Classical Music Publicist/Strategist Raises Awareness of Lewy Body Dementia in a Book and Film

Lewy body dementia is little known and difficult to diagnose, yet it affects 1.4 million people in the U.S. and approximately 11 million worldwide. Currently, there is no cure. Mary Lou Falcone, a classical music publicist/strategist, nursed her late husband through the condition and has written one of the only memoirs on the topic that is actually a love story in homage to her late husband, to raise awareness of LBD.  It’s titled, “I Didn’t See it Coming: Scenes of Love, Loss, and Lewy Body Dementia.”  A profile about Mary Lou Falcone and the book appeared in the New York Times (Oct. 23, 2023) The Doyenne of Classical Publicists Takes on a Final Client: Herself - The New York Times (nytimes.com)I

In a Q & A below Falcone describes LBD, the symptoms, how it’s treated and the importance of the caregiver’s role. 

In the fall of 2016, Nicholas “Nicky” Zann, a 1950s rock ‘n’ roll teenage idol who became a world-renowned cartoonist, illustrator and painter, started feeling fatigued, had memory lapses, experienced bursts of anger completely out of character and some paranoia. He would take 20 minutes to write one check.

His wife, Mary Lou Falcone, knew something was awry.

After a series of doctor’s visits and triple bypass heart surgery, which both thought would remediate his issues, Zann continued experiencing symptoms that worsened. Simultaneously, he lost weight. After going to a neurologist March 1, 2019, he was diagnosed with Lewy body dementia with Parkinsonian aspects. Says Falcone, “When Nicky was diagnosed, he was totally realistic about the disease, knowing it was fatal.” 

Zann felt trapped by the disease. Falcone has a poem in the book that Zann wrote about eight weeks before he died and left for her that she discovered after he passed. Says Falcone, “It’s the clearest explanation I have even encountered of how someone with LBD feels about being trapped by the disease.”

Currently, Falcone is speaking around the country about her book and working on a documentary, Facing the Wind, due out next year. 

Please explain to readers what Lewy body dementia is and why it’s difficult to diagnose.
Dementia is a big umbrella for many types of brain declines especially as people age. It is the brain misfiring in ways that interfere with daily function, that is, thinking and acting. Specifically, Lewy body dementia (LBD) is a neurodegenerative brain disease in which one size does not fit all, making it hard to diagnose and, once diagnosed, difficult to treat and currently impossible to cure. Here are some facts:

• LBD can mimic Alzheimer’s disease, Parkinson’s disease or a psychiatric disorder.
• LBD is basically rogue protein deposits (alpha synucleins) doing damage in the brain. This is the protein also connected with Parkinson’s disease.
• LBD first robs the person’s executive function and cognitive ability, but to confuse the issue, gives both functions back from time to time so that the person periodically seems to be 100%.
• People with LBD are aware of what’s happening, especially on good days.
• While Alzheimer’s disease manifests as a slow, steady downward progression of primarily memory loss, LBD has three distinctive differences from Alzheimer’s: fluctuations, REM sleep disorder and early hallucinations.
• With LBD, which is often present alongside Parkinson’s disease (as was the case with Nicky), a person’s motor skills can also be affected.
• Some early signs of LBD can include memory slips and problems; cognitive impairment (affecting daily function – planning, processing information); difficulty with motor skills (balance, tremors, stiffness, walking issues, dragging leg); behavioral changes (agitation, anger, paranoia, hallucinations).

Is LBD on the rise, more common among men or women and at what age?We are hearing more about LBD because many of us are fighting as hard as we can to eradicate two phrases: “Lewy what?” and “How do you spell that?” The following people had LBD and were public about it: Robin Williams (who didn’t know he had LBD, it was found in autopsy and shared by his widow), Tom Seaver, Estelle Getty, Casey Kasem, Frank Corsaro, and Dina Merrill. Ted Turner is currently battling the disease which he has had for several years. LBD is more common in men than women (while Alzheimer’s is more common in women). LBD typically hits people in their 60s and 70s.

Are there specific meds to treat LBD?
Not yet, but research is in progress with more needed. Awareness is the first vital step, followed by more dollars for research, and ultimately finding a cure.   CAUTION: The one drug that should never be given to someone with LBD is Haldol. 

Were you able, during your husband’s illness, to have good moments?
Our journey from diagnosis to death was 16 months…one of the fastest ever (the longest I have heard is 16–17 years).  The general timing is about 3-8 years from diagnosis to death.

The pandemic hit in March 2020, so we were isolated but that was a blessing in that I was able to care for Nicky 24/7…hard, yes; also rewarding in these ways. We had dinner each evening at the dining room table, and when he couldn’t get up by himself, I’d give him a huge hug as I gently lifted him; we’d then sway together to Frank Sinatra singing in the background. We went for long walks when he could walk, and when he couldn’t, I wheeled him to the river in the “chair with wheels,” as I called it. 

Why did you take on the role of the only caregiver?
It was out of necessity. During 2019, after the March diagnosis, the first year had its challenges but did not necessitate bringing in outside help, except for physical, speech, and occupational therapists who were trained in LBD therapy.

By the time I needed help from a professional caregiver, the pandemic was on, and I was afraid to bring anyone into the house. 

What are a few lessons from your journey?
Caregivers are not alone as I point out in the book. Again, there is no cure but awareness is vital as a first step. Nicky and I made the joint decision to tell our close friends and family about the diagnosis. If you are able, I encourage others to do the same. People are not mind readers. Most of the time they would be only too happy to help if they understood what was going on and had some pointers about how to be helpful. And, it would be your responsibility as a primary caregiver to offer guidance. For help and information, contact: https://lewybodyresourcecenter.org/  HELPLINE: 516-218-2026 or 833-LBD-LINE.

Here are some other positive actions for caregivers:  

• Join a support group.
• Know that caregiving is improvisation…every day!
• Forgive yourself when you lose it from time to time (and you will) and move on.
• Let your loved one know they are loved, protected and safe.
• At the end of the journey, say thank you to yourself for doing the best job you could.

Tell us about the documentary, please. 
The documentary we’re working on, Facing the Wind, follows two families as they grapple with LBD. You see the different faces of the disease and realize in real time that no two cases are alike. The film, directed by Deirdre Fishel and produced by Tony Heriza, has been funded through many private donations. The Lewy Body Dementia Resource Center, founded and run by Norma Loeb, is the fiscal sponsor of the documentary. Along with Renée Fleming, Yo-Yo Ma and David Hyde Pierce, the other Executive Producers are Suzie and Bruce Kovner and me.

For more than 50 years, Mary Lou Falcone has helped guide the careers of celebrated artists such as Van Cliburn, Renée Fleming, James Taylor and advised many institutions including Carnegie Hall, New York Philharmonic and Vienna Philharmonic. She now adds another layer as advocate for LBD awareness.   https://maryloufalcone.com/