February 23, 2024 • 33 mins
Text your grey haired host for a shout out on an upcoming show!
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.
The Great American Senior Show podcast is produced by Yates & Associates, Public Relations & Marketing. This podcast is part of the network of podcasts streaming under the umbrella of the Pod National News Network. For more information about Yates & Associates or the Pod National News Network, contact Sam Yates at (772) 528-5185 or Sam@Yatespro.com. Sponsorship opportunities are available. The Great American Senior Show is ranked 3rd Best in Senior Podcasts to Follow for 2023 in all podcasts for seniors in a comprehensive survey by feedspot.
30 Best Senior Podcasts You Must Follow in 2023 (feedspot.com)
Yates & Associates is a full-service Public Relations and Marketing company serving select clients throughout the United States and abroad. For more information visit www.YatesPRO.com .
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Sam Yates, Host, Great A (00:11):
Hello, everyone and welcome to another
exciting edition of The GreatAmerican senior show with your
gray haired host, Sam Yates. Aswe head into our third year of
the great American senior show,we're asking our worldwide
audience to drop us a note withyour name and location, and
we'll give you a shout out. Nowlet's find out today's latest
(00:33):
news on The Great Americansenior show. Hello, everyone,
and welcome to another excitingedition of The Great American
senior Show. I'm your grayhaired host, Sam Yates and today
I have a special guest in ourstudio, Mary Lou Falcone and she
is very special because as youcan see over her shoulder, she
(00:54):
has a book behind her. And it issomething that we're going to be
talking about going into somegreat detail. But I always like
to start our program withgetting a little bit about our
guest and the about for Mary LouFalcone, it really sets the
stage for everything we're goingto talk about Mary Lou, welcome
to the program.
Mary Lou Falcone, Author (01:15):
Thank you, Sam, it's a delight to be
with you.
Sam Yates, Host, Florida B (01:18):
Tell us about yourself. I as I
reference that, I'm thinkingback to the book, where there
was really a life changing thingthat happened in your life
involving your family.
Mary Lou Falcone, Author (01:31):
There was I was 10 years old. And my
father suffered a massivestroke. And he fought to live
and he lived. But the kicker onit was that he never spoke again
for the rest of his life, thedamage that had been done, it
was so so great in the brainthat both both centers that
(01:52):
could have been rehabilitated,in terms of speech coming back,
were damaged and couldn't be.
And so what happened was that Ibecame a caregiver at age 10.
For my dad, for my youngersiblings, two younger siblings,
while my mother held down threejobs to keep the family
together. So it was a verydramatic moment. And but it was
(02:16):
a moment that you know, as achild, you just rise to the
occasion. There we are, we'll doit. And so much so that when the
rehab center, which was a veryfamous rehabilitation center,
that just happened to be in ournext town. When they concluded
their their rehab with my dad,they got him to walk again,
(02:36):
which was a miracle andwonderful. But they did not
succeed in bringing the speechback what they didn't know. And
what we didn't know is that itcouldn't be done. However, they
charged me saying that yourbreak 11 year old at this point,
and she can take over. And theytaught me what to do. But a
child should never be put inthat position. Because what a
(02:57):
child does is to try to will itinto being you know, I can make
this happen. I can make my dad'sbig. And I couldn't. And the
frustration was was there forhim. The frustration was there
for me. But I found music Ifound I had a gift. It was a
voice as a God given gift thatthat I that I treasured. And I
(03:18):
realized that when I would singEmotionally, I could let
everything out. And it was a itwas a joy. And people in the
room especially the adults wouldweep. And I thought, well, this
sort of interesting, you know,I'm not violating the family
confidences, but speaking aboutwhat's happening, but
emotionally, I can let it allout in singing. And that led me
(03:40):
to a scholarship at the CurtisInstitute of Music in
Philadelphia, where I went whenI was 17 to audition, I got
accepted. I was very, very luckyis the word I was very lucky to
get in. And they gave me myeducation. It was an all
scholarship score. And fromthere I went on to become a
(04:04):
professional singer. But I knewthat that wasn't where I was
going. The the whole idea ofcommunication was so important
to me. And so at age 28, Iopened a public relations
company, which is another formof caregiving, it's caregiving
for artists and institutions.
It's a broad stretch of theword, but I use it because I
(04:26):
think it's accurate. And in thatsame year that I started my
business, I met my beloved to behusband, Nikki Zan, who at that
time was just starting to breakthrough as an artist. But before
that had been a rocker, as inthe 1950s rock'n'roll shows on
(04:47):
the same stages with Jerry Lewisand Patrick lie and and Johnny
Cash. So Nikki was a FurRealRocker from age 14 to 21 switch
to the art world became verysuccessful. We had a very
successful Little and beautifullife together, rowing,
stretching, you know, makingmaking things work for us and
(05:07):
for others. And then I didn'tsee it coming. And that was the
diagnosis for Lewy bodydementia. Another, another era
for me of caregiving.
Sam Yates, Host, Great Ame (05:23):
That is very well reflected in your
book. And I have to say, yourlate husband's work is in the
book. His illustrations arethere. And when I first picked
up the book, I flipped throughto see the illustrations. When I
read the book, the illustrationsreally took on some extra
(05:45):
meaning and extra, you know, tugon the heart. When you learned
that he had Lewy body, what wasyour reaction and his reaction?
Mary Lou Falcone, Author (05:59):
My reaction was to, to just take a
deep breath and calm, hisreaction was actually
incredible. He said to me in thewaiting room of the hospital
after we had been diagnosed, andI say we because you know, this
kind of a diagnosis is a we werein it together. So what he said
(06:21):
to me was, I have always wantedto meet your father. And now
I'll have my chance, wow, wasmaking his way of telling me
that he knew he was dying. Thesecond thing he said, is a
mantra that I've incorporatedand live by every day of my
life, which is, we have had agreat run, we cannot be sad. And
(06:46):
that's such a beautiful andpowerful statement. And the
third thing that he said was,the slugging is going to get
very rough. And I know it, heknew 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 knowledgewas there. It wasn't foreign to
(07:07):
us. And he said, Please, nomatter what happens, help me to
keep my dignity. And that was avery important moment, and an
important statement. So I'm whatI'm able to say today is, I was
able to help him keep hisdignity. And I think that that
(07:28):
gives me great joy, and alsogreat peace.
Sam Yates, Host, Great Ame (07:35):
Even after he has passed now and
picking up the book, you canfeel that
Mary Lou Falcone, Author (07:40):
it Oh, absolutely. And the book is, you
know, the book we did together,it was kind of interesting is
that before Nikki died aboutthree months before he died, he
said to me, Mary Lou, you haveto write it. Now, what you have
to understand about thisdisease, Lewy Body Dementia is
that unlike Alzheimer's, it isnot a steady, slow descent. It
(08:04):
is a roller coaster, meaningthat cognition wise, one day
you're 100% yourself and lucid,and with it to the nth degree.
And the next day, you look atthe person next to you wouldn't
say who are you? So it was alucid moment when Nicky said you
have to write. And I didn't knowwhat that meant until after he
(08:27):
passed. But in the process ofwriting, because then when he
passed, I knew what I had towrite, I had to write about our
love story to help other peoplein not only Lewy body but in
dementia in general in diseasein general. You know, it's a
rough road, and anything that wecan share that will be helpful,
(08:50):
I think is worth a try. And sothat's what I did, about three
months into the writing. Iwalked into to our bedroom one
day. And I thought to myself,wait a minute, the answer Deck,
the answer deck was a fortunetelling game that Nikki created
in 1984. And we got it publishedin 2004. So it was 20 years
(09:21):
later, why 20 years becausecompanies would keep taking it
and saying no, this isn't forus. It's really good. But no.
And I kept saying we've got tokeep trying because this is
something powerful. You'veyou've created something
powerful in terms of itsconcept, and in terms of terms
of its art. And so 20 yearslater, we licensed the answer
(09:43):
deck to Running Press, it sold100,000 copies, and wonderful,
but here are these drawings thatI happen to now own. And I
thought I wonder if I can matchan emotion with each of the 50
chapters. With a card with adrawing that Nikki has done, and
(10:03):
in that way, Mickey has writtenthe book with me. And so that's
why it says Mary Lou Falconewith illustrations by Nikki Zahn
on the cover, because we didthis together. And so it's
something that in ourretirement, which neither one of
us had done at that point, and Istill haven't. But in
(10:28):
retirement, we wanted to writetogether. And we have to do it
posthumously, but we got to doit. And,
Sam Yates, Host, Great Amer (10:37):
you know, I think that the way you
describe that many times, aspeople age, myself included, and
I have seen it, and I know youhave to seniors, sometimes lose
purpose. But really, if you stopand look at it, or have
something to trigger it, whetherit is someone else in your life,
(11:01):
that that is there to justremind you, or that memory
itself of someone from life.
That's sometimes all it takes togive purpose. And I think that's
exactly my opinion, what hashappened in your book, and I can
see other people reading thebook and finding that purpose.
Which brings me to an importantpoint, how can someone get a
(11:22):
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 themost expedient way to go.
Sam Yates, Host, Florida Bus (11:36):
So I want to urge our audience to
please do that because we'retouching the surface and
somewhat getting down into alittle bit of the story behind
everything. But you will feelthat when you read the book, as
you talk about issues, as wetalk about dementia and
(11:58):
Alzheimer's. I think a lot ofpeople don't realize that the
statistics are pretty staggeringfor our seniors one and nine if
I recall, right, with dementiaand and there it breaks down,
but some pretty staggeringfigures when it comes to our
aging population. Absolutely.
Mary Lou Falcone, Auth (12:16):
Dementia is the umbrella term. So often
with dementia, I think of it asthe umbrella with spokes so
often it can all the spokesAlzheimer's, Lewy body dementia,
vascular dementia,frontotemporal and the list goes
on. There are a lot of them. Andthe what everybody says
(12:37):
Alzheimer's, well, it's notalways Alzheimer's. Alzheimer's
is that slow and steadycognitive to set up a body on
like Alzheimer's has thefluctuations. Meaning that one
day as I was saying before, oneday you're 100% yourself the
next day, you don't even knowwho the person next to you is.
(12:59):
That is the most startlingdifference between them. In
addition to that Lewy body hashallucinations that come with
it, both auditory and visual.
And there are other things aswell, but those are the two main
ones. Lewy Body is a an oftenmisdiagnosed disease because it
mimics Alzheimer's, and itmimics a psychiatric psychiatric
(13:22):
disorder. And it can also mimicand sometimes also include
Parkinson's disease. In Nikki'scase, he was diagnosed with Lewy
Body Dementia with Parkinsonianaspects. So he had Parkinson's
and the we body together, thereis a lot that there is also an
autopsy, they're finding a lotof comorbidity, the existence of
(13:45):
Alzheimer's and Lewy Body, thethe number that's published is
40%. Some doctors have told meit's as high as 60 to 90% in
autopsies that they find thisLewy body is not rare. It is
misdiagnosed, as I said, and itis under spoken about. But it is
(14:07):
not rare. 1.4 million people inthe United States have Lewy Body
11 million worldwide. And that'sout of a figure that dementia
says worldwide. The World HealthOrganization says it's about 55
million people worldwide whohave dementia. So are those 55
(14:29):
million, about 20% 11 millionhave Lewy body dementia. So you
can see the numbers arestaggering. And by the way,
those numbers are old numbers.
We've been using those numbersfor at least 789 years.
Sam Yates, Host, Great Americ (14:50):
I think the awareness factor and
it's certainly something thatone of the reasons that I wanted
you so much to be on our programis because I take a lot of pride
aid in helping spread awarenessof different types. But that
broad umbrella that you'retalking about gets very little
attention. In my opinion.
Sometimes I think our medicalcommunities go with the easiest
(15:11):
pick, they could find, oh, it'sthis and they give the large
overview of something, becausethere seems to be a little bit
of turning the their backs oncertain segments of dementia.
Unfortunately,
Mary Lou Falcone, Author (15:29):
that's true. And I think that happens
because they find it an exercisein futility, meaning that we had
a neurologist who was a geniusat diagnosis. But after
diagnosis, when I tried to getanswers, nothing was
forthcoming. I mean, zero. And Ifound that appalling, I've
(15:51):
really found that incrediblydifficult to swallow, because
that's when you need the help,at least, get us a social worker
to work with. I knew nothingabout where to go. And then I
found this phenomenalorganization called the Lewy
Body Dementia Resource Center.
There was a there is an actorDavid Hyde Pierce, who was a
(16:13):
friend and he told me aboutcaring kind, which is a center
for primarily Alzheimer's, butrelated dementia as well. They
had these courses in dementia infinancial planning for people
with dementia, all of this forfree. And I took every course I
could get. And in the process,they told me about a specialty
(16:36):
organization, the Lewy BodyDementia Resource Center,
founded by a notorious anddedicated woman whose name is
normal lobe, she had dealt withher mom for 18 years with the
disease, which is unheard of Imean, that's really stretching
the, the envelope about as faras it as I've heard it ever go.
(16:58):
But she, she created thisamazing organization of hands on
help support groups, a hotline,a helpline, that where you can
get help, anytime 365 days ayear, eight to eight, but she
definitely picks up and she is aperson who answers the phone.
(17:21):
And for me, when I follow thethe helpline, I got Norma
directly. And she invited meinto her support groups, which I
which I went. And I vowed thatat the end of my journey with
Nikki, that I would come back asa helper in that and not become
a board member of our boardbecause I feel so passionately
(17:44):
about the help that she's givingto so many people.
Sam Yates, Host, Great Ame (17:50):
That leads right into my next
question, because I know justbased on sheer numbers, that
right now, someone who will bewatching or hearing our program
will be going through somethingvery, very similar or if you
learning that they are going tobe going through something very
similar to what you're talkingabout. What advice do you give
(18:13):
them?
Mary Lou Falcone, Author (18:17):
You're not alone. That is the biggest
statement I can make. It veryoften feels like you're the only
person on the planet when you'redealing with a loved one who has
dementia of any kind. But you'renot alone. And it's important to
remember that the other piece ofadvice that I would give just
(18:38):
unstintingly is, please takecare of yourself. We are so busy
taking care of our loved ones,that we often forget that if
anything happens to us, what'sgoing to happen to that loved
one, you really need to takecare of yourself. And that means
things like finding a fewminutes or an hour or a couple
(19:02):
of hours every day to dosomething 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 haveheard is yes, but I need to be
there. How can I help it I leavethe person. Well, that's where
friends and family come in. Andalso perhaps hiring somebody to
(19:26):
come in for an hour. Maybe it'sa student who wants to earn a
little extra money to just sitand chat with with your loved
one or watch. But find someonewho will help you one day a
week. Several people perhaps whowould help you on alternate
days. You need to care foryourself. The other thing that I
(19:49):
will say is when the sleddinggets really rough, and it does.
You are tempted to lose yourtemper, too. Number, and
sometimes you do. And I thinkthat that is an incredibly
important situation to to. Totake stock of because you're
(20:10):
human, it happens. Yes. So whenthis happens, called herself
down, go into another room. Andplease try to release tension.
Now, what I recommend is takinga pillow and screaming into a
pillow. But I can tell you fromexperience that heck, darn and
(20:33):
Dan don't work. What works isthe F word, which in real life I
never used because I don't likethe word. But let me tell you,
in those moments of crisis, thatexploitive going into a pillow
at the top of your lungs reallydoes help. You may have watched
(20:56):
the movie Maestro with BradleyCooper. And he plays Leonard
Bernstein. And when his wife,Felicia dies, Bradley, that is
the Bernstein character goesinto a room sits in a chair
takes a pillow and screams intoeHealth. Here the screen, you
just see the agony and the face.
(21:18):
That's what it takes folks. Andyou could follow that with a
calmer, which is I do a lavendersachet, you can do a bar of
lavender soap. You just inhaleit, and deep breathe and calm
yourself, then you can walk backinto your loved one with a smile
(21:39):
and a released tension so thatthe loved one never has to feel
the tension. It's anotherelement that I want to point out
that even though the personyou're caring for perhaps can't
even talk, my belief is theyfeel everything. Absolutely.
(22:00):
Yes. And if you go on withanger, or tension, or blame in
your eyes, they're going to pickup on it and you're going to
make a terrible situation worse,
Sam Yates, Host, Gr (22:14):
absolutely.
Mary Lou Falcone, Author (22:15):
Nobody asks for this. Nobody, nobody
wants this.
Sam Yates, Host, Great Americ (22:19):
I think the the advice that you're
giving, and I want to say Ithink it was Will Rogers that
had something to say aboutexcellently this, that sometimes
there is nothing better than theworld that you can't find the
right word. And it has to be anexpletive. So I love the story
of the pillow, I'm going to haveto remember to use that myself
(22:39):
sometimes because I'm acaregiver. And that restless
care that you are talking aboutis 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 wasjust a rich story even down to
it. I want to tease ouraudience. Ladies and gentlemen,
(23:00):
there are certain parts that youwill want to read and come away
going, Wait a minute, who wasFj? Wait a minute, who was this
and you use initials. But I haveto ask why the initials in there
instead of saying who theseromantic people were, at least
our audience get the wrong idea.
(23:21):
Read the book.
Mary Lou Falcone, Author (23:24):
Well, I used unused names to a degree.
And I used initials, sometimesbecause that person was known by
the initials, and B is one thatI use. And that's Mary Beth
peel, the great actress, of whomyou may know as as having been
brams on Dawson's Creek, orJackie in the good wife, the
(23:47):
mother in law. And Mary Beth isis 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 hervoice. Because she lived many of
those episodes. with me and withNikki. I think that there are
other people that I don't name.
There are I think two that Idon't name one is the priest,
(24:12):
the priest who at the end, whowas an acquaintance friend, and
he when I asked about lastrites, we have to be Catholic
and and that was very meaningfulto me. And so I knew it was
COVID time and we couldn't bringin a priest, nobody would come
into your house. And so I calledthis this priest and I said,
(24:34):
Father, John, and there areprobably a million father John's
out there. So that's okay. SoFather John, would you do last
rites by speakerphone? Have youever done that? And he said,
Well, no, but I will. And hedid. And at the end of it at
hadn't dawned on me that thatthere has to be an anointing of
(24:54):
the forehead and the palms. Andhe said to me at the And of
doing the rights, Mary Lou, I'mnow empowering you to administer
the oil on the palms and theforehead. And I thought, oh my
goodness, and a woman, first ofall, in the Catholic church that
(25:14):
doesn't have the power that mendo in terms of being praised,
etc. And he was giving one ofthe greatest sacraments in the
church, entrusting it into myhands, which I thought was the
most liberal, generous,incredible thing in the world.
But because I've done some workat the Vatican, if my name is
(25:38):
one that may be known there. Andtherefore, 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 personI called the Empress, who is a
(25:59):
very nasty and cruel humanbeing. I don't want to reward
cruelty or nastiness with aname. Nor do I want to be in any
kind of danger. And this is avery powerful person who is
still alive, and could bedangerous. And I felt like going
(26:21):
there.
Sam Yates, Host, Great A (26:24):
Right?
Right. You have to take care ofyourself now too, because not
only you have things that youhave done in your career and in
your personal life. But thereare 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. Iserved divide my adult life into
three acts. Act One was as aprofessional singer and teacher,
Act Two for 50 years, wasguiding the careers of others.
And I always would sit with myfriend, Mary Beth, and we had
this thing that we call theSeymour kitchen, which basically
(27:07):
was when we were singerstogether we would put a coffee
pot on in the house we wererenting which was the home of
the Seymour's and, and ourSeymour kitchen became our
metaphor for what are we goingto do in life. And we've we've
played that, throughout theworld, whenever we'd sit down
together. In later life, wewould sit down and have this
(27:29):
same discussion. So what's goingto be the third act? You know,
where's it gonna go. And Ididn't know that I knew there
was a third act, but I didn'tknow what it was going to be.
And so when Nikki was diagnosedwith Lewy body dementia, I knew
that part of my third app wasget again, caregiving. And that
(27:50):
was for him. But it wasn't goingto stop there. And I determined
that I probably could do moregood than I've ever done in my
life, by going out and being theadvocate for and spokesperson
for awareness in Lewy bodydementia, not enough is known
(28:12):
about it, and spreading the wordneeded to be done. And so I
thought, okay, I can I think Ican write this book, I've always
said I would never write a book.
And I would never write a tellall meaning I can tell whatever
I want about myself. But I wouldnever write about clients
because that's a violation of avery sacred trust. So we don't
go there. But the book I didwrite, I thought, this is a
(28:35):
calling card. This is the endall in and of itself, is a
calling card to open doors toallow me to walk through that
door and share. And in walkingthrough those doors. I've been
sharing in places like the MayoClinic, the University of
Nebraska Medical Center, theUniversity of Michigan, and the
(28:57):
list goes on. And what I do isto go to these places and speak
to groups about my journey,about Nikki's journey, about our
journey, and what that journeymeans in real time.
Sam Yates, Host, Great Ame (29:16):
It's important for our audience to
get a copy of the book and readit once again, how may they do
that so that they too canunderstand what you're talking
about.
Mary Lou Falcone, Author (29:27):
Thank you. The book is entitled I
didn't see it coming scenes oflove loss and Lewy body dementia
by me Mary's with Falcone. Thebest way to get it is to go to
Amazon amazon.com. Just puteither Mary Lou Falcone Lewy
body dementia and or put in thetitle I didn't see it coming
(29:50):
Meredith Falcone. It will comeup and it's in it's in Kindle
form a full eBook form. It's didthe audiobook I actually read
Should the audiobook and andit's in, of course hardcover.
Sam Yates, Host, Great Am (30:06):
Well, I want to save the last
question, because it's thehardest question. I know, we've
covered a lot of territory. Butthis is the toughest one. Will
you come back for anotherepisode of the future?
Mary Lou Falcone, Author (30:17):
I would be delighted.
Sam Yates, Host, Great Amer (30:21):
I'm going to take you up on that to,
at least for our audience, youknow, sometimes I there's two
versions of the program. One, ofcourse, is the the audio version
that most of you are going to belistening to here in the United
States. And I think we're alsopicked up in 27 countries. And
oddly enough, one of the fastestgrowing is Australia. So, you
(30:44):
know, I know that a lot ofpeople are listening. And
they're, they're always wantinga little bit of that extra
insight. This is the third timethat we have attempted to record
the program because we hadtechnical problems. And it was
one of those things that I hadso much wanted you to tell your
(31:06):
story that I couldn't give up.
So I really want to thank youfor your patience and your
persistence in helping to getthe story out.
Mary Lou Falcone, Author (31:18):
Well, I really appreciate that. And,
and I appreciate the invitationto come back. And when I do come
back, what I'd love to talk toyou about is the movie we've
just made. We have just finisheda documentary film called facing
the wind following threefamilies in real time with Lewy
body dementia, and it ispowerful. So I, I'm very proud
(31:43):
that that's been able to beaccomplished. I will tell you
that the executive producers,here's a teaser. The executive
producers on that film are ReneeFleming. Yo Yo Ma and David Hyde
Pierce, along with Bruce andSuzy Kovner. And yours truly,
Sam Yates, Host, Great Ame (32:00):
that is an awesome tease. Natalie,
ladies and gentlemen, is sheauthor, is she a musician? Is
she a classical singer, apublicist a public relations
Pro, but she understands it thenews business too, you leave
that little bit extra out there,Mary Lou Falcone My pleasure,
(32:21):
and we are going to have youback for that program.
Mary Lou Falcone, Author (32:24):
Thank you so much, Sam. I really
appreciate it.
Sam Yates, Host, Florida Bus (32:28):
So ladies and gentlemen, you see
there's always something new tolook forward to. And I am Sam
Yates, your gray haired host ofThe Great American cedars show,
because we're going to come backwith more. Have a great day,
everybody. Thanks for listeningto the great American seniors
show, America's favorite podcastdevoted to the health welfare,
(32:48):
education and information forseniors of all ages. Our
audience has grown into the1000s Thanks to loyal listeners
just like you. Remember thegreat American seniors show for
the news you need to know Have agreat day everybody
Hello, everyone and welcome to another
exciting edition of The GreatAmerican senior show with your
gray haired host, Sam Yates. Aswe head into our third year of
the great American senior show,we're asking our worldwide
audience to drop us a note withyour name and location, and
we'll give you a shout out. Nowlet's find out today's latest
(00:33):
news on The Great Americansenior show. Hello, everyone,
and welcome to another excitingedition of The Great American
senior Show. I'm your grayhaired host, Sam Yates and today
I have a special guest in ourstudio, Mary Lou Falcone and she
is very special because as youcan see over her shoulder, she
(00:54):
has a book behind her. And it issomething that we're going to be
talking about going into somegreat detail. But I always like
to start our program withgetting a little bit about our
guest and the about for Mary LouFalcone, it really sets the
stage for everything we're goingto talk about Mary Lou, welcome
to the program.
Mary Lou Falcone, Author (01:15):
Thank you, Sam, it's a delight to be
with you.
Sam Yates, Host, Florida B (01:18):
Tell us about yourself. I as I
reference that, I'm thinkingback to the book, where there
was really a life changing thingthat happened in your life
involving your family.
Mary Lou Falcone, Author (01:31):
There was I was 10 years old. And my
father suffered a massivestroke. And he fought to live
and he lived. But the kicker onit was that he never spoke again
for the rest of his life, thedamage that had been done, it
was so so great in the brainthat both both centers that
(01:52):
could have been rehabilitated,in terms of speech coming back,
were damaged and couldn't be.
And so what happened was that Ibecame a caregiver at age 10.
For my dad, for my youngersiblings, two younger siblings,
while my mother held down threejobs to keep the family
together. So it was a verydramatic moment. And but it was
(02:16):
a moment that you know, as achild, you just rise to the
occasion. There we are, we'll doit. And so much so that when the
rehab center, which was a veryfamous rehabilitation center,
that just happened to be in ournext town. When they concluded
their their rehab with my dad,they got him to walk again,
(02:36):
which was a miracle andwonderful. But they did not
succeed in bringing the speechback what they didn't know. And
what we didn't know is that itcouldn't be done. However, they
charged me saying that yourbreak 11 year old at this point,
and she can take over. And theytaught me what to do. But a
child should never be put inthat position. Because what a
(02:57):
child does is to try to will itinto being you know, I can make
this happen. I can make my dad'sbig. And I couldn't. And the
frustration was was there forhim. The frustration was there
for me. But I found music Ifound I had a gift. It was a
voice as a God given gift thatthat I that I treasured. And I
(03:18):
realized that when I would singEmotionally, I could let
everything out. And it was a itwas a joy. And people in the
room especially the adults wouldweep. And I thought, well, this
sort of interesting, you know,I'm not violating the family
confidences, but speaking aboutwhat's happening, but
emotionally, I can let it allout in singing. And that led me
(03:40):
to a scholarship at the CurtisInstitute of Music in
Philadelphia, where I went whenI was 17 to audition, I got
accepted. I was very, very luckyis the word I was very lucky to
get in. And they gave me myeducation. It was an all
scholarship score. And fromthere I went on to become a
(04:04):
professional singer. But I knewthat that wasn't where I was
going. The the whole idea ofcommunication was so important
to me. And so at age 28, Iopened a public relations
company, which is another formof caregiving, it's caregiving
for artists and institutions.
It's a broad stretch of theword, but I use it because I
(04:26):
think it's accurate. And in thatsame year that I started my
business, I met my beloved to behusband, Nikki Zan, who at that
time was just starting to breakthrough as an artist. But before
that had been a rocker, as inthe 1950s rock'n'roll shows on
(04:47):
the same stages with Jerry Lewisand Patrick lie and and Johnny
Cash. So Nikki was a FurRealRocker from age 14 to 21 switch
to the art world became verysuccessful. We had a very
successful Little and beautifullife together, rowing,
stretching, you know, makingmaking things work for us and
(05:07):
for others. And then I didn'tsee it coming. And that was the
diagnosis for Lewy bodydementia. Another, another era
for me of caregiving.
Sam Yates, Host, Great Ame (05:23):
That is very well reflected in your
book. And I have to say, yourlate husband's work is in the
book. His illustrations arethere. And when I first picked
up the book, I flipped throughto see the illustrations. When I
read the book, the illustrationsreally took on some extra
(05:45):
meaning and extra, you know, tugon the heart. When you learned
that he had Lewy body, what wasyour reaction and his reaction?
Mary Lou Falcone, Author (05:59):
My reaction was to, to just take a
deep breath and calm, hisreaction was actually
incredible. He said to me in thewaiting room of the hospital
after we had been diagnosed, andI say we because you know, this
kind of a diagnosis is a we werein it together. So what he said
(06:21):
to me was, I have always wantedto meet your father. And now
I'll have my chance, wow, wasmaking his way of telling me
that he knew he was dying. Thesecond thing he said, is a
mantra that I've incorporatedand live by every day of my
life, which is, we have had agreat run, we cannot be sad. And
(06:46):
that's such a beautiful andpowerful statement. And the
third thing that he said was,the slugging is going to get
very rough. And I know it, heknew 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 knowledgewas there. It wasn't foreign to
(07:07):
us. And he said, Please, nomatter what happens, help me to
keep my dignity. And that was avery important moment, and an
important statement. So I'm whatI'm able to say today is, I was
able to help him keep hisdignity. And I think that that
(07:28):
gives me great joy, and alsogreat peace.
Sam Yates, Host, Great Ame (07:35):
Even after he has passed now and
picking up the book, you canfeel that
Mary Lou Falcone, Author (07:40):
it Oh, absolutely. And the book is, you
know, the book we did together,it was kind of interesting is
that before Nikki died aboutthree months before he died, he
said to me, Mary Lou, you haveto write it. Now, what you have
to understand about thisdisease, Lewy Body Dementia is
that unlike Alzheimer's, it isnot a steady, slow descent. It
(08:04):
is a roller coaster, meaningthat cognition wise, one day
you're 100% yourself and lucid,and with it to the nth degree.
And the next day, you look atthe person next to you wouldn't
say who are you? So it was alucid moment when Nicky said you
have to write. And I didn't knowwhat that meant until after he
(08:27):
passed. But in the process ofwriting, because then when he
passed, I knew what I had towrite, I had to write about our
love story to help other peoplein not only Lewy body but in
dementia in general in diseasein general. You know, it's a
rough road, and anything that wecan share that will be helpful,
(08:50):
I think is worth a try. And sothat's what I did, about three
months into the writing. Iwalked into to our bedroom one
day. And I thought to myself,wait a minute, the answer Deck,
the answer deck was a fortunetelling game that Nikki created
in 1984. And we got it publishedin 2004. So it was 20 years
(09:21):
later, why 20 years becausecompanies would keep taking it
and saying no, this isn't forus. It's really good. But no.
And I kept saying we've got tokeep trying because this is
something powerful. You'veyou've created something
powerful in terms of itsconcept, and in terms of terms
of its art. And so 20 yearslater, we licensed the answer
(09:43):
deck to Running Press, it sold100,000 copies, and wonderful,
but here are these drawings thatI happen to now own. And I
thought I wonder if I can matchan emotion with each of the 50
chapters. With a card with adrawing that Nikki has done, and
(10:03):
in that way, Mickey has writtenthe book with me. And so that's
why it says Mary Lou Falconewith illustrations by Nikki Zahn
on the cover, because we didthis together. And so it's
something that in ourretirement, which neither one of
us had done at that point, and Istill haven't. But in
(10:28):
retirement, we wanted to writetogether. And we have to do it
posthumously, but we got to doit. And,
Sam Yates, Host, Great Amer (10:37):
you know, I think that the way you
describe that many times, aspeople age, myself included, and
I have seen it, and I know youhave to seniors, sometimes lose
purpose. But really, if you stopand look at it, or have
something to trigger it, whetherit is someone else in your life,
(11:01):
that that is there to justremind you, or that memory
itself of someone from life.
That's sometimes all it takes togive purpose. And I think that's
exactly my opinion, what hashappened in your book, and I can
see other people reading thebook and finding that purpose.
Which brings me to an importantpoint, how can someone get a
(11:22):
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 themost expedient way to go.
Sam Yates, Host, Florida Bus (11:36):
So I want to urge our audience to
please do that because we'retouching the surface and
somewhat getting down into alittle bit of the story behind
everything. But you will feelthat when you read the book, as
you talk about issues, as wetalk about dementia and
(11:58):
Alzheimer's. I think a lot ofpeople don't realize that the
statistics are pretty staggeringfor our seniors one and nine if
I recall, right, with dementiaand and there it breaks down,
but some pretty staggeringfigures when it comes to our
aging population. Absolutely.
Mary Lou Falcone, Auth (12:16):
Dementia is the umbrella term. So often
with dementia, I think of it asthe umbrella with spokes so
often it can all the spokesAlzheimer's, Lewy body dementia,
vascular dementia,frontotemporal and the list goes
on. There are a lot of them. Andthe what everybody says
(12:37):
Alzheimer's, well, it's notalways Alzheimer's. Alzheimer's
is that slow and steadycognitive to set up a body on
like Alzheimer's has thefluctuations. Meaning that one
day as I was saying before, oneday you're 100% yourself the
next day, you don't even knowwho the person next to you is.
(12:59):
That is the most startlingdifference between them. In
addition to that Lewy body hashallucinations that come with
it, both auditory and visual.
And there are other things aswell, but those are the two main
ones. Lewy Body is a an oftenmisdiagnosed disease because it
mimics Alzheimer's, and itmimics a psychiatric psychiatric
(13:22):
disorder. And it can also mimicand sometimes also include
Parkinson's disease. In Nikki'scase, he was diagnosed with Lewy
Body Dementia with Parkinsonianaspects. So he had Parkinson's
and the we body together, thereis a lot that there is also an
autopsy, they're finding a lotof comorbidity, the existence of
(13:45):
Alzheimer's and Lewy Body, thethe number that's published is
40%. Some doctors have told meit's as high as 60 to 90% in
autopsies that they find thisLewy body is not rare. It is
misdiagnosed, as I said, and itis under spoken about. But it is
(14:07):
not rare. 1.4 million people inthe United States have Lewy Body
11 million worldwide. And that'sout of a figure that dementia
says worldwide. The World HealthOrganization says it's about 55
million people worldwide whohave dementia. So are those 55
(14:29):
million, about 20% 11 millionhave Lewy body dementia. So you
can see the numbers arestaggering. And by the way,
those numbers are old numbers.
We've been using those numbersfor at least 789 years.
Sam Yates, Host, Great Americ (14:50):
I think the awareness factor and
it's certainly something thatone of the reasons that I wanted
you so much to be on our programis because I take a lot of pride
aid in helping spread awarenessof different types. But that
broad umbrella that you'retalking about gets very little
attention. In my opinion.
Sometimes I think our medicalcommunities go with the easiest
(15:11):
pick, they could find, oh, it'sthis and they give the large
overview of something, becausethere seems to be a little bit
of turning the their backs oncertain segments of dementia.
Unfortunately,
Mary Lou Falcone, Author (15:29):
that's true. And I think that happens
because they find it an exercisein futility, meaning that we had
a neurologist who was a geniusat diagnosis. But after
diagnosis, when I tried to getanswers, nothing was
forthcoming. I mean, zero. And Ifound that appalling, I've
(15:51):
really found that incrediblydifficult to swallow, because
that's when you need the help,at least, get us a social worker
to work with. I knew nothingabout where to go. And then I
found this phenomenalorganization called the Lewy
Body Dementia Resource Center.
There was a there is an actorDavid Hyde Pierce, who was a
(16:13):
friend and he told me aboutcaring kind, which is a center
for primarily Alzheimer's, butrelated dementia as well. They
had these courses in dementia infinancial planning for people
with dementia, all of this forfree. And I took every course I
could get. And in the process,they told me about a specialty
(16:36):
organization, the Lewy BodyDementia Resource Center,
founded by a notorious anddedicated woman whose name is
normal lobe, she had dealt withher mom for 18 years with the
disease, which is unheard of Imean, that's really stretching
the, the envelope about as faras it as I've heard it ever go.
(16:58):
But she, she created thisamazing organization of hands on
help support groups, a hotline,a helpline, that where you can
get help, anytime 365 days ayear, eight to eight, but she
definitely picks up and she is aperson who answers the phone.
(17:21):
And for me, when I follow thethe helpline, I got Norma
directly. And she invited meinto her support groups, which I
which I went. And I vowed thatat the end of my journey with
Nikki, that I would come back asa helper in that and not become
a board member of our boardbecause I feel so passionately
(17:44):
about the help that she's givingto so many people.
Sam Yates, Host, Great Ame (17:50):
That leads right into my next
question, because I know justbased on sheer numbers, that
right now, someone who will bewatching or hearing our program
will be going through somethingvery, very similar or if you
learning that they are going tobe going through something very
similar to what you're talkingabout. What advice do you give
(18:13):
them?
Mary Lou Falcone, Author (18:17):
You're not alone. That is the biggest
statement I can make. It veryoften feels like you're the only
person on the planet when you'redealing with a loved one who has
dementia of any kind. But you'renot alone. And it's important to
remember that the other piece ofadvice that I would give just
(18:38):
unstintingly is, please takecare of yourself. We are so busy
taking care of our loved ones,that we often forget that if
anything happens to us, what'sgoing to happen to that loved
one, you really need to takecare of yourself. And that means
things like finding a fewminutes or an hour or a couple
(19:02):
of hours every day to dosomething 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 haveheard is yes, but I need to be
there. How can I help it I leavethe person. Well, that's where
friends and family come in. Andalso perhaps hiring somebody to
(19:26):
come in for an hour. Maybe it'sa student who wants to earn a
little extra money to just sitand chat with with your loved
one or watch. But find someonewho will help you one day a
week. Several people perhaps whowould help you on alternate
days. You need to care foryourself. The other thing that I
(19:49):
will say is when the sleddinggets really rough, and it does.
You are tempted to lose yourtemper, too. Number, and
sometimes you do. And I thinkthat that is an incredibly
important situation to to. Totake stock of because you're
(20:10):
human, it happens. Yes. So whenthis happens, called herself
down, go into another room. Andplease try to release tension.
Now, what I recommend is takinga pillow and screaming into a
pillow. But I can tell you fromexperience that heck, darn and
(20:33):
Dan don't work. What works isthe F word, which in real life I
never used because I don't likethe word. But let me tell you,
in those moments of crisis, thatexploitive going into a pillow
at the top of your lungs reallydoes help. You may have watched
(20:56):
the movie Maestro with BradleyCooper. And he plays Leonard
Bernstein. And when his wife,Felicia dies, Bradley, that is
the Bernstein character goesinto a room sits in a chair
takes a pillow and screams intoeHealth. Here the screen, you
just see the agony and the face.
(21:18):
That's what it takes folks. Andyou could follow that with a
calmer, which is I do a lavendersachet, you can do a bar of
lavender soap. You just inhaleit, and deep breathe and calm
yourself, then you can walk backinto your loved one with a smile
(21:39):
and a released tension so thatthe loved one never has to feel
the tension. It's anotherelement that I want to point out
that even though the personyou're caring for perhaps can't
even talk, my belief is theyfeel everything. Absolutely.
(22:00):
Yes. And if you go on withanger, or tension, or blame in
your eyes, they're going to pickup on it and you're going to
make a terrible situation worse,
Sam Yates, Host, Gr (22:14):
absolutely.
Mary Lou Falcone, Author (22:15):
Nobody asks for this. Nobody, nobody
wants this.
Sam Yates, Host, Great Americ (22:19):
I think the the advice that you're
giving, and I want to say Ithink it was Will Rogers that
had something to say aboutexcellently this, that sometimes
there is nothing better than theworld that you can't find the
right word. And it has to be anexpletive. So I love the story
of the pillow, I'm going to haveto remember to use that myself
(22:39):
sometimes because I'm acaregiver. And that restless
care that you are talking aboutis 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 wasjust a rich story even down to
it. I want to tease ouraudience. Ladies and gentlemen,
(23:00):
there are certain parts that youwill want to read and come away
going, Wait a minute, who wasFj? Wait a minute, who was this
and you use initials. But I haveto ask why the initials in there
instead of saying who theseromantic people were, at least
our audience get the wrong idea.
(23:21):
Read the book.
Mary Lou Falcone, Author (23:24):
Well, I used unused names to a degree.
And I used initials, sometimesbecause that person was known by
the initials, and B is one thatI use. And that's Mary Beth
peel, the great actress, of whomyou may know as as having been
brams on Dawson's Creek, orJackie in the good wife, the
(23:47):
mother in law. And Mary Beth isis 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 hervoice. Because she lived many of
those episodes. with me and withNikki. I think that there are
other people that I don't name.
There are I think two that Idon't name one is the priest,
(24:12):
the priest who at the end, whowas an acquaintance friend, and
he when I asked about lastrites, we have to be Catholic
and and that was very meaningfulto me. And so I knew it was
COVID time and we couldn't bringin a priest, nobody would come
into your house. And so I calledthis this priest and I said,
(24:34):
Father, John, and there areprobably a million father John's
out there. So that's okay. SoFather John, would you do last
rites by speakerphone? Have youever done that? And he said,
Well, no, but I will. And hedid. And at the end of it at
hadn't dawned on me that thatthere has to be an anointing of
(24:54):
the forehead and the palms. Andhe said to me at the And of
doing the rights, Mary Lou, I'mnow empowering you to administer
the oil on the palms and theforehead. And I thought, oh my
goodness, and a woman, first ofall, in the Catholic church that
(25:14):
doesn't have the power that mendo in terms of being praised,
etc. And he was giving one ofthe greatest sacraments in the
church, entrusting it into myhands, which I thought was the
most liberal, generous,incredible thing in the world.
But because I've done some workat the Vatican, if my name is
(25:38):
one that may be known there. Andtherefore, 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 personI called the Empress, who is a
(25:59):
very nasty and cruel humanbeing. I don't want to reward
cruelty or nastiness with aname. Nor do I want to be in any
kind of danger. And this is avery powerful person who is
still alive, and could bedangerous. And I felt like going
(26:21):
there.
Sam Yates, Host, Great A (26:24):
Right?
Right. You have to take care ofyourself now too, because not
only you have things that youhave done in your career and in
your personal life. But thereare 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. Iserved divide my adult life into
three acts. Act One was as aprofessional singer and teacher,
Act Two for 50 years, wasguiding the careers of others.
And I always would sit with myfriend, Mary Beth, and we had
this thing that we call theSeymour kitchen, which basically
(27:07):
was when we were singerstogether we would put a coffee
pot on in the house we wererenting which was the home of
the Seymour's and, and ourSeymour kitchen became our
metaphor for what are we goingto do in life. And we've we've
played that, throughout theworld, whenever we'd sit down
together. In later life, wewould sit down and have this
(27:29):
same discussion. So what's goingto be the third act? You know,
where's it gonna go. And Ididn't know that I knew there
was a third act, but I didn'tknow what it was going to be.
And so when Nikki was diagnosedwith Lewy body dementia, I knew
that part of my third app wasget again, caregiving. And that
(27:50):
was for him. But it wasn't goingto stop there. And I determined
that I probably could do moregood than I've ever done in my
life, by going out and being theadvocate for and spokesperson
for awareness in Lewy bodydementia, not enough is known
(28:12):
about it, and spreading the wordneeded to be done. And so I
thought, okay, I can I think Ican write this book, I've always
said I would never write a book.
And I would never write a tellall meaning I can tell whatever
I want about myself. But I wouldnever write about clients
because that's a violation of avery sacred trust. So we don't
go there. But the book I didwrite, I thought, this is a
(28:35):
calling card. This is the endall in and of itself, is a
calling card to open doors toallow me to walk through that
door and share. And in walkingthrough those doors. I've been
sharing in places like the MayoClinic, the University of
Nebraska Medical Center, theUniversity of Michigan, and the
(28:57):
list goes on. And what I do isto go to these places and speak
to groups about my journey,about Nikki's journey, about our
journey, and what that journeymeans in real time.
Sam Yates, Host, Great Ame (29:16):
It's important for our audience to
get a copy of the book and readit once again, how may they do
that so that they too canunderstand what you're talking
about.
Mary Lou Falcone, Author (29:27):
Thank you. The book is entitled I
didn't see it coming scenes oflove loss and Lewy body dementia
by me Mary's with Falcone. Thebest way to get it is to go to
Amazon amazon.com. Just puteither Mary Lou Falcone Lewy
body dementia and or put in thetitle I didn't see it coming
(29:50):
Meredith Falcone. It will comeup and it's in it's in Kindle
form a full eBook form. It's didthe audiobook I actually read
Should the audiobook and andit's in, of course hardcover.
Sam Yates, Host, Great Am (30:06):
Well, I want to save the last
question, because it's thehardest question. I know, we've
covered a lot of territory. Butthis is the toughest one. Will
you come back for anotherepisode of the future?
Mary Lou Falcone, Author (30:17):
I would be delighted.
Sam Yates, Host, Great Amer (30:21):
I'm going to take you up on that to,
at least for our audience, youknow, sometimes I there's two
versions of the program. One, ofcourse, is the the audio version
that most of you are going to belistening to here in the United
States. And I think we're alsopicked up in 27 countries. And
oddly enough, one of the fastestgrowing is Australia. So, you
(30:44):
know, I know that a lot ofpeople are listening. And
they're, they're always wantinga little bit of that extra
insight. This is the third timethat we have attempted to record
the program because we hadtechnical problems. And it was
one of those things that I hadso much wanted you to tell your
(31:06):
story that I couldn't give up.
So I really want to thank youfor your patience and your
persistence in helping to getthe story out.
Mary Lou Falcone, Author (31:18):
Well, I really appreciate that. And,
and I appreciate the invitationto come back. And when I do come
back, what I'd love to talk toyou about is the movie we've
just made. We have just finisheda documentary film called facing
the wind following threefamilies in real time with Lewy
body dementia, and it ispowerful. So I, I'm very proud
(31:43):
that that's been able to beaccomplished. I will tell you
that the executive producers,here's a teaser. The executive
producers on that film are ReneeFleming. Yo Yo Ma and David Hyde
Pierce, along with Bruce andSuzy Kovner. And yours truly,
Sam Yates, Host, Great Ame (32:00):
that is an awesome tease. Natalie,
ladies and gentlemen, is sheauthor, is she a musician? Is
she a classical singer, apublicist a public relations
Pro, but she understands it thenews business too, you leave
that little bit extra out there,Mary Lou Falcone My pleasure,
(32:21):
and we are going to have youback for that program.
Mary Lou Falcone, Author (32:24):
Thank you so much, Sam. I really
appreciate it.
Sam Yates, Host, Florida Bus (32:28):
So ladies and gentlemen, you see
there's always something new tolook forward to. And I am Sam
Yates, your gray haired host ofThe Great American cedars show,
because we're going to come backwith more. Have a great day,
everybody. Thanks for listeningto the great American seniors
show, America's favorite podcastdevoted to the health welfare,
(32:48):
education and information forseniors of all ages. Our
audience has grown into the1000s Thanks to loyal listeners
just like you. Remember thegreat American seniors show for
the news you need to know Have agreat day everybody
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