In retrospect, Mary Lou Falcone now recognizes warning signs of the devastating dementia her husband would later develop.
Her concern began in 2016, when her husband, artist Nicky Zann, struggled to locate one of his favorite restaurants located just a few blocks from his hotel in Vienna.
He became increasingly fatigued, paranoid, and unsteady on his feet. She chalked it up to working too hard.
But then, the hallucinations started. A visit to specialists would confirm the unimaginable. Nicky was diagnosed with Lewy body dementia, the same disease actor Robin Williams was diagnosed with post-mortem.
While under the same umbrella of dementias as Alzheimer’s disease, Lewy body dementia does not ravage the memory early on. Instead, it causes attention issues, hallucinations, movement problems, and sleep disorders.
Nicky suffered from hallucinations and memory loss and eventually was unable to feed himself or walk. He died just one year after he was diagnosed.
Nicky Zann, right, was diagnosed with Lewy body dementia in 2019 and passed away the following year
Lewy body dementia (LBD) progresses more rapidly than Alzheimer’s, which causes a steady but gradual mental decline.
In the early stages, problem-solving and decision-making skills are among the first to deteriorate. Most people with LBD also suffer changes to their sleep patterns, with difficulty falling and staying asleep, as well as vivid dreams and nightmares.
LBD also incorporates aspects of Parkinson’s disease early on, such as tremors, muscle stiffness, and balance problems. Memory issues typically start later, and LBD 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 fatigued. I saw him getting slightly paranoid. But, sometimes, that happens. It wasn’t normal for him, but you say, well, maybe he has reason to feel that way.
‘Then I began to see Nicky spending 20 minutes writing one check, and I began to get a little bit more alarmed.’
But his symptoms accelerated rapidly after undergoing major heart surgery in 2017.
The couple married about three years ago, though they have been together for nearly four decades. Their wedding photo is shown here
Once they returned from Vienna, Mary Lou and Nicky learned he had suffered a heart attack while abroad and needed major surgery.
When Nicky awoke from anesthesia, Mary Lou believes, he was forever changed.
She said: ‘That’s when the hallucinations started.
‘It’s pretty normal to have hallucinations after anesthesia. But what I didn’t know until much, much later, was that these hallucinations never left.’
Sometimes, he would hear voices coming from the faucet or music coming out of pillows. The hallucinations progressed to squirrels running underneath their bed. Other times, he saw children walking around their apartment.
And instead of gradually recovering and getting stronger following his heart surgery, Nicky was losing weight, he was more fatigued than ever, and was losing his balance often.
The first neurologist they saw in the fall of 2018 took an MRI to rule out other possible causes of his symptoms, including stroke or a tumor. Nothing seemed amiss to the doctor, but he referred them to a specialist in a different hospital system.
In late February of 2019, the specialist performed an MRI-like scan called the dopamine active transporter scan, or DaT, which revealed Nicky had LBD..
Mary Lou said: ‘ The doctor said, definitively, this is Lewy body dementia (LBD) with Parkinsonian aspect. I was flabbergasted.’
Nicky was formally diagnosed on March 1, 2019 at age 75.
MaryLou believes that anesthesia during his heart surgery sparked severe hallucinations of squirrels and children running around their apartment
Ms Falcone, a preeminent classical music publicist who has molded the careers of young musicians and conductors over a 50-year career, never saw it coming.
An estimated 1.4million Americans have LBD. Diagnosing it can be difficult, as symptoms mirror those of Alzheimer’s, Parkinson’s, schizophrenia, and other psychiatric conditions.
LBD ravages the brain more rapidly than Alzheimer’s, which people can live with for around eight to 10 years after diagnosis. People diagnosed with LBD, however, generally live for about five to seven more years.
Similar to Alzheimer’s, LBD has no cure. There are medications to manage the symptoms, though.
One of them is a drug designed to treat Alzheimer’s which block an enzyme that blocks a neurotransmitter that plays a key role in memory and cognition called acetylcholine.
Preventing that enzyme from breaking the neurotransmitter down improves communication between brain cells responsible for memory, thinking, and overall cognitive function.
Another medication is geared toward treating the Parkinson’s-like movement symptoms, while others such as antipsychotics can treat the vivid hallucinations.
After his diagnosis, Nicky’s transformation was stark.
He had long been considered one of the most prolific and innovative illustrators and cartoonists, his work appearing in exhibits around the world, as well as issues of Newsweek, Esquire, and Fortune, even making the cover of The New Yorker.
But he was wracked with tremors that disrupted his painting and his ability to play music. He was increasingly paranoid and lost his ability to walk on his own.
Still, there were periods of clarity interspersed in the darkness. Fluctuations in lucidity are common with LBD.
Sometimes, Nicky was able to play music as if nothing had changed and he was able to paint.
MaryLou said: ‘He was a for-real rocker as a teenager, and that never left.
‘So when he could barely walk – my office is across our apartment – I would hear the piano wailing. He was actually playing it. That sense memory was still there.’
Mary Lou and Nicky are pictured in 1983, the year they became a couple
She did what she could to care for Nicky herself, trying to give him as much independence as possible.
She said: ‘It would take Nicky two to three hours to bathe, to get his clothing on, to button his shirt, all of that. Of course, I would peek around the corner and check in.
‘He didn’t know I was watching him, but I did, and as long as he could do it without frustration, I just let it be.’
She felt he deserved ‘the dignity, the feeling that I can do something for myself, I can control something myself, because nobody wants their control taken away from them.’
The couple managed well at home the year after Nicky was diagnosed. He went with Mary Lou to classical music concerts, though they didn’t travel anymore.
They would meet with friends in town for dinners and afternoon tea, and they would spent time with Nicky to give Mary Lou the occasional time to herself.
By the spring of 2020, just as the world was thrust into the Covid pandemic, Nicky’s condition had deteriorated and, according to MaryLou, ‘it escalated quickly’.
A week before he died, he stopped eating. Then he stopped drinking. He got progressively weaker as the disease ravaged the part of his nervous system responsible for regulating heart rate and maintaining blood pressure.
MaryLou said he ‘peacefully left’ on July 15, 2020.
‘About two months before he died, he wrote this poem about how it felt to descend into Lewy body, what it felt like to be trapped,’ she said.
‘I didn’t find this poem until three months after he passed, and when I found it, I just sat and wept because nobody describes it better than Nicky did.’
