Lewy Body Dementia: a Recipe for Creating a Life You Love, at Any Age 

Embracing Third Act Lewy Body Dementia

by Mary Lou Falcone (guest writer)

Ingredients: passion, love, purpose, curiosity, and patience. 

  • Step 1: Examine your passion and couple it with love and purpose.  
  • Step 2: Ask the question, “What do I need to feel fulfilled?” 
  • Step 3: Unleash your curiosity. 
  • Step 4: Exercise patience. 
  • Step 5: Mix together and you may have a recipe for embracing your third act. 

The Diagnosis: Lewy body dementia

In 2019, my healthy, brilliant, talented husband Nicky Zann was diagnosed with Lewy body dementia (LBD), and we both knew it was terminal. The journey that neither of us saw coming was fast – 16 months from diagnosis to death, four of which included the 2020 pandemic. During these months, we treasured our moments, the good and the bad. Each day counted… and then one day, my beloved was gone. 

Related: Emergency Preparedness: Ways to Help Loved Ones with Dementia  

How did I cope? How did I honor him? How did I move on? Here’s where embracing the idea of a third act started. Was it easy? No. Was it worth it? Yes! 

Acts I and II: Our Life Before

Acts I and II were rewarding. With Nicky, a world-renowned caricaturist, cartoonist, illustrator and painter by my side, everything was possible. Being a professional singer and teacher during Act I led to Act II, a 50-year run as a publicist and strategist for the classical music industry. Shortly before Nicky passed, he told me in a lucid moment (unlike Alzheimer’s disease, Lewy body dementia fluctuates: one minute you are 100% yourself, and the next, you don’t know the person standing next to you), “You have to write.”  

Act III: The Book, Advocacy, and Being a Spokesperson

My silent reaction was, “Write what?” After Nicky passed, I knew. I had to write about my journey as a caregiver – starting at age ten in caring for my 37-year-old father who had been incapacitated by a massive stroke and continuing with our LBD journey to help caregivers cope with the disease. The result was the book “I DIDN’T SEE IT COMING: Scenes of Love, Loss, and Lewy Body Dementia.” 

Vulnerable but fortified with this book as my calling card, my Act III as an advocate and spokesperson for LBD awareness ticked all the recipe checkboxes.  

Clear from the beginning were the passion and need to bring awareness to an often-misdiagnosed disease, LBD, and help answer the question: “Lewy what?” Also clear were the curiosity, need to learn about the disease, and the need to share the message “You are not alone.” Patience spilled over. The book, along with a new LBD documentary film, “Facing the Wind,” have become my tools to bring awareness and comfort to an estimated 1.4 million Americans with LBD, their families and friends. With the help of enlightened doctors and organizations, doors are opening. 

At age 79, these calling cards have allowed me to embrace my Act III with a sense of renewed purpose and passion throughout America, bringing information and hope through my story.  

Mary Lou Falcone is an internationally-known classical music publicist/strategist and author of the memoir “I DIDN’T SEE IT COMING: Scenes of Love, Loss and Lewy Body Dementia.” More at www.maryloufalcone.com