Looking back, Mary Lou Falcone now recognizes the warning signs of the devastating dementia her husband would later develop.
Her concern began in 2016, when her husband, artist Nicky Zann, was struggling to locate one of his favorite restaurants located just a few blocks from their hotel in Vienna.
He became increasingly tired, paranoid and had difficulty standing. She attributed this to working too much.
But then the hallucinations began. A visit to the specialists would confirm the unimaginable. Nicky was diagnosed with Lewy body dementia, the same disease that actor Robin Williams was diagnosed with at an autopsy.
Although it falls into the same group of dementias as Alzheimer’s disease, Lewy body dementia does not impair memory in early stages, but causes attention problems, hallucinations, movement problems and sleep disorders.
Nicky suffered from hallucinations and memory loss and eventually became unable to feed himself or walk. He died just one year after being diagnosed with the disease.
Nicky Zann, right, was diagnosed with Lewy body dementia in 2019 and died the following year.
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Lewy body dementia (LBD) progresses more rapidly than Alzheimer’s, causing steady but gradual mental decline.
In the early stages, problem-solving and decision-making skills are among the first to deteriorate. Most people with MCI also experience changes in their sleep patterns, with difficulty falling asleep and staying asleep, as well as vivid dreams and nightmares.
MCI also incorporates aspects of Parkinson’s disease from the beginning, such as tremors, muscle stiffness and balance problems. Memory problems often begin later and MCI patients will have good days and bad days with fluctuating levels of mental clarity.
Mary Lou, from New York, told DailyMail.com that, looking back now, she can spot some of the warning signs before Nicky’s forgetful episode in Vienna.
She said: ‘I saw Nikki getting very tired. I saw him getting a bit paranoid. But sometimes that happens. It wasn’t normal for him, but you say, well, maybe he has reasons for feeling that way.’
“IWhen I started seeing Nicky spend 20 minutes writing a check, I started to get a little more alarmed.
But her symptoms rapidly accelerated after she underwent major heart surgery in 2017.
The couple got married about three years ago, although they have been together for almost four decades. Here is a photo of their wedding
When they returned from Vienna, Mary Lou and Nicky learned that he had suffered a heart attack while abroad and needed major surgery.
Mary Lou believes that when Nicky woke up from anesthesia, he was changed forever.
She said: ‘That’s when the hallucinations started.
“It’s quite normal to have hallucinations after anesthesia, but what I didn’t know until much, much later was that those hallucinations never went away.”
Sometimes, I heard voices coming from the faucet or music coming from the pillows. The hallucinations progressed to squirrels running under the bed. Other times, I saw children walking around the apartment.
And instead of gradually recovering and getting stronger after his heart surgery, Nicky was losing weight, was more fatigued than ever, and was often losing his balance.
The first neurologist they saw in the fall of 2018 did an MRI to rule out other possible causes of their symptoms, such as a stroke or tumor. The doctor didn’t think anything was amiss, but referred them to a specialist at another hospital system.
In late February 2019, the specialist performed an MRI-like scan called a dopamine-active transporter, or DaT, scan, which revealed that Nicky had MCI.
Mary Lou said, “The doctor told me that this is definitely Lewy Body Dementia (LBD) with a Parkinsonian appearance. I was shocked.”
Nicky was formally diagnosed on March 1, 2019 at age 75.
MaryLou believes the anesthesia during her heart surgery caused her to have severe hallucinations of squirrels and children running around her apartment.
Ms. Falcone, a prominent classical music publicist who has shaped the careers of young musicians and conductors over a 50-year career, never saw it coming.
An estimated 1.4 million Americans have MCI. Diagnosing it can be difficult because the symptoms are similar to Alzheimer’s, Parkinson’s, schizophrenia and other psychiatric illnesses.
MCI affects the brain more quickly than Alzheimer’s, with people likely to live eight to 10 years after diagnosis. However, people diagnosed with MCI typically live five to seven years longer.
Like Alzheimer’s, there is no cure for DCL. However, there are medications to control the symptoms.
One of them is a drug designed to treat Alzheimer’s that blocks an enzyme that blocks a neurotransmitter that plays a key role in memory and cognition called acetylcholine.
Preventing the enzyme from breaking down the neurotransmitter improves communication between brain cells responsible for memory, thinking, and overall cognitive function.
Other medications are aimed at treating Parkinson’s-like movement symptoms, while others, such as antipsychotics, can treat vivid hallucinations.
After her diagnosis, Nicky’s transformation was radical.
Long considered one of the world’s most prolific and innovative illustrators and cartoonists, his work has appeared in exhibitions around the world, as well as in issues of Newsweek, Esquire, and Fortune, and even graced the cover of The New Yorker.
But he suffered from tremors that prevented him from painting and playing music. He became increasingly paranoid and lost the ability to walk on his own.
Still, there were periods of clarity interspersed with darkness. Fluctuations in lucidity are common in MCI.
Sometimes Nicky could play music as if nothing had changed and he could paint.
MaryLou said: ‘He was a real rocker as a teenager, and that never left him.
“So when I could barely walk (my office is across the way from our apartment) I would hear the piano. He was actually playing it. That sensory memory was still there.”
Mary Lou and Nicky are pictured here in 1983, the year they became a couple.
She did her best to care for Nicky herself, trying to give him as much independence as possible.
She said: ‘Nicky would take two or three hours to bathe, put on his clothes, button up his shirt, all that. Of course, I would peek around the corner and watch.
“He didn’t know I was looking at him, but I did, and as long as he could do that without frustration, I left it at that.”
She felt he deserved “dignity, the feeling that I can do something for myself, that I can control something for myself, because nobody wants control taken away from them.”
The couple managed well at home in the year after Nicky was diagnosed. He accompanied Mary Lou to classical music concerts, although they did not travel any further.
They met friends in town for dinner and afternoon tea, and spent time with Nicky to give Mary Lou some time to herself.
By spring 2020, just as the world was plunged into the Covid pandemic, Nicky’s condition had deteriorated and, according to MaryLou, “was rapidly getting worse.”
A week before he died, he stopped eating and then drinking. He grew progressively weaker as the disease destroyed the part of his nervous system responsible for regulating heart rate and maintaining blood pressure.
MaryLou said she “passed away peacefully” on July 15, 2020.
“About two months before he died, he wrote this poem about what it felt like to descend into the Lewy body, what it felt like to be trapped,” he said.
‘I didn’t find this poem until three months after his death, and when I found it, I sat down and cried because no one describes it better than Nicky.’
