“I Didn’t See It Coming” Book and “Facing the Wind” Documentary Film Explore the LBD Journey

| Linda Shockley

| Mary Lou Falcone is a woman of great presence: chic, charismatic and commanding. As a globally respected publicist and career nurturer to top classical music performers and organizations, she has handled thorny crises and strategic planning with relative ease.

But when her beloved husband, visual artist and musician Nicholas T. Zann, was diagnosed with Lewy body dementia (LBD), she was at a loss. She did her homework, of course, learning that LBD is the most common form of progressive dementia after Alzheimer’s disease, affecting more than 1.4 million Americans. And while not rare, it is difficult to diagnose. 

Luckily for other families that have been crushed by similar news, Falcone took notes about being a sole caregiver, collaborating with doctors and researchers, and finding invaluable resources to share.

She wrote a memoir, “I Didn’t See It Coming: Scenes of Love, Loss, and Lewy Body Dementia,” about this extraordinary journey that includes perspectives from friends and family, including acclaimed classical musicians, opera divas, directors and actors.

Falcone also spearheaded, fundraised and executive produced a documentary film, “Facing the Wind” that focuses on the caregivers, the small gods who navigate the emotional and physical toll of caregiving, and often, the financial struggles that can accompany health issues in America. It’s a moving film, filled with love stories, humor and heartbreak. 

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In this interview, Falcone discusses her journey and what comes next. 

Can you share your thoughts on learning that Nicky had been diagnosed with LBD?

When Nicky was diagnosed with LBD, I felt a sense of relief, not that he had LBD, but that we knew the cause of the really erratic behavior that had preceded the diagnosis. It gave a sense of, all right, now we know, now we can deal, now we can find a plan forward.

The most devastating part of it, to put it bluntly, was that Nicky knew in the moment of diagnosis that it was a death sentence. Currently, there is no cure for LBD. Following the diagnosis, the first thing he said was, “I have always wanted to meet your father, and now I will have my chance.” My father died in 1981. Nicky quickly added, “We have had a great run, we cannot be sad.” He now knew that what he was experiencing had a name, had a trajectory, and he could deal with that, as could I. 

It seems lately that families of well-known sufferers of LBD are coming forward to share their diagnoses, increase awareness and create community. Does this have an impact on finding a cure?

Definitely. I give so much credit and thanks to those families, among them families of celebrities, who are willing to come forward and share their information which raises public awareness about all types of dementia and neurological disorders.

You know, in our society, people like Michael J. Fox, Bruce Willis and, posthumously, Robin Williams have made an impact on society through their popularity, through their extraordinary work, and now through being heroes and pioneers in raising awareness. They and their families have bravely come forward to speak openly. 

In the case of Robin Williams, Lewy body dementia was discovered through autopsy. Recently, in Ted Turner’s New York Times front page obituary the cause of death was stated as Lewy body dementia. And, in the case of Bruce Willis, his family, especially his wife Emma, is bravely coming forward to tell the world about frontotemporal dementia.

This is huge because proper attention is getting paid to these often-neglected neurological disorders. The public is introduced to specific types and told about how they manifest. And research is much more likely to be funded once this is spotlighted. Of course, the quintessential example of this is the Michael J. Fox Foundation’s work in Parkinson’s disease research. 

Your beautiful “Facing the Wind” documentary introduces families navigating LBD. How did you select the families that tell their stories in the documentary?

Through the Lewy Body Dementia Resource Center (which became the film’s fiscal sponsor), Norma Loeb and I, along with a woman by the name of Linda Szypula, who became one of the main characters in the film, came together in Bucks County, PA, and talked about what we could do to bring more awareness to LBD.

The idea being discussed was to do short segments on different people with the disease. And I basically said that if I were to be involved in this—and I had just joined the board of the Lewy Body Dementia Resource Center—I would be happy to raise money for a truly professional documentary film. That’s how the idea got expanded.

We found the brilliant filmmakers: Deirdre Fishel as the director and Tony Horiza as the producer. They each have enormous heart, along with great filmmaking skills. And in suggesting to them that they speak with Linda Szypula, it came out that she and her husband Jim were about to embark in their RV on a tour of national parks in the United States. 

One of Jim’s last wishes was to see as many national parks as he could, and along the way  they’d meet people dealing with LBD whom they knew from their Zoom support meetings. One of the strongest moments of the trip comes when Linda and Jim Szypula visit Curry and Linda Whisenhunt in Texas, as you see in the film. Linda Szypula and Curry had an ongoing podcast, but this was the first time they had actually met in person. Also, as part of Linda’s weekly  support group was a woman by the name of Carla Preyer, who lived in Sacramento, and became central to the documentary story line. Unfortunately, Linda and Jim were unable to take their journey all the way to Sacramento as had been planned. 

That’s how the characters on screen evolved. They weren’t necessarily chosen. They were divined, if you will. 

Although all of the families in the documentary had a loved one who was diagnosed with LBD, their experiences could be quite different, even at the same moments in the progression of the disease. Was this surprising?

Not at all. Lewy body dementia is one of the most complex diseases in that it doesn’t manifest the same way in any two people. The saying goes, if you have seen one case of LBD, you have seen ONE case. There are always variations on the theme. So, the basic theme is that there is a cognitive decline accompanied by fluctuations of bouncing back to normalcy, hallucinations, plus motor skill decline which happens more gradually. But how that all manifests, how that journey evolves, is very individually specific.

In Nicky’s case, it was 16 months from diagnosis to death. In the case of Lewy Body Dementia Resource Center founder Norma Loeb’s mother, it was 18 years. I think the stats say the trajectory is 3 to 8 years or something along those lines. But the truth is it can be as short as the 16 months or as long as 18 years.

The LBD journey is all individually crafted. And Lewy, as I call the disease when it presents itself, Lewy makes up its mind what it’s going to do and when.

The documentary illustrates how important caregivers can be for doctors’ understanding of LBD and its treatment. One of the most hopeful elements of the film is seeing that doctors now want to work with the caregivers to find ways for improving patient care. That seems like a breakthrough all on its own.

The breakthrough of doctors listening is enormous. I have been out there screaming from the rafters and advocating for the physicians, physician’s assistants, healthcare workers—all of them—to please, please, please listen to caregivers, they hold a key. 

There is now a growing trend to listen to caregivers because from the patient you sometimes get versions which aren’t always the most accurate. But the caregiver, especially the caregiver who keeps notes—a log noting changes of all types from month to month—can be incredibly helpful to doctors.

That careful logging serves two purposes. One, it provides an accurate trajectory of what’s going on so that doctors know firsthand from you about the progression of the disease. Secondly, it actually saves embarrassment in the medical sessions, because very often the patient will say that certain things didn’t happen, when they did. Or patients simply don’t remember, and for that matter, without notes, neither under pressure might the caregiver always remember all the details. Plus, you’re bringing up things like incontinence. You’re bringing up issues that are unpleasant, and you don’t want to embarrass the patient.

That’s why these tools are so important. At the end of the day, I’m finding more doctors listening, more doctors ready to accept and appreciate information from caregivers. And at major institutions like the University of Pennsylvania, Washington University in St. Louis, the University of Nebraska Medical Center in Omaha, and the University of Michigan at Ann Arbor, doctors are listening to and seeking information from caregivers. I applaud that.

On a purely practical level, fundraising is a daunting task even for experienced filmmakers. Among your executive producers, I see Renée Fleming, Yo-Yo Ma and David Hyde Pierce. How did you approach garnering funds and support to make this happen?

I view fundraising as an art form rather than a business. I say that because personally, I can’t raise money for anything I don’t believe in. But once I have a passion for a subject or a need to have that subject matter exposed and expressed, I become fearless about asking my friends, family, acquaintances, colleagues and business associates for help.  The generosity just poured out. 

The people who give and help you are those who either care about the cause—the disease—or they care about the person you love who has the disease. Or perhaps they know somebody in their own family or extended family, who is struggling with this or something similar. Or, finally, they care about you personally and want to help. 

There are all kinds of reasons that people give money or time.  But I think it’s all associated with a very personal contact and a very personal ask.

What was most challenging about creating this documentary?

I wouldn’t say that creating the documentary created challenges. We had the right components: the right filmmakers, the right story, the right people. I think the challenge in this day and age comes in getting the documentary aired. Film festivals are loaded with documentaries and are being much more selective about what they choose. The streaming outlets are very difficult to crack.

So, number one, we must connect with those who will embrace this subject matter. And number two, they must be willing to actually take a very sensitive subject and have the courage to include it in their programming as PBS has now done.

Even while you wrote a book and produced a documentary, you also collaborated with the Dowd Illustration Research Archive at Washington University to create the Nicky Zann Archive. It will allow researchers to study your husband’s trajectory from rock’n’roll musician to illustrator, cartoonist, caricaturist and painter. Ensuring Nicky’s artistic legacy must be very gratifying. 

I think one of the greatest achievements is the interest in Nicky’s work from Washington University. Having an archive ensures a legacy. It has always been my wildest dream to ensure Nicky’s legacy. And that has come to pass. 

The people at Washington University at the Dowd Archives have heart and soul for what they do. And they fell in love with Nicky’s work, now making it accessible to scholars and students alike. They have done the most magnificent job of taking 1,500 pieces of art and cataloging, archiving, preserving and exhibiting Nicky’s work. It is a dream come true…the dream of every artist to have this kind of appreciation.

What do you most want people to know about caretaking? 

First of all, as a caregiver—and I use the term caregiver, because in my opinion, you give care, you don’t take care—what I want people to know about caregiving is that the caregiver must take care of himself or herself. 

This is not selfish; it is mandatory because if anything happens to you, you cannot do what you need to do for your loved one. So that’s primary. In caregiving, your loved one needs to know they are loved, they are cared for and they are protected.

And as importantly, caregivers need to protect the dignity of the patient. It’s incredibly important for the caregiver to remember that your loved one is not willfully acting out or doing something to make life difficult or miserable. This person can’t help what’s going on.  Remember, it’s Lewy taking over in those difficult moments.

The only request Nicky made after the diagnosis was, “Mary Lou, I know the going is going to get rough. Please help me to keep my dignity.”  And so, I ask all caregivers to please remember that keeping dignity is primary.

Linda Shockley is a long-time journalist and communications professional who most recently created, edited and nurtured Early Learning Nation for six years as an initiative of the Bezos Family Foundation. It is now part of The 74 Million.

To learn more about Lewy Body Dementia, explore these resources.

• The documentary, “Facing the Wind,” is currently live on PBS.org and Passport
• The book “I Didn’t See It Coming: Scenes of Love, Loss, and Lewy Body Dementia” is available at your preferred bookseller. 
• Lewy Body Dementia Resource Center
• Lewy Body Dementia Association
• Alzheimer’s Association
• Caring Kind, the Heart of Alzheimer’s Caregiving 
• The Lewy Body Rollercoaster Podcast
• Lewy Body Life Podcast