Mary Lou Falcone, Author, I Didn't See It Coming -- Lewy Body Dementia

Mary Lou Falcone, an internationally known classical music publicist/strategist and public relations expert  has helped guide the careers of many acclaimed artists including Van Cliburn, Gustavo Dudamel, Renée Fleming, Sir Georg Solti, James Taylor, and many more.

In this episode of the Great American Senior Show, Mary Lou joins host Sam Yates in talking about her first book, I Didn’t See It Coming: Scenes of Love, Loss, and Lewy Body Dementia, that describes a Lewy Body dementia journey with her late husband, the illustrator and "rocker" Nicky Zann who died from Lewy Body in 2020.

The illustrator for Mary Lou's book is Nicky Zann -- who helped write the book posthumously. 

Together Mary Lou and Sam share information that will create more awareness of Lewy Body dementia and weave a tantalizing story of enduring love, hope, and resilience. 

Transcript

Sam Yates, Host, Great American Senior Show: 0:11

Hello, everyone and welcome to another exciting edition of The Great American senior show with your gray haired host, Sam Yates. As we head into our third year of the great American senior show, we're asking our worldwide audience to drop us a note with your name and location, and we'll give you a shout out. Now let's find out today's latest news on The Great American senior show. Hello, everyone, and welcome to another exciting edition of The Great American senior Show. I'm your gray haired host, Sam Yates and today I have a special guest in our studio, Mary Lou Falcone and she is very special because as you can see over her shoulder, she has a book behind her. And it is something that we're going to be talking about going into some great detail. But I always like to start our program with getting a little bit about our guest and the about for Mary Lou Falcone, it really sets the stage for everything we're going to talk about Mary Lou, welcome to the program.

Mary Lou Falcone, Author: 1:15

Thank you, Sam, it's a delight to be with you.

Sam Yates, Host, Florida Business Forum, Florida's Number One Business News Podcast: 1:18

Tell us about yourself. I as I reference that, I'm thinking back to the book, where there was really a life changing thing that happened in your life involving your family.

Mary Lou Falcone, Author: 1:31

There was I was 10 years old. And my father suffered a massive stroke. And he fought to live and he lived. But the kicker on it was that he never spoke again for the rest of his life, the damage that had been done, it was so so great in the brain that both both centers that could have been rehabilitated, in terms of speech coming back, were damaged and couldn't be. And so what happened was that I became a caregiver at age 10. For my dad, for my younger siblings, two younger siblings, while my mother held down three jobs to keep the family together. So it was a very dramatic moment. And but it was a moment that you know, as a child, you just rise to the occasion. There we are, we'll do it. And so much so that when the rehab center, which was a very famous rehabilitation center, that just happened to be in our next town. When they concluded their their rehab with my dad, they got him to walk again, which was a miracle and wonderful. But they did not succeed in bringing the speech back what they didn't know. And what we didn't know is that it couldn't be done. However, they charged me saying that your break 11 year old at this point, and she can take over. And they taught me what to do. But a child should never be put in that position. Because what a child does is to try to will it into being you know, I can make this happen. I can make my dad's big. And I couldn't. And the frustration was was there for him. The frustration was there for me. But I found music I found I had a gift. It was a voice as a God given gift that that I that I treasured. And I realized that when I would sing Emotionally, I could let everything out. And it was a it was a joy. And people in the room especially the adults would weep. And I thought, well, this sort of interesting, you know, I'm not violating the family confidences, but speaking about what's happening, but emotionally, I can let it all out in singing. And that led me to a scholarship at the Curtis Institute of Music in Philadelphia, where I went when I was 17 to audition, I got accepted. I was very, very lucky is the word I was very lucky to get in. And they gave me my education. It was an all scholarship score. And from there I went on to become a professional singer. But I knew that that wasn't where I was going. The the whole idea of communication was so important to me. And so at age 28, I opened a public relations company, which is another form of caregiving, it's caregiving for artists and institutions. It's a broad stretch of the word, but I use it because I think it's accurate. And in that same year that I started my business, I met my beloved to be husband, Nikki Zan, who at that time was just starting to break through as an artist. But before that had been a rocker, as in the 1950s rock'n'roll shows on the same stages with Jerry Lewis and Patrick lie and and Johnny Cash. So Nikki was a FurReal Rocker from age 14 to 21 switch to the art world became very successful. We had a very successful Little and beautiful life together, rowing, stretching, you know, making making things work for us and for others. And then I didn't see it coming. And that was the diagnosis for Lewy body dementia. Another, another era for me of caregiving.

Sam Yates, Host, Great American Senior Show: 5:23

That is very well reflected in your book. And I have to say, your late husband's work is in the book. His illustrations are there. And when I first picked up the book, I flipped through to see the illustrations. When I read the book, the illustrations really took on some extra meaning and extra, you know, tug on the heart. When you learned that he had Lewy body, what was your reaction and his reaction?

Mary Lou Falcone, Author: 5:59

My reaction was to, to just take a deep breath and calm, his reaction was actually incredible. He said to me in the waiting room of the hospital after we had been diagnosed, and I say we because you know, this kind of a diagnosis is a we were in it together. So what he said to me was, I have always wanted to meet your father. And now I'll have my chance, wow, was making his way of telling me that he knew he was dying. The second thing he said, is a mantra that I've incorporated and live by every day of my life, which is, we have had a great run, we cannot be sad. And that's such a beautiful and powerful statement. And the third thing that he said was, the slugging is going to get very rough. And I know it, he knew what it was, he knew what this disease was, as did I, because we had a friend who had died of it. So the the knowledge was there. It wasn't foreign to us. And he said, Please, no matter what happens, help me to keep my dignity. And that was a very important moment, and an important statement. So I'm what I'm able to say today is, I was able to help him keep his dignity. And I think that that gives me great joy, and also great peace.

Sam Yates, Host, Great American Senior Show: 7:35

Even after he has passed now and picking up the book, you can feel that

Mary Lou Falcone, Author: 7:40

it Oh, absolutely. And the book is, you know, the book we did together, it was kind of interesting is that before Nikki died about three months before he died, he said to me, Mary Lou, you have to write it. Now, what you have to understand about this disease, Lewy Body Dementia is that unlike Alzheimer's, it is not a steady, slow descent. It is a roller coaster, meaning that cognition wise, one day you're 100% yourself and lucid, and with it to the nth degree. And the next day, you look at the person next to you wouldn't say who are you? So it was a lucid moment when Nicky said you have to write. And I didn't know what that meant until after he passed. But in the process of writing, because then when he passed, I knew what I had to write, I had to write about our love story to help other people in not only Lewy body but in dementia in general in disease in general. You know, it's a rough road, and anything that we can share that will be helpful, I think is worth a try. And so that's what I did, about three months into the writing. I walked into to our bedroom one day. And I thought to myself, wait a minute, the answer Deck, the answer deck was a fortune telling game that Nikki created in 1984. And we got it published in 2004. So it was 20 years later, why 20 years because companies would keep taking it and saying no, this isn't for us. It's really good. But no. And I kept saying we've got to keep trying because this is something powerful. You've you've created something powerful in terms of its concept, and in terms of terms of its art. And so 20 years later, we licensed the answer deck to Running Press, it sold 100,000 copies, and wonderful, but here are these drawings that I happen to now own. And I thought I wonder if I can match an emotion with each of the 50 chapters. With a card with a drawing that Nikki has done, and in that way, Mickey has written the book with me. And so that's why it says Mary Lou Falcone with illustrations by Nikki Zahn on the cover, because we did this together. And so it's something that in our retirement, which neither one of us had done at that point, and I still haven't. But in retirement, we wanted to write together. And we have to do it posthumously, but we got to do it. And,

Sam Yates, Host, Great American Senior Show: 10:37

you know, I think that the way you describe that many times, as people age, myself included, and I have seen it, and I know you have to seniors, sometimes lose purpose. But really, if you stop and look at it, or have something to trigger it, whether it is someone else in your life, that that is there to just remind you, or that memory itself of someone from life. That's sometimes all it takes to give purpose. And I think that's exactly my opinion, what has happened in your book, and I can see other people reading the book and finding that purpose. Which brings me to an important point, how can someone get a copy of the book,

Mary Lou Falcone, Author: 11:26

the very best way is to go to amazon.com. Because that way, you can order it and get it the next day. I think that's the most expedient way to go.

Sam Yates, Host, Florida Business Forum, Florida's Number One Business News Podcast: 11:36

So I want to urge our audience to please do that because we're touching the surface and somewhat getting down into a little bit of the story behind everything. But you will feel that when you read the book, as you talk about issues, as we talk about dementia and Alzheimer's. I think a lot of people don't realize that the statistics are pretty staggering for our seniors one and nine if I recall, right, with dementia and and there it breaks down, but some pretty staggering figures when it comes to our aging population. Absolutely.

Mary Lou Falcone, Author: 12:16

Dementia is the umbrella term. So often with dementia, I think of it as the umbrella with spokes so often it can all the spokes Alzheimer's, Lewy body dementia, vascular dementia, frontotemporal and the list goes on. There are a lot of them. And the what everybody says Alzheimer's, well, it's not always Alzheimer's. Alzheimer's is that slow and steady cognitive to set up a body on like Alzheimer's has the fluctuations. Meaning that one day as I was saying before, one day you're 100% yourself the next day, you don't even know who the person next to you is. That is the most startling difference between them. In addition to that Lewy body has hallucinations that come with it, both auditory and visual. And there are other things as well, but those are the two main ones. Lewy Body is a an often misdiagnosed disease because it mimics Alzheimer's, and it mimics a psychiatric psychiatric disorder. And it can also mimic and sometimes also include Parkinson's disease. In Nikki's case, he was diagnosed with Lewy Body Dementia with Parkinsonian aspects. So he had Parkinson's and the we body together, there is a lot that there is also an autopsy, they're finding a lot of comorbidity, the existence of Alzheimer's and Lewy Body, the the number that's published is 40%. Some doctors have told me it's as high as 60 to 90% in autopsies that they find this Lewy body is not rare. It is misdiagnosed, as I said, and it is under spoken about. But it is not rare. 1.4 million people in the United States have Lewy Body 11 million worldwide. And that's out of a figure that dementia says worldwide. The World Health Organization says it's about 55 million people worldwide who have dementia. So are those 55 million, about 20% 11 million have Lewy body dementia. So you can see the numbers are staggering. And by the way, those numbers are old numbers. We've been using those numbers for at least 789 years.

Sam Yates, Host, Great American Senior Show: 14:50

I think the awareness factor and it's certainly something that one of the reasons that I wanted you so much to be on our program is because I take a lot of pride aid in helping spread awareness of different types. But that broad umbrella that you're talking about gets very little attention. In my opinion. Sometimes I think our medical communities go with the easiest pick, they could find, oh, it's this and they give the large overview of something, because there seems to be a little bit of turning the their backs on certain segments of dementia. Unfortunately,

Mary Lou Falcone, Author: 15:29

that's true. And I think that happens because they find it an exercise in futility, meaning that we had a neurologist who was a genius at diagnosis. But after diagnosis, when I tried to get answers, nothing was forthcoming. I mean, zero. And I found that appalling, I've really found that incredibly difficult to swallow, because that's when you need the help, at least, get us a social worker to work with. I knew nothing about where to go. And then I found this phenomenal organization called the Lewy Body Dementia Resource Center. There was a there is an actor David Hyde Pierce, who was a friend and he told me about caring kind, which is a center for primarily Alzheimer's, but related dementia as well. They had these courses in dementia in financial planning for people with dementia, all of this for free. And I took every course I could get. And in the process, they told me about a specialty organization, the Lewy Body Dementia Resource Center, founded by a notorious and dedicated woman whose name is normal lobe, she had dealt with her mom for 18 years with the disease, which is unheard of I mean, that's really stretching the, the envelope about as far as it as I've heard it ever go. But she, she created this amazing organization of hands on help support groups, a hotline, a helpline, that where you can get help, anytime 365 days a year, eight to eight, but she definitely picks up and she is a person who answers the phone. And for me, when I follow the the helpline, I got Norma directly. And she invited me into her support groups, which I which I went. And I vowed that at the end of my journey with Nikki, that I would come back as a helper in that and not become a board member of our board because I feel so passionately about the help that she's giving to so many people.

Sam Yates, Host, Great American Senior Show: 17:50

That leads right into my next question, because I know just based on sheer numbers, that right now, someone who will be watching or hearing our program will be going through something very, very similar or if you learning that they are going to be going through something very similar to what you're talking about. What advice do you give them?

Mary Lou Falcone, Author: 18:17

You're not alone. That is the biggest statement I can make. It very often feels like you're the only person on the planet when you're dealing with a loved one who has dementia of any kind. But you're not alone. And it's important to remember that the other piece of advice that I would give just unstintingly is, please take care of yourself. We are so busy taking care of our loved ones, that we often forget that if anything happens to us, what's going to happen to that loved one, you really need to take care of yourself. And that means things like finding a few minutes or an hour or a couple of hours every day to do something kind for yourself. It may be a cup of tea, you know, something as simple as that. It may be a walk around the block. And then you know what I have heard is yes, but I need to be there. How can I help it I leave the person. Well, that's where friends and family come in. And also perhaps hiring somebody to come in for an hour. Maybe it's a student who wants to earn a little extra money to just sit and chat with with your loved one or watch. But find someone who will help you one day a week. Several people perhaps who would help you on alternate days. You need to care for yourself. The other thing that I will say is when the sledding gets really rough, and it does. You are tempted to lose your temper, too. Number, and sometimes you do. And I think that that is an incredibly important situation to to. To take stock of because you're human, it happens. Yes. So when this happens, called herself down, go into another room. And please try to release tension. Now, what I recommend is taking a pillow and screaming into a pillow. But I can tell you from experience that heck, darn and Dan don't work. What works is the F word, which in real life I never used because I don't like the word. But let me tell you, in those moments of crisis, that exploitive going into a pillow at the top of your lungs really does help. You may have watched the movie Maestro with Bradley Cooper. And he plays Leonard Bernstein. And when his wife, Felicia dies, Bradley, that is the Bernstein character goes into a room sits in a chair takes a pillow and screams into eHealth. Here the screen, you just see the agony and the face. That's what it takes folks. And you could follow that with a calmer, which is I do a lavender sachet, you can do a bar of lavender soap. You just inhale it, and deep breathe and calm yourself, then you can walk back into your loved one with a smile and a released tension so that the loved one never has to feel the tension. It's another element that I want to point out that even though the person you're caring for perhaps can't even talk, my belief is they feel everything. Absolutely. Yes. And if you go on with anger, or tension, or blame in your eyes, they're going to pick up on it and you're going to make a terrible situation worse,

Sam Yates, Host, Great American Senior Show: 22:14

absolutely.

Mary Lou Falcone, Author: 22:15

Nobody asks for this. Nobody, nobody wants this.

Sam Yates, Host, Great American Senior Show: 22:19

I think the the advice that you're giving, and I want to say I think it was Will Rogers that had something to say about excellently this, that sometimes there is nothing better than the world that you can't find the right word. And it has to be an expletive. So I love the story of the pillow, I'm going to have to remember to use that myself sometimes because I'm a caregiver. And that restless care that you are talking about is very, very important. But I wouldn't go back to the book. And reading the book, you know, when you talk about romance, and you talk about the love. It was just a rich story even down to it. I want to tease our audience. Ladies and gentlemen, there are certain parts that you will want to read and come away going, Wait a minute, who was Fj? Wait a minute, who was this and you use initials. But I have to ask why the initials in there instead of saying who these romantic people were, at least our audience get the wrong idea. Read the book.

Mary Lou Falcone, Author: 23:24

Well, I used unused names to a degree. And I used initials, sometimes because that person was known by the initials, and B is one that I use. And that's Mary Beth peel, the great actress, of whom you may know as as having been brams on Dawson's Creek, or Jackie in the good wife, the mother in law. And Mary Beth is is an amazing human being. And my friend of way over 50 years, and she was with me at the end. So I put a great deal in her voice. Because she lived many of those episodes. with me and with Nikki. I think that there are other people that I don't name. There are I think two that I don't name one is the priest, the priest who at the end, who was an acquaintance friend, and he when I asked about last rites, we have to be Catholic and and that was very meaningful to me. And so I knew it was COVID time and we couldn't bring in a priest, nobody would come into your house. And so I called this this priest and I said, Father, John, and there are probably a million father John's out there. So that's okay. So Father John, would you do last rites by speakerphone? Have you ever done that? And he said, Well, no, but I will. And he did. And at the end of it at hadn't dawned on me that that there has to be an anointing of the forehead and the palms. And he said to me at the And of doing the rights, Mary Lou, I'm now empowering you to administer the oil on the palms and the forehead. And I thought, oh my goodness, and a woman, first of all, in the Catholic church that doesn't have the power that men do in terms of being praised, etc. And he was giving one of the greatest sacraments in the church, entrusting it into my hands, which I thought was the most liberal, generous, incredible thing in the world. But because I've done some work at the Vatican, if my name is one that may be known there. And therefore, I would not want to get him into trouble in any way, shape, or form. And therefore, I didn't reveal who he who he is, who he was, and I want on one, the other one was, was a person I called the Empress, who is a very nasty and cruel human being. I don't want to reward cruelty or nastiness with a name. Nor do I want to be in any kind of danger. And this is a very powerful person who is still alive, and could be dangerous. And I felt like going there.

Sam Yates, Host, Great American Senior Show: 26:24

Right? Right. You have to take care of yourself now too, because not only you have things that you have done in your career and in your personal life. But there are other things yet to come, which means I'm going to say, what does the future hold for? Mary Lou?

Mary Lou Falcone, Author: 26:44

Well, I always wondered what the future is going to hold. I served divide my adult life into three acts. Act One was as a professional singer and teacher, Act Two for 50 years, was guiding the careers of others. And I always would sit with my friend, Mary Beth, and we had this thing that we call the Seymour kitchen, which basically was when we were singers together we would put a coffee pot on in the house we were renting which was the home of the Seymour's and, and our Seymour kitchen became our metaphor for what are we going to do in life. And we've we've played that, throughout the world, whenever we'd sit down together. In later life, we would sit down and have this same discussion. So what's going to be the third act? You know, where's it gonna go. And I didn't know that I knew there was a third act, but I didn't know what it was going to be. And so when Nikki was diagnosed with Lewy body dementia, I knew that part of my third app was get again, caregiving. And that was for him. But it wasn't going to stop there. And I determined that I probably could do more good than I've ever done in my life, by going out and being the advocate for and spokesperson for awareness in Lewy body dementia, not enough is known about it, and spreading the word needed to be done. And so I thought, okay, I can I think I can write this book, I've always said I would never write a book. And I would never write a tell all meaning I can tell whatever I want about myself. But I would never write about clients because that's a violation of a very sacred trust. So we don't go there. But the book I did write, I thought, this is a calling card. This is the end all in and of itself, is a calling card to open doors to allow me to walk through that door and share. And in walking through those doors. I've been sharing in places like the Mayo Clinic, the University of Nebraska Medical Center, the University of Michigan, and the list goes on. And what I do is to go to these places and speak to groups about my journey, about Nikki's journey, about our journey, and what that journey means in real time.

Sam Yates, Host, Great American Senior Show: 29:16

It's important for our audience to get a copy of the book and read it once again, how may they do that so that they too can understand what you're talking about.

Mary Lou Falcone, Author: 29:27

Thank you. The book is entitled I didn't see it coming scenes of love loss and Lewy body dementia by me Mary's with Falcone. The best way to get it is to go to Amazon amazon.com. Just put either Mary Lou Falcone Lewy body dementia and or put in the title I didn't see it coming Meredith Falcone. It will come up and it's in it's in Kindle form a full eBook form. It's did the audiobook I actually read Should the audiobook and and it's in, of course hardcover.

Sam Yates, Host, Great American Senior Show: 30:06

Well, I want to save the last question, because it's the hardest question. I know, we've covered a lot of territory. But this is the toughest one. Will you come back for another episode of the future?

Mary Lou Falcone, Author: 30:17

I would be delighted.

Sam Yates, Host, Great American Senior Show: 30:21

I'm going to take you up on that to, at least for our audience, you know, sometimes I there's two versions of the program. One, of course, is the the audio version that most of you are going to be listening to here in the United States. And I think we're also picked up in 27 countries. And oddly enough, one of the fastest growing is Australia. So, you know, I know that a lot of people are listening. And they're, they're always wanting a little bit of that extra insight. This is the third time that we have attempted to record the program because we had technical problems. And it was one of those things that I had so much wanted you to tell your story that I couldn't give up. So I really want to thank you for your patience and your persistence in helping to get the story out.

Mary Lou Falcone, Author: 31:18

Well, I really appreciate that. And, and I appreciate the invitation to come back. And when I do come back, what I'd love to talk to you about is the movie we've just made. We have just finished a documentary film called facing the wind following three families in real time with Lewy body dementia, and it is powerful. So I, I'm very proud that that's been able to be accomplished. I will tell you that the executive producers, here's a teaser. The executive producers on that film are Renee Fleming. Yo Yo Ma and David Hyde Pierce, along with Bruce and Suzy Kovner. And yours truly,

Sam Yates, Host, Great American Senior Show: 32:00

that is an awesome tease. Natalie, ladies and gentlemen, is she author, is she a musician? Is she a classical singer, a publicist a public relations Pro, but she understands it the news business too, you leave that little bit extra out there, Mary Lou Falcone My pleasure, and we are going to have you back for that program.

Mary Lou Falcone, Author: 32:24

Thank you so much, Sam. I really appreciate it.

Sam Yates, Host, Florida Business Forum, Florida's Number One Business News Podcast: 32:28

So ladies and gentlemen, you see there's always something new to look forward to. And I am Sam Yates, your gray haired host of The Great American cedars show, because we're going to come back with more. Have a great day, everybody. Thanks for listening to the great American seniors show, America's favorite podcast devoted to the health welfare, education and information for seniors of all ages. Our audience has grown into the 1000s Thanks to loyal listeners just like you. Remember the great American seniors show for the news you need to know Have a great day everybody