By Mary Lou Falcone

Did you know that Lewy body dementia (LBD) is the second most common form of progressive dementia after Alzheimer’s disease, affecting at least 1.4 million Americans? Plus, more people have LBD than ALS, muscular dystrophy, and cerebral palsy combined. And more people have LBD than are HIV-positive.

LBD is frequently misdiagnosed, as it can mimic Alzheimer’s disease, and more often than not prompts  the questions “Lewy what?” and “How do you spell that?” 

The biggest distinguishing factor of LBD from the other progressive dementias, especially Alzheimer’s disease, is that cognitive awareness fluctuates. Some days the person with LBD is 100 percent with it, understanding everything, and the next day may not even know who you are.

Approximately two months before he died, my beloved husband, Nicky Zann, wrote a poem about what it feels like to be trapped by Lewy body dementia. Here now, to bring awareness from an insider’s viewpoint to this underserved disease, I share Nicky’s poem on how dealing with LBD affected our relationship and our lives.

“The photo on the wall     

 if I’m not mistaken, was     

taken when our love was      

just brand new.     

“It was not long ago, when   

we were making the plans,      

to love each other strong    

and be true.     

“A devil in our home,     

used deception to corrupt     

the loyal angel that     

my heart knew.     

“An instant into this      

cruel and hateful reception     

vengeance replaced the heart that once     

beat true.      

“With blinding rage, and searing pain

a ready knife filled my hand.

I thrashed with intent

cutting them down and never

was the same again.

“While I wait, for my date     

with the hangman and his chore      

and by chance I see my      

reflection     

that less than human sight that     

haunts each tortured night     

that stranger in the mirror is me. . .”

I found this poem three months after Nicky passed and instantly knew that I was meant to find it posthumously. After the initial shock, what it gave me was affirmation that Nicky knew what was happening to him right to the end and that he needed to share it, he needed to help others understand.

It is our hope, Nicky’s posthumously and mine currently, that understanding a bit more about Lewy body dementia will help caregivers, as well as those who are experiencing the disease, know that you are not alone.

Mary Lou Falcone (maryloufalcone.com) is a classical-music publicist and the author of “I Didn’t See It Coming: Scenes of Love, Loss, and Lewy Body Dementia.”  Her husband, Nicholas “Nicky’ Zann,” was a 1950s rock ‘n’ roll musician and a cartoonist and painter.

ABOUT LEWY BODY DEMENTIA

Lewy body dementia (LBD) is the second most common form of progressive dementia after Alzheimer’s disease, affecting at least 1.4 million Americans, most of them 50 or older. It often is misdiagnosed. Robin Williams, the actor and comedian, didn’t know he had it when he died; instead, doctors had told him he had Parkinson’s disease. LBD can cause visual hallucinations, significant lack of alertness, rigid muscles, slowed movement, and tremors, according to the Lewy Body Resource Center. More information is available at lewybodyresourcecenter.org and mayoclinic.org.