WKCR: Love in the Name of Alzheimer’s

ScottRussell

Love in the Name of Alzheimer’s was the second of a four-part, summer-long series of multiple-part episodes of The Best Medicine on WKCR-FM.

“Giving another human being dignity is purposeful,” says Meryl Comer, “it gives you a calmness, and — although it’s very, very difficult — a sense, that’s where you are meant to be.” The Emmy-winning television journalist, and author of a memoir of her husband’s developing Alzheimer’s disease, joins a young filmmaker and doctor teaming up to educate the public on brain health, a neuroscientist leading research toward new treatments, and a patient who — humorfully — describes Alzheimer’s from within. What does Alzheimer’s teach us about radically caring for each other — and embracing the transitory nature of mental clarity?

Transcript of Part I:

Erik Campano: I’m Erik Campano. On this program, we’ll speak with people who have experienced Alzheimer’s disease from a number of different perspectives: Meryl Comer is an Emmy award-winning television producer and author who is also an Alzheimer’s caretaker and nationally-prominent advocate for Alzheimer’s patients and their loved-ones; Max Lugavere and Richard Isaacson, MD are working together on a documentary film, called Bread Head, and prevention clinic for young people, to help them reduce their risk of developing Alzheimer’s later in life; Scott Russell is an individual with Alzheimer’s, who speaks publicly about the experience of the disease from within, and also makes and sells stuffed animals to fund Alzheimer’s research; Dr. Stephen Ginsberg is a neuroscientist at the forefront of the biology and treatment of Alzheimer’s; and Jed Levine has decades of experience as Executive Vice President of the New York City chapter of the Alzheimer’s Association.

From WKCR 89.9 FM and WKCR HD-1 Columbia University, this is The Best Medicine: Healthcare and humanity, one story at a time, a radio show and podcast that uses storytelling to shed light on medical conditions through a new prism: not only as biological science, but as a shared human experience, a source of compassion, and a well of hope. Now: Love in the Name of Alzheimer’s, Part I.

Alzheimer’s disease is a chronic dysfunction of the nervous system that usually starts slowly and gets worse over time. The most common early symptom is difficulty in remembering recent events. As the disease advances, symptoms can include problems with language, disorientation, mood swings, loss of motivation, the inability to care for oneself, and behavioral changes. Gradually, Alzheimer’s patients can lose their bodily functions, and this ultimately can lead to death. The average life expectancy following diagnosis is three to nine years, and as a person’s condition declines, she or he often withdraws from family and society. The United States census estimates that nearly half of people above the age of 84 have Alzheimer’s disease. Therefore, with our aging population, Alzheimer’s raises important questions about what it means for human beings to care radically for one another, and also about embracing the transitory nature of mental clarity.

On a beautiful bright Sunday in Bryant Park, in the middle of Manhattan, we asked visitors from all over the world about their experiences with Alzheimer’s.

Man: My grandfather suffered from Alzheimer’s before passing away. I mean, I don’t know much about the illness medically speaking but I think it’s one of the cruelest illnesses that someone can suffer from and a family has to deal with.

Woman: I, I always thought of Alzheimer’s as you were forgetting, you weren’t remembering thoughts, or people, or memories, and I didn’t realize it could also affect motor skills. That was something, I think, I learned from your grandfather: forgetting how to pick up a spoon to eat.

Man: Yeah, I mean for my grandfather it was kind of the motor skills that went first and still had a lot of memory of family and experiences. He was trying out new medication that worked wonders for a few years before he finally passed, and it was all of a sudden he came back for a few years, whereas he had been progressing for a long time, just forgetting who we were, and all of a sudden all of his memories came rushing back and it was a wonderful relapse of memory.

Woman: Yeah he went from thinking it was 2004 to 2011. He would normally contribute to the conversation, it would be a conversation, to where it just became, he was a good listener, he didn’t really speak back, but he was there. He wouldn’t be able to get up easily from a chair, but he would know who was sitting at every spot at the table.

Man: It was knowing that when he took this medication, he would kind of open up for a few hours and how it almost felt like he had this barrier around him, this cloudy barrier, where he couldn’t break out of, and, so those moments when we had together were just wonderful, and just realizing he still is my grandfather behind this terrible disease, and, yeah, I guess how fragile your ability to put thoughts together is.

Campano: Meryl Comer is an Emmy award-winning TV producer, who, for 18 years, hosted a nationally syndicated debate show called It’s Your Business. In 1996, doctors diagnosed her husband with Alzheimer’s, and her life changed profoundly as she moved into a caretaker role for him. She has since become the President and CEO of the Geoffrey Beene Foundation Alzheimer’s Initiative, as well as written a book, about her Alzheimer’s experiences, named Slow Dancing With A Stranger. We had the chance to speak with Meryl Comer during a presentation of her work in Larchmont, New York.

There’s a moment in your book where you talk about, where you’re feeding your husband, and you’re imagining the taste of the juice being sweet, and you’re imagining that he’s feeling the pleasure of the juice, but you don’t now that he is experiencing that. And that moment among many others in the book was particularly poignant because it got right to the heart of what seems to be a lot of the subjective experience of the caretaker of Alzheimer’s is. You have to find some way to try to put yourself in the experience of this person, wherein their experience is so radically different from your own. I’d like to hear you sort of reflect upon how you have negotiated those moments as time goes on.

Meryl Comer: It’s over time, and you’re always searching for a way in, a connection, and you need to be with the loved one in the moment. In the early stages, you will have moments of clarity, and then they’re lost. So, it’s over years. I’ve been doing this now for twenty years, so I’m very attuned to a move, an eye movement. My husband hasn’t known who I am for about 12 years, but I know that he knows my touch. I can comfort him by my presence, and if that’s what it is, then that’s what we do, but you have to really pay attention, anticipate, and then go with the moment. You can’t write the book. You have to feel it, and it changes. It changes in the disease. At one point, I was my husband’s arch-enemy because my husband was in denial about the disease. He shadowed me because I was his point of reference for stability. So, it’s a very tricky disease in the early stages, and as it progresses it changes, so there’s no book that gives you all the answers.

Campano: In that period of denial, you went through very emotionally challenging periods, and you talk a little in the book about what sustained you through that, and what came out of it was that you were able to maintain some sort of connection with him, and commitment, and you talk at the end of the book about how your own notion of love was redefined. Can you elaborate on what you now understand about love, that you didn’t before then?

Comer: Well let me set a context for you. If you go back 20 years, Alzheimer’s disease was steep in stigma. It was never talked about. My husband was chief of Hem-Onc at NIH, a wonderful physician who never gave up on his patients. So, the commitment was there. He was a very difficult case, because he was young, and back in those days, the only way you could diagnose it was through autopsy. So, my husband had been to London, so people assumed he had Mad Cow’s disease, or he was depressed, or he was a Type A personality. The search was on for any answer other than Alzheimer’s. He was also tall and strong, six foot two, weighed about 150 lbs. Talk about maintaining your brain. He was a long distance runner, spoke four languages, 200 published papers. The point is: this is a neural a fatal neurological disease — degenerative disease — and  there’s nothing to do, and 20 years ago there was nothing.

I was told my husband’s personality changed. First, it’s behaviors. He became very aggressive, and that was the point where I literally had to dance around a man, which is really how I got the name for the book, but all the way through the disease, I am dancing with the disease. I don’t know how it’s going to unfold, and I’m managing in the moment with my husband.

Love defined? I always respected the fact that my husband was dedicated to his patients. He had a passion for his research and his medicine, and family came second, quite frankly, but even with that, I think everyone deserves to be cared for, even if their disease is without hope, and my husband would have been restrained and overmedicated.

So, redefining love? I had to let a lot of things go in our relationship, and I had to let them go to survive in the moment, with him, for the disease.

Campano: You said that everybody deserves to be loved and cared for. Was it that abstract principle on its own that motivated you to continue to care for your husband?

Comer: We live in a very transactional society. People have challenged me constantly: why didn’t I get on with my own life?

But, I was also a journalist, and I had been in facilities and looked at facilities, and I could not not see what was going on, and the fact that most of the care was run for the management, not for the patients, or the ultimate victim. Neglected, they don’t remember, abused, they forget. I could not live with myself as a human being.

Now, that said, I do say that I never questione when a family member says, I can’t do this anymore. So I’m never judgmental, because this is hard. This is very hard.

But, the other point is you really don’t know how strong you are until you are in the middle of a crisis. You can’t anticipate what your own strengths are. In the early stages, it’s trying to give a loved one as much independence as possible, so it’s their last hurrah, to so the caregiver is somewhat silent. We’re also the first victim, so the anger and the frustration of losing control — we’re right in the line of fire.

What I’ve learned is that giving another human being dignity is very purposeful, and gives you a sense of calmness, and although it’s very, very difficult, there’s this sense that that’s where you’re meant to be.

Campano: This is a little bit of a thought experiment, but if you could somehow go back 20 years, and say just one thing to him before this, knowing that this whole thing would occur afterwards, what would you say to him?

Comer: The same thing that I said to him every day: “I love you.”

I probably would have said I’m sorry that we didn’t live more in the moment together.

He was driving in a career, and I had a career, and you have to make time and have to live the moment. You can’t put life off. I think that’s what I want a younger generation to know, or my son. Anyone who has seen this disease up close is changed forever.

It’s the little things that you miss. You miss “Hi Honey, I’m home,” or you miss “I’ll pick up a quart of milk on the way back from the gym.” Not parties, not social gatherings. Sharing life, that’s what gets missed, and it interrupts generations. My mother — to have a grandchild run in and say, “Nana Nana, how could Gigi ever forget me?” breaks my heart, because I don’t have a good answer, so I never want my great-grandchildren running to their parents and asking that question of me.

Campano: I’m Erik Campano, and this is The Best Medicine from WKCR, Columbia University. Today: Love in the Name of Alzheimer’s, Part I. We’re speaking with broadcast journalist and Alzheimer’s advocate Meryl Comer, who has written a New York Times best-selling book about taking care of her husband’s Alzheimer’s, entitled Slow Dancing with a Stranger: Lost and Found in the Age of Alzheimer’s. In a moment we’ll speak with another Alzheimer’s patient, Scott Russell, who talks about how he uses humor to deal with the disease. But, first, let’s hear Comer’s perspective on the very difficult question of how a person can react, if he or she is given an Alzheimer’s diagnosis. On television, Comer was shown opening genetic testing results that said that she has a chance of developing the disease.

If you found that this was the case, and that you started showing the first signs of the illness and somebody said to you that they may suspect it, how would you prepare yourself?

Comer:[pause] I don’t know that I’m among the majority, but I’m very deliberate about what I would do with my life. I would not color what other people do, but I’ve lived this disease up close. A young woman, whose mother was an accountant took her life, and she never understood why, until she read my book, and then she thanked me. All those years of saying, how could you leave us?, was really in her mother’s mind an act of love, and she didn’t understand that until later. This is too cruel a disease. I would not want to be a burden to my son, I would do anything not to be a burden to my children. I do not want to be remembered that way. That’s why I fight. That’s why I am fearless. I used to be appropriate. [Laughs] I’m over that.

Campano: Wow. Wow. So in other words, you would consider…

Comer: Yes, I definitely would. I would say goodbye, throw a party and say it’s time to say goodbye, even preemptively, but the point is, hopefully, and this is where the hope part comes in, we have learned that we have to go earlier in this space. We have to look toward prevention, and that is the critical place to be now. By the time you’re diagnosed, it’s too late. So, the idea of my stepping out and having my genetic profile and opening the results to camera, to me was saying:hey, heads up, just — another bit of information, pay attention, pay attention to what you’re doing.

Campano: Meryl Comer, broadcast journalist and author of a best-selling memoir about her husband’s Alzheimer’s disease. Once a person finds out they have Alzheimer’s, what can they do? One person with an answer is Scott Russell. He was diagnosed in 2009, and has been a member of the Alzheimer’s Association National Board of Directors, chair of its 2014 Advocacy Forum, and an Alzheimer’s Congressional Ambassador for the State of Connecticut. We caught up with Scott Russell at his home in Ridgefield, Connecticut. He has spoken publicly about his use of humor as a means of coping with Alzheimer’s.

Give me an example of how this has actually manifested itself, this humor.

Russell: Well, not everybody has a sense of humor, but I think it’s one way to break through the barrier, and what I do is I’m very up front about Alzheimer’s and I’ll talk about it and everything from making jokes, being self effacing — I’ll give you one example. I still play soccer at my old age here, and it’s with an older group, but after I had told them that I was diagnosed with Alzheimer’s, it was kind of a hush and everybody didn’t know how to react or what to say, so I just went in and said look, “the good news is I probably won’t remember the score anyway”. [laughter] So, everybody lightened up with that and then they felt comfortable to even ask questions like how do you feel?

Campano: So in other words the humor is laughing at yourself and your own condition.

Russell: Exactly, because Alzheimer’s is a very serious kind of disease and I don’t think people need to put such a dark, morose face on Alzheimer’s. I think it’s very important to put a face of being able to convey that my life isn’t over and I still have a lot of things that I want to accomplish and do. Now it’s interesting, I can’t do Sudoku. That’s what the doctors have recommended, but for some reason I just can’t grasp that. However, I do like to play chess and I play that as much as I can, and I watch Jeopardy, love that. So I try to do as much as I can and I read a lot.

Campano: Do you think that not being able to do Sudoku is a consequence of the Alzheimer’s diagnosis?

Russell : Oh yes. One of the things that I noticed, and, I think, my wife noticed, and some of my work colleagues noticed, was that I was kind of slowing down especially when it came to numbers. Even I had trouble sometimes remembering, and I hate to say it, but the multiplication table, it was really hard.

Campano: Can you more specifically describe very much the phenomenology of what it’s like to look at a math problem that you can’t solve that you previously could solve. What does it feel like? What’s going on precisely?

Russell : It’s very frustrating and for me, I was trying to do long division, and I had a hard time trying to do that and I would then try to go backwards trying to figure it out, because I would come up with different numbers. It was really hard.

Campano: So in other words if you saw eight divided by four, what happens?

Russell: I would come up with the wrong number, or I couldn’t even figure out what it was, and then you’d try to go backwards and multiply it and see if you could come up with that number.

Campano: Is that you don’t see it in your mind’s eye?

Russell: I wish I could explain it. I don’t know. It’s kind of like a fog you just can’t get through, and figure that out.

Campano: People who are not diagnosed with Alzheimer’s, even people who are younger, everybody sometimes, has the experience of forgetting something that they recently learned or blanking for a minute on doing a math problem. Is the experience of Alzheimer’s subjectively different from that? Or is it just an increased frequency of that?

Russell: There is a difference between forgetfulness, which happens, I think, as everyone ages, somewhat, and with Alzheimer’s, and the difference is with Alzheimer’s is, it’s not a matter of just forgetting it and then saying oh yeah that’s right! — unless you’re covering up which, by the way, we all do with Alzheimer’s — but the difference is it’s totally gone.

Campano: Since your diagnosis and since the onset of Alzheimer’s has your emotional life changed? Besides the fact you found out you had Alzheimer’s.

Russell: Yes, I think so. As you start to lose some things, abilities, it makes me feel bad, because it makes you feel like you lost that, such as my wife saying she’s going to take over the bill-paying because I can’t do it. Sometimes I feel a little demeaning. I lose my sense of composure then it just snowballs.

Campano: Do you feel like you’re fundamental personality has changed?

Russell: Oh, I think a little bit, yeah. I’m still pretty outgoing, but I was always outgoing before, and I think at times maybe I’m a little hesitant to offer up opinions because maybe I’m losing a little of my confidence, and that goes from everything when you’re sitting around talking about who’s going to be or should be the next president, to what’s happening in the Middle East. You feel a little bit reluctant, because you don’t know whether you have it all there together yet.

Campano: Is the future something that you think about? Do you try to block out thoughts of it? Do you think about how you’re going to engage in it?

Russell: Yes. I try not to think about it too much. What I think about of the future is: what I want to get accomplished, what I want to do. I do also have a bucket list [laughter] and there are some places I want to go. My big one is Machu Pichu, Peru. I really want to go there. I happen to have read enough about it where I think it’s a very spiritual place. It’s also, I want to hike part of it, which you can do.

Campano: You mentioned spirituality and I’m curious, what has Alzheimer’s taught you about the bigger questions about life?

Russell: Boy, that’s pretty heavy stuff, Erik.

Campano: Do you want me to be more specific? Or do you just want to roll with it?

Russell: Why don’t you give me a little bit more specificity?

Campano: Well — and I’m bringing this up because in one of your interviews you said that one of the things people have trouble talking to you about is death —

Russell: Right.

Campano: — and, this is something we have trouble talking about across the board in society. Have thoughts about what it’s going to be like changed?

Russell: Oh you know, I’ve always felt that death is just part of the normal flow of life and I’ve never felt really afraid of it, and I’m less so now, because I’ve really come to terms with the knowing it’s part of the ebb and flow of nature and of life, but I do know what you do in this life matters to people who are still around once you’re gone, and that’s how sometimes your impact carries on.

Campano: This part of your life has kind of taken on more acuteness.

Russell: Oh it does, absolutely. If I get up and it’s pouring outside, I don’t sit there and say “Oh ain’t it awful” about the rain. I look at it differently, how it’s beautiful and maybe how we need the rain and I enjoy it and that goes for everything else when I try to get up in the morning and look out. I thank God for another day that I can enjoy.

Campano: Now has this changed? I mean were you the kind of person who would complain about the rain before you got Alzheimer’s?

Russell : I don’t know if I’d complain about the rain, but what I’d be so busy and involved with other I’d think oh now it’s raining, now I have to get to the train station earlier or I’m going — it’s soaking wet trying to walk down Fifth Avenue, and now I’d look at it very differently. I think all of us get so wound up in the day to day activities, the minutiae, and yeah, we all have to handle some minutiae, but maybe we have to simplify our lives more.

Campano: Simplify.

Russell: Yes, absolutely, start to realize what’s really important.

Campano: So, in other words, Alzheimer’s has scrubbed away the unnecessary worries?

Russell: Yes, I think I’ve become more mellow.

Campano: In part 2 of Love in the Name of Alzheimer’s, Scott Russell will show us around his home — and particularly his office, filled with stuffed animals called Alzi Animals, which he sells to raise money for Alzheimer’s research. We’ll also speak with Max Lugavere and Richard Isaacson, MD, who are teaming up on a documentary film and project to help young people reduce their risk of developing Alzheimer’s. We’ll talk with a leading neuroscientist, who explains what we know about the biology of, and potential treatments for, Alzheimer’s, Dr. Stephen Ginsberg, and also sit down with a Vice President of the New York City chapter of the Alzheimer’s Association, Jed Levine, who will tell us what he has learned after decades of working with the illness.

The conversation continues at thebestmedicineradio.com. You can read a transcript, leave your comments, and learn more about the guests and resources mentioned in this program.

The Producer of The Best Medicine is Linh Tang, the Marketing and Technical Director, Jean Kremer, the Content Editor, Evan McWilliams, the theme music composer Tim Hoyt and the graphic designer Gabe DeSanti. I’m Erik Campano. This program was originally broadcast on June 9, 2015. The Best Medicine is a production of WKCR 89.9 FM and WKCR HD-1, Columbia University in the City of New York.

Transcript of Part II:

Erik Campano: I’m Erik Campano. On this program, we’ll speak with people who have experienced Alzheimer’s disease from a number of different perspectives: Dr. Stephen Ginsberg is a neuroscientist at the forefront of the biology and treatment of Alzheimer’s; Jed Levine has decades of experience as Executive Vice President of the New York City chapter of the Alzheimer’s Association; Max Lugavere, and Richard Isaacson, MD, are working, respectively, on a documentary film, calledBread Head, and prevention clinic for young people, to help them reduce their risk of developing Alzheimer’s later in life; and Scott Russell is an individual with Alzheimer’s, who speaks publicly about the experience of the disease from within, and also makes and sells stuffed animals to fund Alzheimer’s research.

From WKCR 89.9 FM and WKCR HD-1 Columbia University, this is The Best Medicine: Healthcare and humanity, one story at a time, a radio show and podcast that uses storytelling to shed light on medical conditions through a new prism: not only as biological science, but as a shared human experience, a source of compassion, and a well of hope. Now: Love in the Name of Alzheimer’s, Part II.

Alzheimer’s disease is a chronic dysfunction of the nervous system that usually starts slowly and gets worse over time. The most common early symptom is difficulty in remembering recent events. As the disease advances, symptoms can include problems with language, disorientation, mood swings, loss of motivation, the inability to care for oneself, and behavioral changes. Gradually, Alzheimer’s patients can lose their bodily functions, and this ultimately can lead to death. The average life expectancy following diagnosis is three to nine years, and as a person’s condition declines, she or he often withdraws from family and society. The United States census estimates that nearly half of people above the age of 84 have Alzheimer’s disease. Therefore, with our aging population, Alzheimer’s raises important questions about what it means for human beings to care radically for one another, and also about embracing the transitory nature of mental clarity.

Dr. Stephen Ginsberg is on the forefront of study of Alzheimer’s disease. He is a Research Scientist at the Nathan S. Kline Institute for Psychiatric Research and Associate Professor in the Department of Psychiatry, Department of Physiology & Neuroscience at New York University Langone Medical Center.

Stephen Ginsberg: Alzheimer’s disease is a pathological as well as a clinical entity, so you hear on the street Oh he’s got Alzheimer’s. Well what they’re really meaning is, this person probably has memory loss or loss of executive function, meaning they don’t do well cognitively. Alzheimer’s, named after the physician Alois — I’m hopefully pronouncing his first name right — Alzheimer, in 1906, actually looked at the brains of people, particularly a woman named Auguste Deter, his first patient, and they saw the pathological hallmarks which are what we call now senile plaques and neurofibrillary tangles. So now, normal people that age will get senile plaques and neurofibrillary tangles, and some cell loss, but they get it at the same level or amount that someone does that has Alzheimer’s disease.

Campano: So in other words, what scientists have done is they’ve established a threshold amount.

Ginsberg: Yes, well, and it’s a sliding scale so you can’t compare fairly someone that’s 100. We have lots and lots of centenarians now. You can’t really compare the brain of a centenarian, in terms of plaques and tangles, to a brain of someone that’s 60 per se, and get a fair estimate most of the time.

Campano: What precisely do these plaques and tangles look like? What’s the picture?

Ginsberg: The plaque, the senile plaque, is made up of an amyloid, and it’s called the amyloid beta protein. What basically happens, these proteins are really sticky, and they get chopped intò pieces, and then they aggregate into what we call beta pleated sheets, and form fibrils and there’s multiple pieces of this pathway. We have monomers that become dimers, that become olgomers, that become protofibrils, that become fibrils. Presumably some way, somewhere along this continuum, the species are toxic, and do bad things to the brain. We’re not a hundred percent sure how, when or why. The same with neurofibrillary tangles — are made up of a protein called tau, which is a microtubule-associated protein, and instead of depositing extracellular senile plaques that are outside of cells, for the most part, tangles are intracellular, and are like ribbons or girders that get tangled up inside a cell, and when you look at a picture you literally see this stuff entangled, or ensnared, in a neuron.

Campano: So to paint this bigger picture of the brain: the brain’s composed of neurons.

Ginsberg: And other cell types, yes.

Campano: And other cell types, and then the plaques occur between cells, basically.

Ginsberg: Basically. So, I should take a step back. We really don’t know. You go after what you see, because I’m not 100% sure that a plaque, or a tangle, causes Alzheimer’s disease. It might be a result. Alzheimer’s disease does not just destroy the entire brain. The entire brain is not just a bowl of jello. What happens is, there’s selective vulnerability of particular circuits, and the circuits that are involved particularly early are the ones where cognition takes place. So we’re not, again, 100% sure at least in my mind where the disease begins, but it’s most likely in the temporal lobe structures. The ones, you know, behind your eyes.

Campano: The part of your brain behind your eyes.

Ginsberg: Yes, not directly behind your eyes, but sort of on the temporal — where you chew and by your eyes and your orbits, there’s the temporal lobe and the structures very far in front of it are called the hippocampus and the entorhinal cortex. What’s important about them is they receive information from the exterior world and also encode for memories and then spit this information out to the rest of the cortex for processing. So, they’re very integrative, circuit-laden areas.

Campano: Recently, your research into animal models has shown some possibility of stopping, essentially, these physiological changes.

Ginsberg: We have a lot of promise. I’ll illustrate two different lines of experimentation that we have going on in my laboratory, one being a reduction in calories, caloric restriction, another delivering a nutrient, a supplement called choline, to the mothers and possibly to the children during development. So, we’re investing in the future or reducing energy intake throughout a lifespan. So, those are the two that I’m going to talk about.

So, I think the first one I’ll talk about is choline supplementation. This has been known to deliver choline which is a nutrient. Our bodies don’t really make enough of it. And, it’s an essential nutrient that’s found in the things your mom or grandma told you to eat: spinach, it’s enriched in fish, and proteins, and beans, and what it does is it has multiple roles, and one of them is to help make the lipids, and the membranes, in your brain.

Campano: To make them?

Ginsberg: Yeah, help synthesize them.

Campano: Oh wow, OK.

Ginsberg: It’s a synthetic enzyme. Now it’s also used in the liver. It’s in the blood. But, the brain craves choline, to make the membranes, which we need for proper connections and proper synaptic connections. It also is a precursor for a major neuro transmitter, acetylcholine. So it has multiple roles. Also, the icing on the — the cherry on top of the sundae — is that it’s the number one dietary methyl donor. It changes gene expression by what we call a field called epigenetics. So, chloine is a real major workhorse and player. So, we’re thinking from a public health issue that pregnant moms aren’t getting enough in their diet, and that if we supplement the mother during pregnancy and maturation, what we see is benefits in the offspring, very far distant from birth. Caloric restriction and choline supplementation can be actually combined, too. We can mix and match, and try double-whammies and two hits, or one hit, and what we’re trying to do is think of ways we can impact the offspring themselves, and do it in a way that we think can be effective, but also isn’t going to be prohibitively expensive that there’s going to be haves and have-nots. I think that’s just an important thing to think about.

Campano: You spend a lot of your waking hours thinking about how people can, in their old age, think better, think more clearly, how we can make that —

Ginsberg: So —

Campano: — is that — you’re a scientist who looks at —

Ginsberg: So at the end of the day maybe when I’m reflecting I do that.

Campano: Well sure. [laughter]

Ginsberg: During the middle of the day what I’m really trying to do is figure out mechanisms: [snapping his fingers] mechanism, mechanism, mechanism.

Campano: OK, fair enough. [laughter] You don’t spend most of your day thinking about that question, but you do reflect on it when you go to bed at night I suppose?

Ginsberg: Sure.

Campano: Clearly there’s something very deep and very human that’s motivating your work. It’s not just about understanding the brain, but it’s about wanting to reduce suffering.

Ginsberg: Oh, absolutely. I think I’m fairly passionate, as most scientists are, in this field and related fields, is that we want to help people, especially in cognition, because it is one of the worst things to lose.

Campano: So how does decades of this work affect you personally? What have you learned about aging and the way that you perceive your own —

Ginsberg: Mortality?

Campano: Yeah.

Ginsberg: So, I envision aging as a marathon over time. So, what you’re seeing is a change over time, and it’s incremental and decrimental, so you don’t necessarily notice it unless you look in the mirror one day, but there are periods of time where there’s a lot of clarity, and I see my own career and my own research as a long-distance run. You just sort of have to roll with it. You know sometimes there’s periods of absolute free-fall, and things aren’t working, and you have to just grit your way through them, like you’re running up a hill or tumbling down a hill, and then there’s lots of wide expanses that are flat, and you’re just trying to maintain your momentum, and then every once in a while you get to a space where you see there’s something you really want to go after, and you run and you get it, and it’s very rewarding.

Campano: I mean how — if you started experiencing cognitive decline, if you saw that coming, right? — as other researchers have actually had, people who studied the mechanism behind Alzheimer’s get Alzheimer’s —

Ginsberg: A cruel joke! Yes. [laughing]

Campano: Yeah, how would you respond to that?

Ginsberg: I would just try to chronicle what I’m doing, and do the best I can.

Campano: In other words, the dignified way, or the right way, or the redemptive way to deal with it is documentation.

Ginsberg: Yes, and being part of it. What I don’t like are — there are many places in the world that claim they don’t have demented people, because they disappear them. I think that’s about as cruel as one can get. I think that what we need to do is, as your function diminishes, you have to be stepped down into care with dignity. But yeah, I think you have to stick to who your personality is, until it is no longer.

Campano: Dr. Stephen Ginsberg, a scientist who studies Alzheimer’s disease. I’m Erik Campano. I brought up the importance of story-telling — not only for the patient, but also for the caregiver — with Jed Levine, Executive Vice President of the New York City chapter of the Alzheimer’s Association.

Jed Levine: It is important to be able to tell your story, and if you’re doing it in a support group you are going to be understood in a way that you’re not in any other arena of your life, and there is a normalization of your experience that most people feel — one of the issues with Alzheimer’s is that it’s so isolating for the person with the disease and their family members. So, what we try to do is to provide community.

Campano: Clearly painful emotions are attached to the experience of Alzheimer’s and the caregiver and you mentioned some of those earlier, sadness, guilt, frustration and so forth. It’s also interesting to look at the insight that the Alzheimer’s experience can bring to a caregiver. For example, one of the people we spoke to was a caregiver who said that when my patient, and I don’t remember whether it was the grandmother or the mother, is lucid I cherish those moments more and it’s given me a new understanding of the impermanence of human consciousness. Themes like that are repeated.

Levine: Absolutely, absolutely and I think for different people it takes a different amount of time to get there, where you can appreciate that, but I think this can be an opportunity for growth. We live in a hyper cognitive society. And, yet, there are other ways of connecting with people. So, we are social people. We are emotional, and it’s interesting that in the brain the emotional center in the brain actually stays quite intact, so, the person with the disease, even well into the disease can experience pleasure and comfort. So, there are moments of opportunities of joy and connectedness that don’t have to do with memory, don’t have to do with higher cognitive abilities, but just being able to experience enjoying a chocolate ice cream together, or being out in the park and enjoying just seeing the trees, and I’ve seen people with Alzheimer’s with their caregivers really have this genuine glee in experiencing things. I ran an adult daytime treatment center, the first one in New York City for many years, and there were lots of times where there was great laughter, and connectedness, and warmth, and human emotions, that were wonderful.

Campano: This is Love in the Name of Alzheimer’s, on The Best Medicine on WKCR. I’m Erik Campano. Max Lugavere is a filmmaker who is directing Bread Head, a documentary about how young people can take care of their brains now, to prevent Alzheimer’s in the future.

What is your message for millenials about Alzheimer’s?

Max Lugavere : I experienced with my mom — so my mom has not been diagnosed with Alzheimer’s disease but she has a form of cognitive decline, memory loss, that she began experiencing three years ago. And, at the time, I knew very little about neuro-degenerative disease, and what I did know where largely myths. One, that it was a disease of the old. Two, that it was something that you get from your genes. What I’ve learned is that these are not so much the case. For me it’s a conversation yes about prevention, but it’s also about optimization in a sense. So, I started seeing Dr. Isaacson, I started just, you know, fixating on the myriad of ways in which lifestyle and diet affect brain health and cognition, and then I decided, as somebody who has a pretty extensive background in media: amplify this message. You know the oldest millennial now is 35, and I think there’s a statistic that says that we’ve invested more in human capital than any previous generation. And so, to me the idea that I, and my fellow millennials, could one day experience cognitive decline is a tremendous loss of intelligence of information. So, I’ve just decided to do a documentary.

Campano: What do young people think about it in general? What are sort of the myths or the ideas that surround Alzheimer’s?

Lugavere: Most people think of Alzheimer’s as this disease of the old,this thing that my grandma had, that you can’t sway your odds you know in the direction either for or against, and so my goal is to spread the empowering insights that are out there. You know for a long time we were in the dark, as Meryl said, you know twenty years ago this was a different disease. For a while Alzheimer’s and prevention couldn’t be in the same sentence without drawing the ire of the medical establishment, perhaps, but, in 2015, I feel like we have enough insight out there. It might be preliminary but we’re not in the dark. So, thanks to the work of Dr. Isaacson, Miia Kivapelto — she just announced the results of the finger study — this is concrete evidence that shows us we actually do have a say in our cognitive health. And you know, as somebody who you know, human capital is so important to me — I’m a very creative person — so if there’s anything that I can do to maximize my cognitive health, I’m going to do it. There was an AARP study recently that said that 93% of Americans believe brain health to be very important, yet have no idea how to either maintain or improve their brain health. So, there’s a major gap there, and my goal is to fill that gap.

Campano: The Dr. Isaacson whom Max Lugavere was referring to is Richard Isaacson, MD. He runs a prevention clinic in New York for people of all ages, to help reduce their risk of Alzheimer’s.

Richard Isaacson: What are things that people can do? So number one: there’s no one-size-fits-all approach at Alzheimer’s prevention but there are a lot of general things that people can do.

There’s the pharmacologic ways, and then there’s the non-pharmacologic ways.

The non-drug ways are: exercise on a regular basis, not just running a marathon — because some of my patients just decide to go run a marathon — that actually may not be the right thing. You have to combine weight training, maintain muscle mass, check your percent body fat, exercise on a regular basis is key, more exercise is necessary if you have one specific gene.

Nutrition is really, really, really, really important. There’s ten different things I can tell you to do. Lowering simple carbs, too much sugars, too much processed foods is key, reducing empty calories, eating brain-healthy fats, eating berries, blueberries and strawberries. A half-a-cup two to three times a week is associated with delaying the onset of cognitive decline by about two years or so. I can go on and on: dark cocoa powder, coffee in the morning in moderation, getting sleep on a regular basis, destressing, taking lots of deep rests, taking vacations. These are the non-drug approaches.

The drug approaches, there’s no FDA-approved drug, but if you have high blood pressure, high cholesterol, diabetes, you have to treat these things and you have to be aggressive —  really really important — there may be some supplements. One or two, depending on a variety of factors, may help. Omega-3-fatty acids potentially may be helpful, but it depends on someone’s genes, they will help some genes, they won’t help as much some other genes, very complicated, vitamins, certain people as an example if you have mild memory loss and you’re above the age of 55 and you have a high something called a homocysteine level in the blood. Max is actually at 32, healthy guy, has a high homocysteine, he also has a gene. You take B-complex vitamins, and very specific levels B complex vitamins can actually mildly improve memory as well as slow down shrinkage of the memory center of the brain.

So again, it’s not a one-size-fits-all approach. A normal person may not benefit, but if you have a little bit of memory loss and a high homocysteine, the evidence suggests it.

I still have a blister on my pointer finger here, I’m a bass player, my nickname in the band is Blisters, so that’s all true. So, music, either lifelong musical experience or even midlife onward has been proven to delay cognitive decline. You know, my uncle Bob couldn’t remember what was happening five minutes ago, thirty seconds ago; he could remember every single word to every Frank Sinatra song that we ever played, and the dance moves, and the everything. There’s something special about music. It involves multiple parts of the brain, different association areas. It builds a very significant back up pathway. Either listening to music is fine, but playing a musical instrument, learning something new, like a new language, but especially a musical instrument absolutely builds backup pathways for the brain.

Campano: This is the Best Medicine on WKCR. I’m Erik Campano. Today: Love in the Name of Alzheimer’s, Part II.

Scott Russell has Alzheimer’s disease. He was diagnosed in 2009, at what he says was the age of 59-and-a-half. He let us visit him at his home in Ridgefield, Connecticut, where he makes and sells stuffed animals called Alzi Animals, to raise money for Alzheimer’s research.

Scott Russell: I was out actually in San Francisco with my oldest son and, after dinner, we were walking down there. And there was an art gallery that they were having an opening for, and I went in there and I saw this stuffed animal that had been painted, this big lion. It was actually quite beautiful. The price tag on it was about 3000 dollars, so I looked at my son and I said “you know, I could do that,” and the light went on, and I decided that I am not much of an artist, but I like it, I always have, I always dabbled in it, and I just decided you know this might be a good way to do some fundraising for the Alzheimer’s Association, as well as, this is another key piece, giving Alzheimer’s a much more gentler, friendly face. And, I started collecting stuffed animals from manufacturers that had gone out of business, and some donations from people, and then I would paint them, using pastels and everything else, and also to accessorize them for costumes, or what not. And then, we would sell them at Alzheimer’s events, like the walks that they do. That’s the main reason that I do it.

But, I also do it for another reason, personal, and that’s that for me it’s good therapy. It gets the creative juices flowing, and I’ll sit there and try to figure out what colors do I want to use on that? What theme do I want? What am I looking for? I’m always looking for something that’s more fanciful, eclectic, different. So I do that, and I sometimes give them names and I will tell you one time, it was really gratifying, that I had entered a couple of the animals in a local art show and people could buy them if they wanted to.

And, this one man had bought this lion that I had, and I had accessorized it with a Viking helmet, and I had painted on it like armor and things like this. And, he bought it and he wrote me a letter along with a picture that showed his deceased wife who had been an opera star in New York and had done Brunhilda or whatever it was, with the horns on the Viking helmet. And, he said that just reminded him so much of her. She also had died of Alzheimer’s, and he wanted that, because it gave him a fond memory of his wife. And, that time went right to my heart, just made me feel so good.

Campano: We have the dog, we have, what else? Yeah? What’s this?

Russell :  This is a tiger. And, here is one that I’m just starting on, a monkey. And, I’m going to do kind of an “Ape Collection”, because if you ever saw the latest movie of the planet of the apes the premise was, is that the apes get very smart, because they accidently take a drug that was supposed to help Alzheimer’s and John Lithgow plays the father who has Alzheimer’s who takes the drug and for two weeks he’s like back to perfect. You know? Playing music and everything else. But, unfortunately it doesn’t last. But with the ape it does so I was thinking of doing a collection of apes for my Alzi Animals. This is going to be a pirate ape.

Campano: So you say your office is messy?

Russell: Yeah.

Campano: Messier than it used to be?

Russell: Oh yes, much messier. I just have had a hard time getting the incentive to organize it.

Campano: Well there’s all these stuffed animals around the place.

Russell: Yeah, yeah.

Campano: Among these stuffed animals that Scott Russell showed me and our Technical Director, Jean Kremer, was a black lab dog with a something like a blue scarf around its neck. You can see its picture on our website, thebestmedicineradio.com.

And what was the other one you were holding?

Russell: It’s another dog.

Campano: Oh yeah, tell us about the other dog.

Russell: I think mentioned the lab, black lab, with his blue dog neck chief and black and blue socks.

Campano: Dog neck chief? [laughs]

Russell: [laughing] Yeah! I’ll then name him. I’ll have name tags that I’ll put on them. And, sometimes what’ll I do is, let the kids name them themselves!

Jean Kremer: Along with the creation of the stuffed animals, there’s also the creation of a kind of storytelling behind it.

Russell: Always have a theme of some sort. What’s the story behind that one? Why does that dog have armor on? Well, I just kind of liked the idea of having some nice blue body armor for the dog.

Campano: And do you ever sleep with these stuffed animals?

Russell: [laughs] No I don’t.

Campano: I do!

Thank you very much for letting us into your home, and sharing your experiences with us, Scott and, for showing us your stuffed animals too.

Russell: Oh you’re quite welcome Erik, Jean. You’re welcome here, any time you want to take a look at the animals or anything else, OK?

Campano: [Laughing] does that go for our listeners to?

Russell: Them too!

Campano: What can you tell them about what, actually, if they want to buy the animals?

Russell: Typically, I mean they can contact me if they want to, but usually I sell them at the walks.

Campano: And where can they look online?

Russellscottsalzianimals.com.

Campano: Alzi is?

Russell: A-L-Z-I

Campano: Scott Russell, who has Alzheimer’s disease, and, in Ridgefield, Connecticut, makes and sells stuffed animals called Alzi Animals, to raise money for Alzheimer’s research.

The conversation continues at thebestmedicineradio.com. You can read a transcript, leave your comments, and learn more about the guests and the resources mentioned in this program.

The Producer of The Best Medicine is Linh Tang, the Marketing and Technical Director, Jean Kremer, the Content Editor, Evan McWilliams, the theme music composer Tim Hoyt and the graphic designer Gabe DeSanti. I’m Erik Campano. This program was originally broadcast on June 18, 2015. The Best Medicine is a production of WKCR 89.9 FM and WKCR HD-1, Columbia University in the City of New York.

About the guests:

Meryl Comer is President and CEO of Geoffrey Beene Foundation Alzheimer’s Initiative, author of Slow Dancing with a Stranger: Lost and Found in the Age of Alzheimer’s, and the 18-year moderator of the television debate program It’s Your Business.

Max Lugavere is the Director of Bread Head, an upcoming millennial-focused documentary which explores the impact of diet and lifestyle on brain health.

Richard S. Isaacson, MD, is Director of the Alzheimer’s Prevention Clinic, Weill Cornell Memory Disorders Program, and Director of the Neurology Residency Training Program at Weill Cornell Medical College/New York-Presbyterian Hospital.

Dr. Stephen Ginsberg is on the forefront of study of Alzheimer’s disease. He is a Research Scientist at the Nathan S. Kline Institute for Psychiatric Research and Associate Professor in the Department of Psychiatry, Department of Physiology & Neuroscience at New York University Langone Medical Center.

Jed Levine is Executive Vice President of the New York City chapter of the Alzheimer’s Association.

Scott Russell was diagnosed with younger-onset Alzheimer’s disease in 2009. He is a former member of the Alzheimer’s Association National Board of Directors, chair of its 2014 Advocacy Forum, and an Alzheimer’s Congressional Ambassador for the State of Connecticut.

About the image:

Scott Russell makes and sells Alzi Animals, unique and lovingly-crafted stuffed animals, from his home in Ridgefield, Connecticut, to fund Alzheimer’s research.

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