Leaving a Legacy of Love and Care with Mary Lou Falcone

Episode Transcript

Dr. Correa:
From the American Academy of Neurology, I'm Dr. Daniel Correa.

Dr. Peters:
And I am Dr. Katy Peters. This is the Brain & Life Podcast.

Dr. Correa:
Welcome back to the Brain & Life Podcast. Sometimes we need a break from our work, right, Katy?

Dr. Peters:
Absolutely.

Dr. Correa:
One of the things I love to do, and it's a big feature for us, my wife and I, in New York is to go out and catch a concert or another musical performance. What do you like to do when you're not at work, Katy?

Dr. Peters:
Well, I like to do the same thing. My husband and I are actually taking an art class tonight. So I love to dabble in art. Sometimes it is a performance art. I live in Durham, North Carolina. So our venue of choice is the DPAC, also known as the Durham Performing Arts Center. It has a wide variety of performances. My husband tends to like classical music, and I avoid that. No, I'm just joking. I'm learning to like it through him, but I like a bit more modern flair. How about you?

Dr. Correa:
I like a mix. But particularly my wife and I go out to see both a lot of musical performances, a lot of jazz or some classical in New York, but particularly also a lot of dance performances. I think we've mentioned that before with our interview with the Kennedy Performing Arts Center and their adaptive arts program.
But just like all the people behind the scenes in healthcare that we work and value very much, that help hospitals and clinics work successfully, I'm also amazed learning about all the things that need to go on behind and backstage, the publicists, the strategists, everything that helped bring the things to the stage and film and musical albums to life, and really at the quality that really we enjoy.
Our guest today has done some of this for many years. In fact, if you've ever heard a live recording of Renee Fleming or something from the stage at Carnegie Hall, then probably Mary Lou Falcone is one of the key people that helped make this a reality.
We talked to her about hers and her husband's story of living with his Lewy body dementia diagnosis and managing his life through the condition, and also her memory and some of the stories about his life as a New York artist in every sense of the word. I mean he played with bands. He did art and visual arts. It's an amazing story to hear from her.

Dr. Peters:
Well, I look forward to listening to it.

Dr. Correa:
I really hope you enjoy the episode. Welcome to the Brain & Life Podcast. Today we continue some of our experiences within the musical world as we get a chance to speak with a new author and a classical music publicist and strategist who's worked for over 50 years helping support the careers of many different artists, anyone from Gustavo Dudamel, Renee Fleming, James Taylor, and many music organizations around the world, including some that you may know thinking of Carnegie Hall and the Los Angeles Philharmonic, the New York Philharmonic, and the Vienna Philharmonic.
But Mary Lou Falcone has taken these skills also in her life to support her partner, to celebrate his life, and be along his side through the experience of living with Lewy body dementia, and has connected with the community to raise awareness of this condition and other dementias. She brings a lot of this together in her new book titled I Didn't See It Coming.
Her love and partner Nicky Zann was a true New York artist who explored joy and art through many different ways, painting, illustration, and music. We'll hear some more of that from Mary Lou now. Thank you so much, Mary Lou, for joining us and the listeners.

Mary Lou Falcone:
Daniel, thank you for inviting me. I appreciate being here.

Dr. Correa:
I wanted to go back because I wasn't familiar with Nicky and his work. I had really enjoyed taking a look at some of the artwork online and learn more about his musical career. But help us and the listeners get a little bit more of a context for who's Nicky Zann?

Mary Lou Falcone:
Nicky Zann was an incredible artist, but more importantly was an incredible person. So we'll go back to his early days. Nicky as a teenager was a rock and roll idol on the same stages as Jerry Lee Lewis, Patsy Cline, and Johnny Cash. So at 14, his parents allowed him to go on the road and do his rock and roll. He was a songwriter, he was the pianist, and he was the lead singer in this band, Nicky Zann and the Vitamins.

Dr. Correa:
Wow.

Mary Lou Falcone:
Yeah.

Dr. Correa:
So, wait, I mean not just a teenager who hopes to grow up and become a rock star, but literally was already a rock star at that stage. That's amazing.

Mary Lou Falcone:
That is correct. His parents, I think, knowing that they couldn't keep him contained, said yes to him going out on the road. Obviously he had a manager who traveled with him. But from age 14 to 21, Nicky was a for real rock and roller in the big leagues. At 21, he decided, "You know what? Enough of rock and roll. Now I'm going to go with my other passion, which is art."
He studied, he cobbled together his education going to the leading artists of the day that he respected and studied with them. By age 30, he was a major illustrator, cartoonist, caricaturist in the art world.

Dr. Correa:
That is so much by age 30. I mean changing a career in his early 20s? That's just amazing.

Mary Lou Falcone:
Yeah. The aftermath is that the work, his work, today hangs in the Victoria and Albert Museum, in their pop art collection, where the legend there says that he, Nicky, was the inspiration for Roy Lichtenstein. So that sets Nicky up as a world-class artist.

Dr. Correa:
That is amazing. Tell me, how is it that you and Nicky met and started your career crossing arts in many different ways?

Mary Lou Falcone:
Well, I met Nicky in 1973. I was age 28. He was age 30. I had started my career as a professional singer. So at age 20, I graduated from the Curtis Institute of Music in Philadelphia and, from there, for the next eight years, chaired the music department at The Baldwin School in Bryn Mawr and was on the road as an opera singer and concert singer. So totally different background than Nicky's, but music was at the core of it.
In 1973, I decided that I was a more effective spokesperson for the art than I was the practitioner of it. I decided that I could champion the careers of people that I really loved and respected, and I decided to open a public relations business. The only caveat was that I knew nothing about the public relations business. But I did know about music and I did have a passion for it and I wanted to bring other people to it, and I wanted to be able to support those artists that I thought were fantastic.
And so, in 1973, two major things happened. I opened my public relations business and at a party around Christmas time of that year, I met Nicky Zann.

Dr. Correa:
Well, it sounds like both of you in your own ways, like many greats, brought curiosity and dedication and interest, and then tackled that thing that you just didn't actually necessarily know a whole lot about it yet, but dedicated your time and passion to it.

Mary Lou Falcone:
Absolutely. Happily, my hunch was right. It panned out for me as a career and art panned out for Nicky as a career. But when we met, as I mentioned, I was 28, he was 30, and we had this wonderful spark across the room. It was electricity just flowing back and forth. Then I met his wife.

Dr. Correa:
Oh.

Mary Lou Falcone:
Yes, yes. Her name was Mary Jo. So Mary Lou, Mary Jo. It didn't go so far afield with the names. The three of us started a conversation and we became lifelong friends. About 10 years after that, Nicky and Mary Jo decided that they wanted different things in life and they parted ways very amicably. That's when Nicky and I became a couple. So it wasn't till 1983 that those initial sparks, dampened for 10 years, ignited again.

Dr. Correa:
Then through the '80s, the early 2000s, you both enjoyed your careers and the arts together.

Mary Lou Falcone:
Well, it was interesting. I had had 10 years to start building my public relations career. Nicky had had those 10 years to become more celebrated than he even was when I met him. We were able to enjoy a lifestyle that was complimentary, diverse, and exciting through all of those decades that we were together.

Dr. Correa:
It sounds like there was a little bit of some nuances in there that sometimes you weren't always on the same page, but a fruitful relationship together.

Mary Lou Falcone:
That is true. Nicky was a wild man when I met him, when we got together. He was just a free spirit, completely free spirit. I was more buttoned up. I became a little wilder and he became a little bit more grounded as time went on. Our initial characteristics never left, but there was some meshing in synergy between us that actually complimented one another.

Dr. Correa:
In your book we get to share in some of the experiences of these great trips and experiences around the world that you two had together. But there was one trip particularly that you started to notice some differences in some challenges that Nicky was going through. What was it that happened that really drew your concern that maybe you both needed to go to the doctor?

Mary Lou Falcone:
In the fall of 2016, we were in Vienna. We were there for the Vienna Philharmonic. I was basically representing both Dudamel, who was the conductor of that New Year's concert, and the Vienna Philharmonic. We were having this lovely celebration of work and play together, which was typical of what we did.
One night I had noticed that Nicky was fatigued when we arrived in Vienna. One night we were to meet at a restaurant. It was a restaurant that we frequented, that Nicky knew well, which was one and a half blocks from our hotel, from where we were staying. I arrived a little bit before 8:00, at the appointed time. Our friends arrived. Two friends arrived at the same time. Nicky, who was always early, if not right on the dot, didn't appear. 45 minutes went by and I panicked. I thought, "Oh my goodness, this is so atypical. Something has happened."
I called where we were staying. No, he had left 45 minutes before, an hour before actually, to be there early. I didn't know what to do. My stomach was just churning. And so, I excused myself and I went out to the main thoroughfare towards St. Stephen's Cathedral, on the main drag. I don't know what I thought I was going to find. I mean it was like trying to find a needle in a haystack in Vienna.
Now the good news is that Nicky spoke German. So I knew that he could ask questions. But I didn't know what was happening. As I walked down towards St. Stephen's Cathedral, who should be walking toward me? Nicky. It was like the miracle of all time.
As he approached me, I looked into his eyes and what I saw was fear. That gave me pause. He said something in a really harsh tone, which he never used with me. He said, "You. You didn't give me the address. You didn't write it down." Indeed I didn't because I didn't think I had to. It was a place he knew, a place we'd been. He said, "I've been asking people along the way. 'Where is this restaurant?' And they've sent me east and west and north and south, and I couldn't find it. It's your fault."
My reaction was to go calm. Because of that fear that I saw, I knew something was amiss. I went very calm and I said, "Nicky, it is my bad. I am so sorry. Please forgive me." He calmed a bit. We went to the dinner. Everybody was thrilled to see him safe. It wasn't the most pleasant of all dinners, but he was safe, and that's all that mattered.
Also, on that trip, there was a point on New Year's Eve when he was going down the steps of a hotel and I thought he tripped. He actually blacked out. He told me later that that was the case. When he came to, it was business as usual and on we went.
Those two things followed by ... We extended the trip and went to Paris right after that. There he had, unbeknownst to him and to me, what appeared to be a heart attack. But we didn't know it was a heart attack. It was the middle of the night. He was profusely sweating and chilled and felt a heaviness, but by morning he was fine. So we thought nothing of it.
But Nicky being diligent used to go for physicals twice a year. At this point he was 72, 73 years old and was doing this twice-a-year physical. We got back to the States and he went for his general physical. It was late January of 2017, so the following month.
At the physical, he said to our doctor, "And, by the way, what happened to that calcium score test you had me take six months ago?" The doctor looked it up, went totally white, and said, "Oh my goodness. Nicky, we need to get you a cardiologist now." Evidently the numbers were off the charts. Nobody flagged it. They didn't see it. It was just there. He, Nicky, thought to ask about it and got the results.
He was sent for a stress test. The stress test showed that he had had a heart attack, and now I knew when that had been, and that he was going to be set up with a cardiologist, which he was immediately. That cardiologist, who was wonderful, said, "Look, it's probably just something that could be controlled by meds or stents at the most, but we need to do an angiogram."
And so, I did something that for 34 years I had said no to. I had said no to an invitation 34 years every year from Nicky to marry him. I said no because we had this great relationship. So why spoil something that's near on to perfect?
But this time I looked at Nicky. I just had this feeling, Daniel. I had this feeling that something was dramatically wrong. I said, "Nicky, why don't we get married?" He looked at me with his typical sense of humor, which was wicked, and said, "Well, listen, Mary Lou. I appreciate the invitation, but what's your hurry?" I laughed and I said, "Well, we have had a great relationship for 34 years. We're still very much in love. We're not getting any younger. And so, maybe it would be a decent idea." He actually said, "I'll think about it."
I said, "Well, can we at least go and get the marriage license?" And he agreed to that. We got the license, and on the 13th of February of 2017, we were married. Now we've been together 34 years, so this was the beginning of marriage.
After that, on the 14th ... And I'm fond of saying, doesn't everyone get their heart checked out on Valentine's Day? We were in the hospital for the angiogram. The angiogram came back showing that indeed he didn't need stents, he needed triple bypass surgery. They were going to send him home and I said, "Oh, no, you don't. You get your top surgeon in here now to look at these results and let him tell me we should go home." The surgeon looked at the results and said, "Oh, I'm going to change my schedule tomorrow and you'll be among the first in the morning." And so, on the 15th of February of 2017, Nicky had triple bypass surgery.
That was the beginning of the end because while the surgery was supposed to correct and make him stronger and get back his life and the cognitive abilities would come back, none of this happened. The hallucinations, which are pretty typical with the anesthesia that's used for bypass surgery, they never subsided.

Dr. Correa:
Those were new? When he experienced with the anesthesia, those were the first time at least that he described it for you?

Mary Lou Falcone:
Those were the first times, correct, correct. And they were brutal. I mean they were trips that were pretty horrendous. Evidently they continued, but he didn't tell me that they continued. After the surgery, he was still weak. He never regained his strength. He was losing weight. I was told, "Well, this happens. It takes a year to get everything back and running." Well, a year passed and it didn't happen.
And so, in changing physicians, which we did, we started a whole new trajectory. I suggested about a year and a half after the surgery that perhaps an MRI would be in order. Our doctor said, "Well, this could be age-related. Let's just wait and watch a little bit longer." As we waited and watched, we're now into the fall of 2018.
We go to Stockholm, Sweden and I'm there to do a major event, and Nicky can't find his way. He's with me because he's been invited as a guest. He can't find his way from the hotel concierge desk to our room. He can't find his way from our room to the breakfast room. He was weak. He would sleep all day. But in the evening, because he had harnessed all his energy all day, he would hop to ... And in medical terms they call it show timing, and he would absolutely be 100% Nicky at night.
When we got back to the States, I said, "MRI time, please." Our doctor being wonderful and open said, "Absolutely." The MRI, which was done in January of 2019, showed a phrase that I hate, age-appropriate deterioration. To me, that's nonsense for, "We have no idea." I said, "All right. What's next? Because this is good enough. Something's happening. I know it. I feel it. I see it. I need to know. Nicky needs to know. We need to know."
Our doctor, again, being a really phenomenal physician and humanitarian said, "Well, I'm sending you to another hospital." Now he was part of Sinai. He sent us to Columbia Presbyterian Hospital, where he said he knew the best neurologist possible. We went to the neurologist. The neurologist did a cognitive test, just a normal cognitive test, watched Nicky walk. At the end of which, he said, not hesitating, "This is Lewy body dementia with Parkinsonian aspects."
Now, for your listeners, why that's so startling is that people who ultimately are diagnosed with Lewy body dementia spend sometimes years trying to get that diagnosis, and we got it right out of the gate. It was amazing.
They then did two more tests, a DaTscan, D-A-T, which is a more advanced type of MRI. They did a REM sleep test, because with Lewy body, unlike Alzheimer's, with Lewy body, you act out your dreams very often. It's not always ... Again, I keep doing these caveats because it's not a one-size-fits-all disease. But very often you will get REM sleep disorder, and that's when you're dreaming that you're punching the person next to you, but you're actually punching the person next to you. So you're acting out your dreams. That's a distinction between Alzheimer's and Lewy body.
Another distinction are the fluctuations. They're both neurodegenerative diseases. They both have cognitive decline. With Lewy body, you keep fluctuating back. So it's in and out of lucidity. One day you're 100% yourself. The next day you don't know who the person standing next to you is. This goes back and forth. Those are the major differences between the two diseases.
So here was Nicky with Lewy body dementia, with Parkinson's also, and he knew what it was. We got out of the waiting room and he looked at me and he said, "I know what this is." And three things he mentioned. One is, "I want to see your father. I've never had the privilege of meeting him. I know that now I will have the honor of meeting your father," meaning that he knew he was dying. My father died in 1981.
The second thing he said was, "We have had a great run. We cannot be sad." That's a mantra that I live by every day. The third, which is so important for all caregivers to hear, which is, "Please help me to keep my dignity." That's an enormous responsibility, but one that I think is so important to remember and try to achieve

Dr. Correa:
From those requests and questions, or even from the time that you had managing the condition with Nicky, what do you feel that you learned about life from him?

Mary Lou Falcone:
That is such a great question. I want to go back and answer that with a little bit of a story, if I may.

Dr. Correa:
Of course.

Mary Lou Falcone:
And that is that when I was 10 years old, my father had a massive stroke. He fought to live and he lived, but he never spoke again for the rest of his life. He was 37 years old. He died when he was 64. And so, that's a long time to not have words at your disposal. But he communicated in other ways, with looks, with underlining things, sometimes writing very slowly.
But he also had a lot of therapy. We were very fortunate, we had a very fine rehab center very near to us. Unfortunately, though, after two years of the insurance money running out, they said at the rehab center, "You have a very bright now 11-year-old and she can work with you." That would be me. So I was the caregiver for my dad and for my two younger siblings, and I then took on the responsibility of helping with speech therapy for my father.
Now you may say, "Well, where was your mom in all of this?" She was out holding three jobs down to keep the family together, and that was more than a full-time situation. And so, I just stepped up to the plate. Nobody asked me to, but you do what you have to do. I was the caregiver and the speech therapist.
Now what I learned from that is what not to do. And so, a child thinks, "I can make this happen. I can make my dad speak. I can really be the catalyst for helping this situation." What I didn't know as an 11-year-old, and what the doctors didn't know at that time, nor did the therapists, was that the damage was so extensive in my father's brain that there was no rehabilitating anything because there was nothing to rehabilitate. Therefore, it was an exercise in great futility and great emotional stress.
My dad was so patient, the most patient person I've ever met in my life, and I wasn't. And so, we fast forward to Nicky's illness and what I learned. What I learned was patience. I learned that I couldn't control everything. I learned to go with the moment. I learned to appreciate those beautiful moments when Nicky was back and we were together again. I learned to accept the moments when he left.
So I learned a lot. I guess what I learned overall was that when I needed help, instead of being stoic and being the in-charge person, I learned to ask for help along the way, because every caregiver needs help. We can't do this alone. It's impossible. Asking for help was not in my wheelhouse. I could do it all, but I couldn't.

Dr. Correa:
Some of our listeners may not be as aware that speech language therapy, or some of the rehab that Mary Lou was sharing with us, is very closely connected also to speech and the use of your voice and music. And so, in a way, as challenging as it was to be there and help and support your father, even though he wasn't going to get his voice back, it sounded like, through that time and through the learning that you had, you learned the power of your own voice and a connection to music. I think that may be very possibly related to your path later.

Mary Lou Falcone:
Absolutely. What I learned was that, emotionally, I couldn't speak about what was happening. It was an Italian American family and it was in the 1950s. What you didn't do is you didn't take what was happening within the house out of the house. You dealt as a family, but you didn't bring other people into the mix.
And so, emotionally, I couldn't talk about it. I didn't tell my teachers, I didn't tell my friends, I just didn't talk about it. But I discovered that when I sang, I would have a tendency to look out and see the adults in the room with tears streaming down their faces. I thought, "Oh, this is wonderful because I can express exactly what I'm feeling through singing, but I'm not violating any family confidences. I'm not telling stories out of the house. But I am emotionally releasing what I need to release."
That put me on the music path so that I did, mercifully and very gratefully, win a scholarship to a music school, a very fine music school where I was beautifully trained, and then could continue with the music as a release for my emotional life. Then I could begin speaking about it on behalf of other artists as a way of communicating as well.
So communication, what my dad's illness taught me was the communication was vital, and I knew I needed to communicate. It didn't matter how I did it, I just needed to communicate.
We fast forward to Nicky, and his ability to communicate became limited. And so, one had to read the signs, one had to anticipate, but I'd already been there. I'd already done that as a child. So now I had that equipment meshed with an adult's brain, and I could compute pretty wisely this time, and empathetically as well as sympathetically.

Dr. Correa:
Then through that time and experience, you and Nicky learned, or you learned from the situation, on how to ask for help and how to build a community and supporting together. I'm wondering, what did you learn about dementia with Lewy body and living with as a care partner and a family dementia from others, living through the experience and other caregivers?

Mary Lou Falcone:
First I had to find a support group. Finding out about the disease was very, very difficult. It's why I wrote the book I Didn't See It Coming: Scenes of Love, Loss, and Lewy Body Dementia. I wrote it as an homage to Nicky, but I also wrote it as a tool for caregivers, so that they would know they're not alone and they would see the aspects of what needed to be done along the way.
In terms of the caregiving, what I needed was to find support. Through the actor David Hyde Pierce, who introduced me to an organization called CaringKind, they in turn introduced me to the Lewy Body Dementia Resource Center run by a phenomenal woman whose name is Norma Loeb. Norma runs support groups for caregivers, she runs support groups now for people with Lewy body, and she is a walking miracle in my opinion.
And so, I joined the Lewy Body Dementia Resource Center care group. From those people, I learned I wasn't alone. I learned to be able to articulate what was going on in terms of the malfunctioning of the body, the malfunctioning of the brain, the incredible situations that one found oneself in that you never ever anticipated or thought or saw coming.
People spoke very openly, very honestly, very candidly because they knew that those in the group experienced or were experiencing the same things. It was a lifeline. You can bring in friends, but when you bring in friends, you also have a responsibility to ... And I don't mean this pedantically, but to educate your friends what to do, what not to do. There are do's and don'ts.
For instance, if you're sitting as a foursome having a nice lunch and Nicky wasn't able to finish a sentence, for instance, it was really important that somebody not jump in and try to finish that sentence. It's important to allow it to either just be or I would come in with a helpful word, or we'd go on to another topic. These are things that as helpful, wonderful friends, you want to jump in, you want to help, or you want to say something like, "Oh, Nicky, don't worry about it. That happens to me all the time."
Well, for a person with Lewy body, hearing, "That happens to me all the time," it's a feeling of dismissal. People with Lewy body hate that. They actually bristle and would get angry at that.
So I, in being a thoughtful, hopefully, and helpful caregiver, would help educate those people who were coming into our sphere, who are wanting to be there to be helpful. What I will also say is that there are some people who can't join you, and that's hard to accept at the beginning. But when you realize that they just can't go there, you have to let it go. You cannot wish for it or hope for it or try to legislate it because it won't work.

Dr. Correa:
How do you think we can support more care partners early on and throughout this journey?

Mary Lou Falcone:
I think it's by listening and responding honestly. I mentioned our neurologist who is a genius at diagnosis. I will also say that he was one of the most closed off, non-giving people I've ever met in my life. And so, when I would go to appointments and I'd ask questions because I needed to know, he would shut down. I thought maybe it was because Nicky was in the room. So I would ask Nicky to leave the room, and then I'd go back to the questions.
And he would answer not one question, gave me no support, didn't tell me where I could find help. All he said was, "You'll find out more from people who've been dealing with the disease than you will from anyone else." Well, thank you very much, but that's not very helpful.
So now I'm finding younger physicians who are reaching out to me and saying, "Will you join us? Will you come to our symposium and talk about the caregiving aspect of what's going on?" The answer is, "Yes, with the greatest of pleasure," because I think the physicians are realizing, and I hope more will realize, that the medical diagnosis is vital, of course, that the treatment, as far as it can go, is limited, and we know that. The research is important and vital. But the voice of the caregiver and what that caregiver can share and bring to other caregivers is vital.

Dr. Correa:
It's the all-helpful lessons and experiences and the perspectives. Now every single one of our listeners, we hope for them ... And we all often are listening and thinking about our own brain health and improving how we live with our current conditions. We hope that we all have the privilege of time and aging and a love like yours and Nicky's. What have you learned about how you want to approach your own aging in the coming years?

Mary Lou Falcone:
Oh, that is a brilliant question that no one has ever asked. I feel that as long as I've been given the gift of good health and good brain health, that I have a responsibility to give back. My giving back is by going and speaking and lecturing about Lewy body dementia, about dementia in general, and how caregivers can be helped.
So, personally, I try to exercise. I try to keep a diet that is ... I wouldn't say sugar-free because I'm not that good, but I do keep it at minimal amount of sugar in the diet. Healthy eating in general.
I also do a lot of word games. Now I don't get out of bed in the morning without doing New York Times Wordle and a whole bunch of other word games, just because I think that it just is ... It stimulates. Reading, listening to podcasts, being active with friends, going out and making sure you have enough of a social life that doesn't burn you out, but that keeps you stimulated. If something isn't stimulating, don't do it if you don't have to. But keep stimulated and keep people around you. Keep younger people around you also. My friends are in their 20s, 30s, 40s, 50s, 60s, 70s, 80s, and 90s because I like the mix. I like the thinking of a variety of generations.

Dr. Correa:
I love it. I love it. I love the friendships across the spectrum. Mary Lou, thank you so much for joining us today, but for all that you've done over the years to bring us not just musical voices, but empowering the voices of the community, and to share your own story and your own voice.

Mary Lou Falcone:
Thank you very much, Daniel, for this opportunity.

Dr. Correa:
Now, for our listeners, stay tuned. We're going to continue our discussion with a medical expert to learn more about dementia with Lewy body disease, about different resources out there in the community. We hope you enjoy our discussion.
Can't get enough of the Brain & Life Podcast? Keep the conversation going on social media when you follow at NeuroDrCorrea and at Brain & Life Mag or visit brainandlife.org.
We're back. That was a really touching discussion with Mary. Mary Lou shared with us her own life story, her story together with her husband Nicky Zann, a little bit about his experience as an artist and musician in New York City, and then when he started to have symptoms of Lewy body dementia, how it impacted their lives, how it impacted them as his condition evolved, and, unfortunately, when he passed away.
Now she mentioned to us a doctor that she worked with and I was glad to hear. It's a doctor that I work with actually also in the Bronx at Montefiore and Albert Einstein College of Medicine. I'd like to introduce you all to Dr. Jason Cohen. He's a neurologist and a dementia specialist who helps support and care for individuals and families that are going through these different neurodegenerative conditions like Lewy body dementia. Thank you so much, Jason, for joining us.

Dr. Cohen:
Oh, thank you so much for having me, Daniel. Really appreciate the opportunity.

Dr. Correa:
So Mary Lou mentioned that she knows you. How is it that you came to meet her and know her and get involved with some of the same work and advocacy work that she's been doing?

Dr. Cohen:
So I know her through the Lewy Body Dementia Resource Center. So there are a number of groups that help people with different types of dementia and memory or thinking problems around the country. This one I got involved with because they're very, very patient and caregiver-centered. They do a lot of great work, a lot of great advocacy. I had the opportunity and jumped on it.
So I've gotten to do a lot of different work through them, including recording different videos about all the different symptoms of Lewy body, working on them on some of their advocacy and outreach efforts, their education efforts. So anything we could do to spread the word about this condition.

Dr. Correa:
I'm glad we can join that effort and help bring more awareness and attention and understanding to it. Now our listeners may recall, we've had several different episodes on different types of dementias, including one of the most common being Alzheimer's dementia. We've also mentioned how stroke and other vascular issues might result in something called vascular dementia. But for this condition, Lewy body dementia, Jason, can you briefly explain for our listeners what it is and how it differs from some of the other forms of dementia?

Dr. Cohen:
Mm-hmm. So, as you mentioned, so dementia is this umbrella term. It's not one disease, it's this giant category that says, well, your thinking, your memory, some sort of thing like that is not as good as it used to be to the point where it gets in the way of you doing your day-to-day activities.
So, again, it's not one disease, it's a whole category. Under that, the most common type is Alzheimer in the US, or vascular or stroke related. But the number three type or number two type, depending on how you want to count it, is this thing called Lewy body. I like to say it's the most common kind of brain disease or dementia that no one's ever heard of, even though there's almost a million and a half people with it right now in the US.
There are a number of different symptoms that people have. Not everyone has all of the symptoms. But some of the most common things that people with this Lewy body disease have are hallucinations, so especially seeing things, seeing things that aren't really there, often small people, animals.
People have very slowed thinking or slowed processing. It just takes them a little bit longer to think about stuff or remember stuff compared to before. That's in contrast to something like an Alzheimer disease. Usually Alzheimer, people who have Alzheimer have a hard time making new memories. If you give someone a hint and a reminder, I never made that memory in the first place so I'm not necessarily going to remember it.
But my thinking speed is okay as opposed to someone who has Lewy body where the thinking just isn't as quick. It just takes a little bit more effort. But a lot of the time you can give someone a hint, a reminder, a calendar, and often, "Oh, that's right. That's right," and the memory can come back. So hallucinations is one big piece, the slowed thinking and slowed processing. Some people have a hard time seeing things that are in front of them, judging distances, seeing where things are.

Dr. Correa:
So what are some of the things that differentiate those symptoms as maybe being more related with Lewy body dementia from some of the other medical conditions or other dementias with similar symptoms?

Dr. Cohen:
Right. So that's a great point. Most of the symptoms by themselves are not very, very specific. So each individual symptom, you can get in many, many different diseases. But when you put the pattern together, that's where we can say, "Ah, this is something different. This is something new." Actually that's one of the reasons why it could be quite challenging for many people to get a diagnosis early on, especially for people where the symptoms are less specific. You say, "Well, oh, that slowed thinking could have many different causes. That shaking by itself could have many different causes," and really until the person develops other symptoms, sometimes it's challenging to put it together in terms of things that are a little bit more specific.
So the person who is having movements in their dreams, they're reenacting their dreams, punching, kicking, yelling, screaming in their dreams, that's a little bit more specific either to this thing called Lewy body or some of the related diseases, some of the diseases in the same family, like Parkinson disease or this other condition called MSA or multiple-system atrophy. But those types of movements, while they can be seen elsewhere, are much more common in Lewy body and things in the Lewy body family.
Most of the others, as you mentioned, by themselves could be seen with so many other conditions. The hallucinations we can see in people who have Alzheimer, people who've had stroke, but they are much more common in those who have Lewy. Usually it's seeing. You can also have auditory hallucinations. You can also hear things. You can also rarely smell things. You can have other types of changes in your mood. Some people get very anxious or depressed. Some people have paranoia or delusions. But, again, all of these can occur in many, many different diseases. So we do need the pattern in order to figure out what it is.

Dr. Correa:
So it's not any of these individual symptoms, as you said. It's the pattern, and sometimes together. As doctors or when we're explaining these things to people, we describe that the pattern together of various different conditions as being the syndrome. And so, that's how that concept comes together.

Dr. Cohen:
One of the other challenging things is many people with Lewy have what we call fluctuations. So everyone's going to have good day, bad day, everyone, "Oh, I didn't happen to sleep the night before and I'm a little sluggish today." People who have Lewy often have really profound changes, ups and downs in their thinking. It could be minute-to-minute, hour-to-hour. That's not just good day, bad day.
So sometimes you walk out of the room and the spouse is going, "Wow, I haven't seen you look that good in a couple of weeks," and you looked great just for that hour, and the doctor didn't see all of those symptoms. And so, one, that's actually a unique feature of Lewy, but sometimes that makes it even more challenging for the diagnosis. Sometimes it's actually a source of frustration for families or for caregivers in that people can sometimes look very, very different moment-to-moment. And so, that can also sometimes make this a little bit more challenging to pin down.

Dr. Correa:
Let's go into one of those examples. So you brought up how some of the symptoms can overlap with a related condition called Parkinson's disease. For our listeners, we've had several episodes about different aspects of Parkinson's disease. If you're interested in that, please go back and check those out.
But when you are interviewing and discussing what's going on with a person and their family, whether it's the symptoms or everything else that's going on, what are some things that clue you to differentiate that it's maybe not Parkinson's and it's more likely Lewy body dementia?

Dr. Cohen:
So Parkinson's and Lewy are two ends of a spectrum. Some people call them one disease, some people call them different diseases. It doesn't necessarily matter. They're both related. They're close cousins.
We usually think of Lewy as the person who starts with thinking and memory changes or maybe starts with hallucinations, and then later on may or may not ever have the things that we normally call Parkinson or Parkinsonism. So the shaking and the shuffling of the feet and bending over a little bit in a stooped posture when walking.
Some people with Lewy actually never get any of those symptoms or have them only very, very minimally. But for the majority of people with Lewy, eventually you'll get some of those or many of those, whereas people who have Parkinson, typically you're starting off with some tremor or shaking. You're starting off with some changes in the walking. Then, later on, eventually the majority of people will have some sort of changes in their thinking.
So if you start off with shaking, walking, the motor, the movement side of things, then we usually call it Parkinson. If you start off with the thinking and focusing, we call it Lewy. In the research world, we have this arbitrary line in the sand. If you're shaking for one year and a day before you have your thinking, then we're going to call it Parkinson. If you have ... It is less than a year and a day, we call it Lewy.
For the individual person, I say, "Don't worry about it. If the thing that bothers you and that bothers your family and your friends and your caregivers the most is the thinking, we're going to call it Lewy. If the thing that bothers you the most is the moving, shaking, we're going to call it Parkinson". But really that's just a shorthand for what are the symptoms that I want to make sure that I am giving the most weight to, that I'm trying the hardest to address? Because sometimes trying to help one thing will make other stuff worse.
So what matters most, right? What is the thing that is bothering you the most and how do I help your quality of life the most? I'm going to just name it based on that, and I don't worry as much about what label I happen to give.

Dr. Correa:
We've mentioned how we're putting this in a way in a spectrum and with different names on one end or the other, and how different aspects of the different symptoms can be very related and sometimes a little bit different. What is it that we know? Can you go into what we know and understand about what's going on in the brain that makes these two conditions related? What do we know that's a little bit more different between the two?

Dr. Cohen:
So in the brain, there's this protein, this thing called alpha-synuclein. When it's not folded up and not in the right way, then it can come up the works. Exactly how that works, exactly what this chemical alpha-synuclein is doing in people's brains normally, there's a little bit of ambiguity there. It is not entirely clear. But we know that as this chemical, as this protein is present in a non-normal way in people's brains, depending on exactly where in the brain it is and how it spreads, that pattern will tell you, is this more of a Lewy pattern or is this more of a Parkinson pattern?
I should say it's actually not just the brain. We know that it could also be found in the skin and it can be found in other parts of the body as well. We think that that's actually related to some of the other symptoms that people get, that might be related to some of the dizziness that people get, that might be related to some of the constipation that a lot of people get.
So even though we think about these as brain diseases, they're more than happy to make the acquaintance of all of the nerves in all of the parts of your body and can cause problems in a variety of places.

Dr. Correa:
That's an important context and reality for us as doctors to discuss and for people in the community to be aware of, that we're not just talking about the thinking and the movement and that these things impact so much more of their life, because it gives a credence to the fact that they're experiencing this. But if it's not really shared that it's part of a condition, they may feel alone in that way.

Dr. Cohen:
Right. Also, the other piece is that people don't necessarily relate. "Oh, by the way, this is the worst constipation I've ever had." Well, that's actually part of your Lewy or part of your Parkinson, and we should make sure we're talking about that. "By the way, every time I get up, I'm getting a little bit dizzy or lightheaded," "By the way, I'm having these other challenges," and people might not think to relate them all, but because these diseases affect so much of our bodies, they can cause problems everywhere. So as long as we think broadly, we're more likely to be able to help people with a lot of the challenges that they face.

Dr. Correa:
Before we go on into some of the other ways that these two conditions, and particularly Lewy body dementia, affects people and their families, I wanted to go back to a little bit about what we understand about causes and risks. So we know that with Parkinson's disease, there are some genetic causes. We know that there's also some environmental risks that might lead to someone getting ... Or be associated with someone getting Parkinson's. What do we know about that with Lewy body dementia? Do you need one of those to be a cause, or what are the other possible causes or risks?

Dr. Cohen:
So we know a lot more about this in the Parkinson world than we know about the Lewy world. So we don't really know as much about the environmental risks in Lewy body. Genetics is quite rare. So in an Ashkenazi Jewish or Eastern European population, it's a few percent risk of this being in the family or hereditary. But outside of that, it is quite rare. It's not zero. We used to think it was close to zero, it's not, but it's very uncommon. It's single-digit percent or less, less than a percent. But we have a lot to learn.

Dr. Correa:
It's good to know that we're expanding and understanding our knowledge and understanding about its related spectrum or cousin, Parkinson's, but it seems like we need a lot more research for Lewy body dementia to understand some of those risks and differentiate it from the spectrum of Parkinson's.
In Nicky's story that Mary shared with us, Mary Lou shared that he had issues with finding his way around a city that they were visiting and just his speed of processing and understanding instructions. Very soon and around that time also is when they started to notice that he was having visual hallucinations. So it seems to fit that way. For him, very quickly after he got to see a neurologist, they were able to put that pattern together.
I'm wondering, of the groups of possible early symptoms, is there one type of group that seems to get a delay in how quickly it gets figured out what's going on for them? Is there one type of set of symptoms that seems to confuse the hospital or the health system a little more than the others?

Dr. Cohen:
Wonderful question. So people who have the hallucinations and the mood symptoms first often have the most challenges at getting a diagnosis as quickly as we like. The people who start off with those big fluctuations, the big ups and downs, the first time maybe you worry, did this person have a stroke? Maybe this person had a seizure. Maybe this person has what's called delirium. By the second time it happens, the third time it happens, you say, "Wait a minute. Maybe there's something else here."
In the brain itself, actually there are some very interesting links with delirium and Lewy body, and some of the same brain regions that have changes in how they're working actually seem to be affected. And so, we're using Lewy body and delirium, this typically short-term confusion that we can see in a whole host of any sort of medical condition, everything from someone is sick in the intensive care unit with a heart attack or COVID or pneumonia. You can have a temporary alteration in brain function called delirium.
We're actually using delirium to learn more about Lewy and the reverse, just because there are some similar brain regions involved. So by and large, the people who start off with what you can call psychiatric symptoms, psychiatry and neurology, it's the same brain, it's just different perspective or different historical baggage, if you will. For some of the people with those symptoms first, it does take longer to get a diagnosis.

Dr. Correa:
And so, I wanted ... You were starting to mention a little bit about where we are with some of the science, in understanding a few of the aspects about Lewy body dementia. We talked about before, we already know that we need a lot more of science and research to help us understand the risks factors and causes that differentiate Lewy body dementia from some of the others. But where are we with the current state of research with all the other many aspects about Lewy body dementia?

Dr. Cohen:
So we're making a lot of progress. We've got a long way to go. The first part of that progress, though, is awareness, because no one is ever going to fund research for a disease they've never heard of. No one is going to ever volunteer to be part of a research study if they don't have the right diagnosis.
So the first part is awareness and advocacy. And so, one of the reasons I'm so glad you guys have me on today and Mary Lou on is you're never going to make progress if we don't know what it is. And so, in my mind, some of the most important advances in the Lewy body field are actually ... Besides the advocacy and the education are in diagnosis. We are getting better and better over time with some of these other tests because some people have very, very, what you could call classic symptoms. You see the pattern, you understand what it is easy, or relatively.
But other people, when you have symptoms that are very not specific, when symptoms are overlapping, when they have other medical problems that could be at least partial explanations for everything you're seeing, it could be helpful to use our other tests.
Right now, 2024, we don't have a blood test for this. We can't see this on an MRI or a CAT scan, but there is a type of brain scan called a SPECT scan or a DaTscan that can be very helpful. We know it's not perfect. It doesn't capture everyone who has it and it misses some people who do have it, but that can be helpful.
There's increasing work on a cardiac or a heart scan that can detect people who have this Lewy body. Some of the biggest work has been on thinking about blood tests, but the thing that's the closest to prime time to being used now is a skin biopsy, because we know that this condition affects not just the nerves in your brain but can affect throughout the whole body. There is a skin test that is increasingly being used.
I should note that it is not yet approved for use in New York, but in much of the rest of the country, this is approved for use. This is something that I've been told has been put before the New York State Department of Health. So at some point we will be able to use this in New York. You can apply for a waiver otherwise.
But it's three very, very tiny skin biopsies, so tiny little bit of skin about the size of a pen point or a pencil point. Then that has very, very good accuracy to detect these changes that we could say are Lewy body.
So that's, I think, the part of the research field that I'm most excited in is being able to get people better, more accurate answers. Once doctors and other healthcare professionals know what this thing is more, and once patients are empowered and have more education and awareness, and once we have better blood tests, then I think it's much easier to make advances in everything else.

Dr. Correa:
Yeah. I think we all, of course, want and are seeking that stage when we have treatments to help slow things down, to treat many more of the symptoms that are targeted towards those causes and what's going on, and ideally that future where we have a cure or a way of identifying the cause and preventing any of the symptoms ever showing up. But to get there, I think like you were mentioning, we need accuracy and awareness and diagnosis. This skin test is great to hear about.
Now we talked about how Lewy body dementia is on a spectrum with other Parkinson's diseases and Parkinsonisms. Does the skin test differentiate between Parkinson's and Lewy body dementia, or does it give us the accuracy to say, "Oh, you're definitely in this category"? Again, we're back to the symptoms that make that separation.

Dr. Cohen:
Yeah. The skin tests, like the other tests that we have that ... What's called a SPECT scan or DaTscan, the heart scan, they really tell us the category without telling us which item within the category, which disease within the category. For the healthcare professionals, depending on the setting where you see people, that might be not sufficient. But if you are seeing someone with specific symptoms ... It all goes back to the person or the patient.
So in the context of changes in thinking and hallucinations, even if the test itself doesn't tell me which item within that category it is, I have the person in front of me. So I talk to the person. I think for our purposes, that works well enough. In the future, hopefully we have something a little bit more targeted, but I'm not going to worry about that for right now.

Dr. Correa:
Well, that's helpful and good to know. While we were on it, we mentioned this skin test. With Parkinson's disease and Lewy body dementia, there's a really important aspect about risk and skin conditions that we should make sure to highlight for everyone in the community who's aware or know someone with one of these conditions. Can you make sure to help us touch on that?

Dr. Cohen:
Yeah. So we know there are a lot of changes in the skin in people who have Lewy body and who have Parkinson's. So good skincare is important. In some people, it actually becomes even more important.
One of the treatments that we can get to in a minute, one of the medicines that we use often is a patch. Sometimes the main cause of people having difficulty using the patch is either skin irritation or the patch isn't sticking. And so, good skincare, we don't normally think about as neurologists, but making sure we're taking care of the whole person and making sure that their skin is taken care of. All of a sudden it means that the therapy, the medicine that we have works that much better and it's that much easier for a patient. So we've got to think about the skin, too.

Dr. Correa:
What are some of the resources that are out there for people to learn more about dementia with Lewy bodies or Lewy body dementia?

Dr. Cohen:
So there are two organizations that are more specific to Lewy body. They're both fantastic, slightly different styles. So I encourage patients, families, caregivers, take a look at both, see which one has the things that are the best fit for you at the moment. One is called the Lewy Body Dementia Association. One that I do a little bit more work with is the Lewy Body Resource Center.
I would mention, the Lewy Body Resource Center, right now we have a webpage in eight different languages. As hard as it is for people to get information about some of these conditions in English, people who speak other languages from other backgrounds sometimes is even more challenging. So we do have eight different languages on the website right now.
There are also Lewy body, for example, Lewy body societies in Spain and some other countries. So there are some resources in other languages out there, but it's very limited. So we're working on expanding the different language options.
In addition on the Lewy Body Resource Center, we have two and a half hours' worth of videos going through almost all of the different symptoms, interviews with patients, with doctors, caregivers. They have five different support groups and there are a number of other resources on both the Lewy Body Resource Center and the Lewy Body Association. There's information about different research studies. I think sometimes the Lewy Body Association might have a slight ... Not advantage, but they might have more links to research studies the last I checked.
Then aside from the Lewy body-specific groups, there's a group called the Alzheimer Association. Even though Alzheimer is in the name, they frankly do not care. They work with people with all kinds of dementia and cognitive challenges and changes. And so, they're also a good resource.

Dr. Correa:
As much as we're trying to help other people learn and become more aware about living with different neurologic conditions and symptoms, Jason, what have you learned from the families and the people that you care for?

Dr. Cohen:
How much time do we have? So there's always more to learn, and whether it's different symptoms, different presentations of the symptoms, different ways that people have come up with to help manage some of the symptoms, different strategies. And so, I'm learning on a daily basis from our patients and families. Everyone is contributing and, "Oh, actually I saw someone who had similar things yesterday. Have you tried A, B, and C?"

Dr. Correa:
That's amazing. That's great.

Dr. Cohen:
And so, it's helpful to be able to take what I learned from you and give it back to the next person.

Dr. Correa:
Is there something that you've learned from them and their families about how they're managing things that you've changed and incorporated into your own life or relationships?

Dr. Cohen:
I think some of the caregiver support is always important. Even if you know something academically, it's one thing to understand the textbook and it's another thing to implement it. There's really no substitute for human connection and human support. And so, I think that's one.
The other I've heard more than a couple of times, "I waited until I retired to ... ," "I waited until ... " So making the time to do some of those other things now and not wait until I think is something that has been emphasized to me by more than a few families and patients. So I've been trying to take that to heart as well.

Dr. Correa:
Thank you for making the time to meet with us, to help us bring more awareness about the condition, but particularly to make the time that you do to support the families and the caregivers. Really, they often are the greatest experts in living with these conditions.

Dr. Cohen:
Yeah. Thank you again so much for having me. I very much appreciate the opportunity to be here.

Dr. Correa:
Thank you again for joining us today on the Brain & Life Podcast. Follow and subscribe to this podcast so you don't miss our weekly episodes. You can also sign up to receive the Brain and Life Magazine for free at brainandlife.org. Don't forget about Brain & Life en Espanol.

Dr. Peters:
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Dr. Correa:
You can also find that information in our show notes, and you can follow Katy and me and the Brain and Life Magazine on many of your preferred social media channels. We're your hosts, Dr. Daniel Correa connecting with you from New York City and online at NeuroDrCorrea.

Dr. Peters:
And Dr. Katy Peters joining you from Durham, North Carolina and online at KatyPetersMDPhD.

Dr. Correa:
Most importantly, thank you and all of our community members that trust us with their health and everyone living with neurologic conditions.

Dr. Peters:
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Leaving a Legacy of Love and Care with Mary Lou Falcone

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