and how to respond, creating a safe and supportive environment for both. “It’s overwhelming and frightening,” she said. “But if you keep saying ‘nothing is wrong,’ you will push people away, and a caregiver cannot do this alone. You will burn out.” She emphasized that openness should be a shared decision: “It’s a dialogue between you and the person with the disease. You come to a consensus together.”

Her advice is simple but powerful: “Share without shame.”

Lessons for Caregivers and Clinicians

Mary Lou describes caregiving as both physically and mentally impossible if done in isolation. Every experience with this disease is different, but no one can manage it alone. “It’s the way you approach it,” she said. “Be gentle. Remind your loved one that they are loved, protected and safe. If you can accomplish those three things, you’ve moved the mountain.”

She also kept a detailed notebook throughout the 16-month progression, documenting symptoms, behavioral changes, and incidents that might otherwise be forgotten. This record became invaluable during medical appointments, especially when Nicky could not recall or acknowledge these events. “To the clinicians,” she urged, “please listen to the caregivers. They have the answers. They see and experience everything.”

Becoming the Caregiver

One of the most profound shifts she experienced was the transition from partner to caregiver. This was not a single moment, but a gradual transformation, marked by increasing cognitive decline. Her approach was quiet, gentle, and deeply intentional.

 “You just do what needs to be done.” There was no shame in the difficult moments. Only

compassion. To her, responding with grace in those moments was an expression of love. “Why would you show frustration to someone when you know they are experiencing symptoms they cannot control?” she said. “Compassion comes first.”

She acknowledges how difficult caregiving can be - you carry exhaustion, fear, and frustration, but she believes these emotions must be set aside in the moment.

Despite being fiercely independent, Mary Lou credits one decision as lifesaving: joining a caregiver support group. “Bless the day I did,” she said. “I needed it, and so does everyone in this position. You cannot do it alone.” She describes support groups as more valuable than any book or single resource.  Support groups are places where lived experiences become shared strength.

Adjustments were made. Even small moments required a shift in mindset. Time itself had to be redefined. She learned to slow down, allowing her husband to take the time he needed to complete simple tasks like getting dressed, and she learned to prioritize dignity over urgency.

When Others Can’t Show Up

Not everyone in their lives was able to face the reality of this diagnosis. She recalls a friend who just couldn’t be there. Their fear got in the way of being present. That absence was painful, but over time she came to understand it. “Not everyone can take a positive route through something like this,” Mary Lou said. “And the way I approach things, it’s not fair to expect that from others.”

For some people, especially relatives, the diagnosis forces a frightening question: Could this happen to me? 

Fear can be paralyzing. “There’s no use in saying ‘should have, would have, could have,” she said. “You did what you were able to do.”

Others tried to minimize the situation, offering well-meaning but dismissive reassurances, like “that happens to me all the time.” In those moments, she chose to educate, gently helping others understand the reality of LBD and what it truly entails.

Advice to Caregivers

Her message to others stepping into this role is direct and urgent: “You are not alone.” She encourages every caregiver to seek support, emphasizing that connection with others in similar situations can be transformative. “You’ll learn more from a support group than anywhere else,” she said. “My ‘lifeline’ was provided by the Lewy Body Dementia Resource Center.”  She is equally adamant about self-care, not as a luxury, but as a necessity. “It’s not selfish to take care of yourself,” she said. “Because if something happens to you, what happens to your loved one?”

For Mary Lou, that self-care took many forms: prayer, yoga, daily walks, and small but intentional moments of solitude. Sometimes, it was as simple and as human as releasing her emotion in private. “Scream into a pillow to release tension, and then deeply inhale the scent of lavender from a bar of soap or a sachet to calm,” she suggested.  Even carving out 15 minutes in the morning with your cup of coffee. “Just take that time to breathe.”

Staying Present

Above all, Mary Lou emphasizes the importance of staying present. The progression of LBD is unpredictable. The “landscape” as she terms it, is constantly changing, often becoming more difficult, quieter, and more isolating. But even within that, there are still moments of beauty. “There are still beautiful things within the hard parts,” she said. Her advice is to not rush past them. “Don’t wish those moments away,” she said, “You may not have them again, but you will always have the memory of what you did to make someone’s life more bearable, and more loving.”

The Chair with Wheels

She remembers the moment when she introduced the wheelchair, which she gently called “the chair with wheels.” She told Nicky it was a gift from their doctor. It wasn’t. She knew he would have resisted using it if he believed she had gone out and bought it for him. One evening, they went for a walk near their home and stopped to rest on a park bench. Carefully she suggested he try sitting in the chair, framing it as something more comfortable in the moment, just something temporary. When it was time to leave, she encouraged him to stay seated and “just see how it feels.” It was a quiet act of care, rooted in dignity and understanding.

A Life Ending on His Own Terms

Through the final stage of Nicky’s illness, Mary Lou’s devotion never wavered. Each night, she held his hand as he fell asleep, reminding him without words, that he wasn’t alone, that he was safe, and that he was loved. She made intentional choices about his care that were right for them.

Near the end of his life, there was one extraordinary moment. After his friends, two at a time, went to his bedside to say their goodbyes, Nicky then asked Mary Lou to assist him by taking him out to the living room to see his closest friends as a group. He was able to say goodbye and thank you to each of them by name, in a way that felt nothing short of miraculous.

“He died on his own terms,” she said, “with pride, peace, and dignity.”

Final Reflection

Three months after his passing, Mary Lou discovered a sketchbook. Inside was Nicky’s last writing, a poem likely written in May 2020, a deeply personal reflection on his own experience trapped by LBD.

In it, he writes about his life and his shared love with Mary Lou, before confronting the

painful reality of his condition - describing the moment he no longer recognized himself, and the horror of seeing that loss reflected back in the mirror. It was a raw and intimate glimpse into his inner world, his awareness, his anguish, and his humanity. She shares this piece in her book: I Didn’t See It Coming: Scenes of Love, Loss, and Lewy Body Dementia.

From Caregiver to Advocate: Her Third Act

In the three years following Nicky’s passing, Mary Lou began to process her experiences through writing. Revisiting the detailed notes she had kept during his illness was deeply cathartic for her, but also profoundly difficult, requiring her to relive each stage of his decline.

Her book now serves as both a personal narrative and a clinical resource, offering insight into the progression of the disease through the eyes of a caregiver. She has also expanded her efforts to raise awareness, including an upcoming documentary airing on PBS titled Facing the Wind, which is focused on the caregiver experience.

She describes her life now as her “Third Act”: Act I: Opera Singer and Teacher. Act II: 50 years public relations strategist in classical music. Act III: spokesperson for caregivers and advocate for LBD.

A Final Message to Caregivers

Mary Lou’s story is not a blueprint; every caregiving journey is different. But it offers a powerful reminder of what is possible when love, patience, and intention guide the way. At the end of it all, she believes caregivers deserve grace. Not just for what they did well, but for the moments they struggled. “You have to pat yourself on the back and say, ‘Well done,’” she said. “No matter what your experience has been, you tried your hardest. You did your best.” And equally as important: “Forgive yourself for the moments that weren’t your best and honor yourself for those beautiful and meaningful moments that will stay with you.”