Schizophrenia, Malady of the Mind: The Path to Prevention (Ep. 69)

Guest: Jeffrey Lieberman,M.D., author of Malady of the Mind

Dr. Jeffrey Lieberman draws on his four-decade career to illuminate the past, present, and future of schizophrenia.

Of the many myths and misconceptions that obscure our understanding of schizophrenia, the most pernicious is that there is no effective treatment or cure. Though that may have been true in the past, the current reality couldn’t be more different: today’s treatments have the potential to be game-changing—and often lifesaving.

For the first time in history, we can effectively treat schizophrenia, limiting its disabling effects—and we’re on the verge of being able to prevent the disease’s onset entirely.

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We ask about:

What can families do to get more psychiatrists on board? 

Hope for today’s young people who are in First Episode programs after their first psychosis. 

 Is true recovery possible or what do you mean by recovery?

What can families do to promote housing that heals/works for people like our sons? Why is there so little of it?

The leap that cannabis can cause not only psychosis but also schizophrenia. 

Assisted Outpatient Treatment and the right to treatment despite

Anosognosia.

…and much more!

LINKS:

https://jeffreyliebermanmd.com/

https://www.simonandschuster.com/books/Malady-of-the-Mind/Jeffrey-A-Lieberman/9781982136420

https://www.amazon.com/Malady-Mind-Schizophrenia-Path-Prevention/dp/1982136421

Mindy and her book: https://mindygreiling.com/

Randye and her book: https://benbehindhisvoices.com/

Miriam (Mimi) and her book: https://www.miriam-feldman.com/ 

Hosts:

 Randye Kaye - was a morning Radio Personality bringing humor to CT families when her own son was diagnosed with schizophrenia. Now she is still a Broadcaster, Actress, Voice Talent, Speaker, and Author (Ben Behind his Voices, Happier Made Simple)

Miriam (Mimi) Feldman -  is an artist, writer, and the mother of an adult son with schizophrenia. Her book, He Came in With It chronicles her family's story and was released to rave reviews on July 21st, 2020.

Mindy Greiling - Mindy Greiling was a member of the Minnesota House of Representatives for twenty years. She helped found the nation's first state mental health caucus, which successfully lobbied for a significant increase in Minnesota's mental health funding Her acclaimed memoir is Fix What You Can.

Transcript

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SPEAKER_03 0:00

This is not an unsolvable problem. We know what could work. We just don't do it. You know, in some things, if you have ALS, only a scientific breakthrough is going to change your prognosis. If you have schizophrenia, I would say the vast majority of people who have the illness could be doing better than they are simply because of the limitation of the treatment they've received.

SPEAKER_02 0:22

Dr. Jeffrey Lieberman has treated thousands of patients with mental disorders, many of whom have schizophrenia, over his 40-year career as a physician and scientist. He is the author of a new book, Malady of the Mind: Schizophrenia and the Path to Prevention. And he has lots to say to the three moms and to all of us. In the book is a clear, compelling exposition of how schizophrenia can and should be successfully treated. And you'll hear all about it in this episode. Welcome to our podcast, Schizophrenia. Three moms in the trenches. From the place where schizophrenia and real life collide East Coast, West Coast, Middle America. With Miriam Feldman, Mindy Gryling, and Randy Kay. We are currently at episode 69, and I have been trying to get Dr. Jeffrey Lieberman on the show for the longest time, and I'm so excited he is here with us today. Jeff is the author of this book called Malady of the Mind, subtitle, very important to listeners of this podcast: Schizophrenia and the Path to Prevention. And wouldn't that be nice? We would love, love, love prevention, but there's so much in this book. We're going to dive almost right into it. Just want to mention two things. And if you're watching on YouTube, Jeff is, oh, can we call you Jeff or do we call you Dr. Lieberman? What's the official?

SPEAKER_03 1:52

Please uh call me, call me Jeff or Jeffrey, whatever you, whatever you want. And talking to me, Dr. Lieberman makes me feel old.

SPEAKER_02 1:59

Okay. All right, perfect. So I bet you liked it when you were 21, though, or 24, and you first got that MD, right? So um don't turn your camera off, Jeff. Just stay with us. But I want to mention that our last two episodes, 67 and 68, were about the Angry Moms in Washington and Clomzipine and the REMS. And one of them was our guest, Sue Maida. And then the last episode, we had permission from the Schizophrenia and Psychosis Action Alliance, did I get that right, to actually release, be the first people to release the video of the testimony in Washington. So our last episode, episode 68, only had me introducing it at the beginning. And it was like, take it away, people with psychosis and their families. So Mindy wants to share something that happened as a result of those last two episodes.

SPEAKER_01 2:58

Great. Thank you, Randy. Well, not very happy news, but um, since I'm the public policy director for schizophrenia and psychosis action alliance, I got an email today from a woman who had watched our podcast and therefore she knew to contact SPAA. And she said she had contacted over 100 Congress people about the REM. She was really on the tear because it was harming her daughter. And actually, after she finished her contacts with Congress, her daughter died by suicide. So this is a serious issue. And I'm glad we dedicated uh two programs to it. And maybe uh Dr. Lieberman, Jeffrey, I guess we're going to call him, will um have a comment about that as well.

SPEAKER_02 3:45

Yeah, we can definitely, and REMs are, for those who didn't hear the last two episodes, REMs are risk evaluation mitigation strategies.

SPEAKER_01 3:54

So it's um something that the federal drug administration requires and it's overkill. They it's necessary when you're phasing into clozapine, but after that, it's a barrier. Clearly, it was a barrier for this young woman.

SPEAKER_03 4:09

Did she ultimately did REMs was the reason? Did she uh ultimately not start clozapine because of the barrier of REMS?

SPEAKER_01 4:17

You know, the it was an email, so I didn't get a chance to talk to the mother, but that's what she said, but she didn't give any details.

SPEAKER_03 4:25

Well, there's there's there's a couple of uh aspects to the underutilization of clozapine and the difficulty in accessing it. Um, first, uh among the class of antipsychotic medications, um you can generalize by saying that most of the differences between them are in the domain of side effects as opposed to efficacy. Um, the exception, though, is clozapine. It clearly is a superior medication in terms of efficacy for pharmacologic reasons that still have not been precisely determined. But the uh thing is that it's vastly underutilized. Um the market share of people who have schizophrenia or have treatment resistance schizophrenia, however it's defined, that are received it, receiving it is a fraction of the number that would be eligible and potentially benefit from it. Now, uh REMS is certainly one factor. And REMS is really a pretty cynical uh device because it's ostensibly to protect uh put guardrails around patients receiving it because it has serious, even potentially lethal side effects. But it's really a medical legal thing to protect the pharma pharmaceutical company and the doctors. Um, but it discourages people from using it. But even if there weren't REMs or REMs were relaxed to be much less stringent, um, I would wonder whether the utilization would increase to what it should be. And um, I don't want to demean my my colleagues, but you know, there is just an avoidance to using it, either because of perceived risk, because of the hassle of REMs, or because of just the desire, you know, not to do what's necessary to manage people on clozapine, which does require more oversight and and uh and and intervention. Um, but it's it's it's just uh there's no excuse for it. Absolutely no excuse for it.

SPEAKER_02 6:30

I think we're definitely all on the same page, and you devote quite a lot of time in your book. Um, we have read your book and we have questions, but I just want to say it is, I feel like I should get a medical degree after reading this book. There's a lot to it. There's uh it, along with your stories of your many, many years as a psychiatrist. Patrick Kennedy, former U.S. Congressman and founder of the Kennedy Forum, says Dr. Lieberman tackles one of the most complex and misunderstood mental health conditions. I think we can agree with that, with precision, compassion, and grace, grounded in historical context and Lieberman's own rich clinical expertise. The book offers readers a meaningful understanding of the past, the present, and the promising future of schizophrenia treatment. And boy, could we use promising future. So I will say that there is a lot about the history that I wasn't aware of. Most of my education came from the schizophrenia, and uh E. Fuller Torres book, the manual basically about schizophrenia. But there was so much about how much you clearly care about your patients. Um, and and the section about what you call the scientific circus, all the different theories and misunderstandings, and then how schizophrenia is diagnosed. And of course, our favorite part, the path to prevention. How do you diagnose it? What would be the best way? How important is early intervention? Schizophrenia and society do the right thing. And you also talk about the importance of having someone to care about you, the importance of family. So there's so much in this book, I highly recommend it. Um, it's not, it's not a simple read. It took me about 10 days because I had to absorb and wait, but if you want to feel really well informed about schizophrenia and hear some great stories, we all do highly recommend it. So, in the knowing that we have about 45 minutes to an hour to talk, before we get into specifics, Jeff, can you just say, like, are there like two to three main points that you hope people will take away from your book?

SPEAKER_03 8:43

Yeah. Well, first let me say that um I I had never written a book for the anything for the lay public. I was a pointy-headed scientist who wrote hundreds of scientific papers. But in 2015, I felt compelled to, because of the lack of understanding about mental illness and psychiatry, I felt compelled to try and dispel the mystery and the confusion. And I started with, you know, psychiatry. And uh, my publisher gave it somewhat unflattering title of Shrinks, the untold story of psychiatry. And uh, when I had had a much more poetic title, and when I said shrinks, that's kind of demeaning. It's like pimple poppers for dermatologists or gas passers for anesthesiologists. That's what people think. So um, but that was that was less dense than than than uh malady of the mind. And I I wrote Malady of the Mind in order, you have to write a book that's accessible and engages the reader, even the reader that has no experience with mental illness or or or or medicine or science, and it means putting stories, anecdotes, etc. But to do justice to the illness, I felt that you had to go into the science, uh, the good, the bad, and the ugly over history um in order to lay out how the trajectory of our coming to terms with understanding and treating the illness uh occurred. And, you know, it may not be a book you read from front to back, but um I think it's worth plowing through and getting, because right now I think it encompasses exactly where we are. But in terms of what are the takeaway messages, I would say three things, and they're very simple. First, schizophrenia is a brain disorder, okay? Uh it's not a disorder, you know, the brain is a unique organ, it's one of many organs, the kidney, the lungs, the heart, uh, the uh liver. Um, but it is the only organ that has a metastructure. A metastructure meaning the mind or the psyche, and if you're so inclined, the spirit. And so it's unique. And the the these are the result of what are a principle called emergent properties. When you have uh when you have a structure that is so complex and so scale is of such a large scale, things that are not predicted by the elemental parts, the cells, uh the uh connections um can emerge. And that's what happened in evolution and human beings. And um uh uh so the brain is is truly you know unique. Um, so it's a brain disorder, it's not a disorder of traumatic experience, of you know, the way that you were uh your environment growing up. Psychological contributions to mental illnesses are real and numerous and uh serious, but make no mistake, this occurs at a biologic level. Second thing is that it's not a one-time deal. And because most people don't know what it is in advance, when it strikes their child or their adolescent, they're kind of uh dumbstruck and they think, oh, it's a one-and-done thing. It's not a one-and-done thing. It's not like breaking your leg and recovering, it's not like having the flu. It's not even like having cancer and having it successfully surgically excised. It's a potentially recurrent and chronic and disabling disorder. And then the third thing, which is I think the most important, is that it's not just treatable, it's potentially preventable. Now, there's three kinds of prevention. Uh, the best kind is prevent something from happening altogether, you know, preventing the illness from having an onset. But there's secondary prevention, which means okay, you've got the illness, but you don't sustain the consequences of the illness in terms of its uh residual or persistent symptoms or disabling effects. Um, and the third kind is that when individuals have advanced stages of the illness, you're able to mitigate those to sort of stabilize the illness at that stage. So the good news is that um, even though historically there were either specious theories and preposterous kinds of treatment, um uh that and and it they those all sort of evolved into a pretty nihilistic uh notion of people who had schizophrenia were doomed from the womb and it was inexorable in terms of you know their uh consequences. Um, but that's not true. It is treatable. Um, the only qualification is that uh your success and your therapeutic goals really depend on uh where in the course of the illness you're first intervene.

SPEAKER_02 13:17

Okay, that's so that's those are three great points. Um, Mimi, you got a question.

SPEAKER_00 13:22

Well, you know, since we're moms and a large portion of our audience is moms, um, thank you for mentioning the importance of family and family involvement in your book, because that's a recurring theme with us. And um, I'm just wondering what families can do to get more psychiatrists on board the way that you are, because we our experience, our anecdotal experience between the three of us is they're they expend a lot more energy trying to exclude us than utilize us.

SPEAKER_03 13:58

Well, um you know, this is uh unfortunately a complicated question that you know has a number of different things that uh are relevant to understand it. Um first, as a I have two sons. Um as a parent, you know, when I was in medical school, probably the most depressing rotation I had was on the pediatric oncology service. Um but apart from that, uh I can't think of anything that's worse in terms of the despair and the distress it causes a parent than having a child who develops schizophrenia because it is so tragic. It comes on and when uh people are reaching the prime of their life, their whole life, their potential ahead of them. It uh it it changes them. It it changes the them, the you know, the people that you knew and who they were into somebody that uh is different. And this happens in other illnesses like you know, Alzheimer's disease, but that's at the end of life. Um, and it's in a way that is accepted because it blends into the antiquated notion of you know, sort of senile dementia, meaning you as you age, you become cognitively impaired, daughtering, etc. Right.

SPEAKER_02 15:17

The timetable is you know a little more sort of air quotes normal. And you're certainly someone I wish had been my psychiatrist from my son at the time. Is there anything that we can do to help other psychiatrists besides hand them your book to feel that way?

SPEAKER_03 15:35

This is so I I don't want to get too um pedantic, but uh medicine didn't become specialized until the beginning of the 19th century. Before that, you had cures and carvers. You know, carvers were surgeons, cures were physicians, they didn't really have much to do other than bleed and things like that. Um but specialization began at the beginning of the 19th century, and the first specialty was actually the brain doctors in 1808, and neurology and psychiatry was together, but the name that was conferred on them was psychiatry. It was called by Johann Riel, a German psychiatrist, a psych psychiatry because healing of the mind. And um, the smartest doctors were psychiatrists that dug up bodies and uh explored anatomic pathology. Um, ultimately, neurology diverged when psychiatrists discovered Alzheimer's disease, frontal temporal dementia, uh Lewy body dementia, Korsakov's psychosis. Um, and the highest, apart from being an academic and doing research, the highest position that a psychiatrist could aspire to is to be the superintendent of an asylum, a mental institution. However, there's nothing they really did that helped them. It was just providing what they thought was a humane environment. It didn't get people better. And then Freud came along and completely changed the game to a disease of the mind and trying to understand the components of it, the id, ego, super ego, and how those conferred mental disturbances. And that gave psychiatrists a way out of these uh, and they used to call them alienists. Psychiatrists were called alienists because they lived alien to society. Um, it gave them a way out. They could now have Holly Street practices or Fifth Avenue practices, and they could treat the worried well. Um, it was cleaner, nicer, better clientele, and charge better fees. Um, and that was terrible because they abandoned the responsibility and the responsibility for the mid to latter part of the 20th century was assumed by non-physician, mental health professionals, psychologists, social workers, etc. And um there is a contingent of what are called community psychiatrists, but psychiatry hasn't re-embraced this. They have there are not the majority of psychiatrists don't specialize in SMIs, serious mental illness, and they don't take insurance. And so when you say, how can we get more psychiatrists to be invested in providing what is the optimal kind of treatment?

SPEAKER_02 18:16

Um including the family, including the family, if possible.

SPEAKER_03 18:19

Well, the family is important for so many ways, and again, I don't want to go on too long, but there are all these threads that figure into this. So, psychiatrists can't treat people with schizophrenia alone, it is a team-based, multidisciplinary disease management approach. So you need to have a clinic with a scope of services, and the scope of services have to have a workforce that's trained, and there has to be a reimbursement system that's able to sustain it. But there's another thing which is even more insidious. As government, and this is particularly in the US, became more of a protector and solving the problems of the people in society. Um it loosened the uh motivation, the incentive, the obligation of families to stick by their infirmed relative. And uh when I was training, and since then it's continued, when a patient diagnosed with schizophrenia was admitted to the hospital, even the first time, uh the first week a social worker would begin to apply for Medicaid. And in order to qualify for Medicaid, you you your financial assets have to be below a certain level. And so the family had to deplete whatever could be attributable to the patient in order for them to qualify.

SPEAKER_02 19:41

That's still very true. That's still very true.

SPEAKER_03 19:43

So they became wards of society, and this is where a misleading observation is often thrown out for the wrong reasons. In underdeveloped or developing countries, they point to statistics of the outcome of people with schizophrenia is better. And the reason it's better is one, because the complexity of society and the demands on people are less, but also because the family unit keeps people. They don't let them become wards of society, they support them. And apart from medication and the psychosocial services, the support of a single individual who's a constant presence and is dedicated to the person's well-being is the most precious aspect of a uh of a treatment program. And there's countless examples. Uh, I point in the book to John Nash's wife, uh, who stood by him. If you have that, that by itself is worth uh, you know, 10 psychiatrists, you know, who were even at the top of their game.

SPEAKER_01 20:46

Right. I was uh I had a chance to serve with Fred Freeze, so I loved it in the book that another example you gave was his wife, Penny Frees, who helped keep him on track, and he was a brilliant man. So, yes, and we like to be those one people that are, we don't like to be, but we are the one constants in our sons' lives because we insist, but it's really hard to get in, as Mimi said, to the psychiatrist. Um, one thing I really liked about your book, and I liked many, many, many things about it, but I love the research that you have, you know, so much research. A lot of times on this show, we like to make statements, but you back up very strong statements with research. The another thing I really love about it is the fact that, as you said in your three reasons for writing it, that schizophrenia is treatable. So today, people, unlike our sons, people have a chance if they're in the first episode to get into first episode programs. And why could you tell our us and our listeners why that works so well and that people sometimes even recover? And what do you mean by recovery?

SPEAKER_03 21:59

Well. Recovery has uh is a term that really uh grew out of um the uh patient movement where they said um clinical medicine has done nothing for us and we're gonna pull ourselves up by our bootstraps and do it ourselves. And it said I can be symptomatic, I can be you know not able to function in the optimal way, but I can still have a meaningful life. Um and so it defined recovery in a very different way. Um, but if you want to define recovery in a traditional way, meaning the reduction or the remission of symptoms and the lack of progression of the illness such that it causes um disability that seems to be irreversible, uh that at this point can only be done by preempting it. And it's no different in that sense from the neurodegenerative diseases that that uh occur usually later in life. So there's a window of opportunity that usually is in the first five or so years from the prodrome till the initial years after a full-blown onset of psychosis and diagnosis that is really the time to have the most impact. Now, uh, it doesn't mean that game over. If you slip, if you if you descend down the slippery slope of progression and deterioration, it doesn't mean that there's nothing that can be done. Um, at all stages of the illness, uh, improvement is possible. I have some patients that I began treating in the 1980s when clozapine was being uh studied for reintroduction into American treatment, and they're they have a better life than I do. They have a social life, they go, they go to the professional sports games, they go to concerts, they need a lot of support. They have to have a supervised residence, they have to have a clubhouse to go to, they have to have rehabilitation programs to attend, but and they have periodic exacerbations of symptoms, but they do pretty down darn well as outpatients with these prosthetics. Now, okay, this is a this is going to be the shocker for for your program. First heard here, there has been for two centuries almost a uh vigorous debate among scientists and psychiatrists about what happens in the brain to cause this progression of the illness, where you go from having psychotic symptoms to uh that are treatable or suppressible to having those that don't respond to treatment persist at some residual level and also are joined by negative symptoms and cognitive impairment. What is causing this progression? We know this occurs with neurodegenerative diseases like Alzheimer's and uh phenotemporal dementia, cerebrovascular dementia. Um, it's the toxic proteins, it's the vascular deficiency. But literally thousands of studies, post-mortem studies and schizophrenia has never been able to find the footprints of what causes it. And that's led to a debate between people who believe it's all neurodevelopmental, meaning genes affecting the way the brain develops, and people that say it's a progressive illness, we just haven't discovered the basis. So, due to a study that we're currently in the midst of now, we've analyzed data and come to a conclusion that the progression that occurs in schizophrenia is due to accelerated aging.

SPEAKER_01 25:35

So wow. That is a shocker.

SPEAKER_03 25:41

In everyone's body, and including the brain, there's a maturational side uh process that occurs over the life cycle. You know, you're born, you become a toddler, you become an adolescent, you become a young adult, and in middle age, you begin to have an age-dependent decline in brain volume as you experience some uh atrophy of aging. Uh, but it was only 15 years ago that the Sirtuin genes were cloned, meaning these are seven genes uh spread across the human genome that define the lifespan of a human being. And every creature on earth has a defined lifespan. If you're a fruit fly, your lifespan is 24 hours. If you're a tortoise, it's 150 years. Um, humans 80, 90 years. So there's a process that causes this to occur. And uh many uh companies, not many, but uh companies now have in a way that's scientifically very credible and and rigorous, have begun to develop uh pharmaceuticals to slow or reverse aging. Um, so I'm not going to go into what the data was that uh pointed us to this uh conclusion, but um, we believe the lack of the footprints in the brain for why people with schizophrenia progress and become disabled in an irreversible way is because they have uh a process of accelerated aging. So it's occurring in what occurs to people under normal circumstances, but more rapidly. And as a result of that, they decline faster and they also become susceptible to the so-called diseases of aging, frailty, cognitive impairment, etc. Um, so uh we're gonna have a paper that comes out, we'll see how it's received, but um, it's it's it's really the first, I think, innovation in understanding what underlies the course of the illness. And it speaks to also the question that you raised before about uh our nomenclature and whether schizophrenia is the best way of thinking of it or whether it's psychosis spectrum disorder. And the reason I say that is because uh, among other distinctions, um, one of the major ones with schizophrenia as opposed to bipolar disorder or uh depression with psychotic symptoms is the progression and the decline, the intellectual deterioration is more prominent in people with schizophrenia. So uh, you know, we believe that there is some underlying component to their disease that uh is different, even though many of the symptoms are or are are are overlapping with these other diagnoses.

SPEAKER_01 28:24

Yeah, so um it's like breaking news because that's not in your book.

SPEAKER_03 28:28

You're exactly right. So a paperback, unfortunately, the book is uh gonna go to paperback next uh February. And uh I I want to add some information, including that.

SPEAKER_02 28:39

It's very exciting that that you include so much research in your book. We, you know, there's many things we talk about here on the podcast to help families who are just starting out in this process. If you're a new listener, our sons are all in their late 30s or older. So we've been at this quite a long time and maybe a little late for early intervention, but we always focus on on hope. And um one of the things I loved about your book is that it helped me to be better informed. And you do, you even say that in your book, the more a family can be informed, the more they can know how to help. And you explained really thoroughly about the previous thoughts about schizophrenia, but also that a lot of it has to do with dopamine, but it isn't just dopamine, then it's it's gambum and glutamate. So that was, and that's a totally different premises. And I can't, I would love to, but I'm not gonna ask you to explain it here, but just it was exciting to me to see that there's other research and other reasons why my son is cognitively impaired the way he is, and you know, is is lacking some of the join devi that he used to have. So, and this just shows that research continues to go on. So, due to accelerated aging, you heard breaking news here first. Let me ask you though, um I think you've already answered this, like whether true is true recovery possible. What do you mean by recovery? And I I think a bit of the answer is it depends on how quickly we catch it. Is that true?

SPEAKER_03 30:16

Yeah, how quickly we catch it and how how uh effective or how how how good the treatment is. So by the the best you can hope for is somebody gets sick, usually in the window, age, age window of you know, adolescence, young adulthood, they get treated promptly, their symptoms uh uh uh remit and they don't have any recurrences and they live a normal life. Okay. And it is a blip. It sounds like it's pie in the sky, but you know, I know patients, I've treated patients that have had I I follow them on Facebook, and I'm amazed. So it is possible, and people will have would then say, well, if anybody recovers, they didn't have schizophrenia. You know, it's a kind of a tautology. Um, so it's not true. And even at more advanced stages of the illness, a lot can be done because much of what I do when I see patients who are already 10, 15, 20 years into the illness is to undo things that shouldn't have been done in the way of treatment or uh you make revisions in the diagnosis. So I again I don't want to throw my colleague under the bus, but in I mean, you nobody ever tells you they go to the second best doctor. You know, everybody thinks they go to the best doctor. Uh but in psychiatry, people will complain, oh, the doctor really doesn't do anything. And um, the variation in quality is not what it should be. And so, how do you find good treatment? You know, you have to be family members have to be very proactive to do this. And the sad simple fact of the matter is the optimal forms of treatment for people at all stages of the illness is not there. You can't you can't find it in one place, you have to cobble it together. And this one patient of mine that I was referring to uh previously, so in the late 1980s, this is a young American princess from Great Neck, who's was going to college and she got sick and she didn't respond to treatment very well and ended up in state hospital and very likely would have spent the rest of her life there, or at least a good part of it. And uh her mother, who was extremely aggressive, identified uh our program as studying clozapine, thought that might be so she was one of the first people that was treated with clozapine, she got better. Um, and there was no residential facilities to be so she spent several years in inpatient uh state hospital. She couldn't, even if she was better symptomatically, she couldn't just you know go live in an apartment and attend some outpatient clinic. So, and there was no residential facilities in New York anyway. So she found Gould Farm in Massachusetts and she went there. And Gould Farm has this supervised component that's you know in a rural area. Then they have step-down programs uh that are in suburban Boston, and then she's now in an independent apartment living with a roommate where somebody visits her once a week. But the mother then cobbled together uh and using every means of availing herself of um government-sponsored uh uh uh resources to get a ride. You know, there's rides that were offered. Now, Massachusetts is more progressive than most places, but the point is that she would go to Boston University, um, Bill Anthony's program one day. She volunteered at a job on Mass Ioneer another day, she went to a clubhouse at Gold Farm another day. Uh, and the mother cobbled this together and did it in a way that was financially viable. Um, but you know, she had this dogged persistence and this um, you know, relentless you know desire to to and and it worked, but not everybody can do that. And specifically if you're living in places that are more remote or rural. So the infrastructure, the workforce, the financing system does not lend itself to do it. Right now, what I have, I have like a small component of a practice which is treat and this is important to talk about. It's also a kind of a third rail issue, is is treating people or trying to treat people who are adult children, supported dependent financially on their families, and have no insight into the fact that they're ill, won't accept treatment. And I will do various things, simply go and try and meet with them, have lunch, and you know, build a relationship in the hopes that that'll eventually and also monitor that their behavior doesn't get out of control so they get injured or hurt somebody. Um, or uh in other instances where the person, a 27-year-old girl, uh uh high-functioning immigrant uh uh Russian family, um she won't speak to me, she won't even speak to her family. So we we we get in a car, we get a car, we we follow her around because she's always busy. She says, I have too many things. I have an appointment here, I have an appointment there. And you know, her family's thinking, what is she doing? She doesn't have any business or and she just wanders around going into places, and we would go into the places after she left and we would ask the proprietor, uh, does this person come in regularly? She says, Oh, yeah, she comes in. She's kind of odd. I think something's wrong with her, but she doesn't do anything bad. Um, and so you know, you're relegated, and all this speaks to the issue of how can you impose treatment on someone who doesn't want it. And um, there's a principle called parents patriae, which means uh parent of the state that was uh used as the reason for civil commitment previously, that um if somebody was in a state they couldn't make they couldn't make good judgments, care for themselves, then that justified doctors and family uh imposing treatment over their objection. But because of the abuses of psychiatry and the snake pits of asylums before, uh that was changed in 1970, and now it's imminent danger. Um so to do something, when you say what can be done to change things in terms of getting better residences, having a better scope of services to avail oneselves to, having more psychiatrists involved and and uh uh um and adapting, you know, a mentality of the kind that I was describing in the book. Um you you also need to deal with what do you do with people that won't accept treatment, but they're not they're not they're not breaking things up and hurting people right now, although they they could at some point.

SPEAKER_02 36:55

Um, how would you answer that? Because that's a big question.

SPEAKER_03 36:58

Yeah, I well, my answer though, unfortunately, gets met with a lot of boos and cat calls.

SPEAKER_01 37:03

Um, I think that I don't think you'll find that with our audience, um, and or with any of us.

SPEAKER_03 37:10

But not there's a lot of people in Nami who feel that way. Um and so you know, the the way that that's referred to uh among similarly minded people as myself is you we're allowing people to die with their right son.

SPEAKER_00 37:24

Yes, we've used that phrase often ourselves. You know, um given that our sons are older, and all three of us are basically jealous of first episode participants. You know, I see um um patients of our uh Mindy and my doctor, Dr. Leitman, who, you know, they they got with Dr. Leitman at 17, 18, 19, and they're back in college and they're living lives. And you know, my poor guy's 37 years old. He was, you know, if not not untreated, but poorly treated for 15 years. And there's no way to get that time back. And I'm just wondering, you know, for people like us who all that time has elapsed, what does the help optimally look like? And what what can we do? Because I just feel like we're just running, running, running, trying to pay catch up. And one other thing I just wanted to say is it's a good thing that that patient you just described was a Jewish American princess, because you basically need to be royalty to afford a place like Gold Food. And you know, we just sit back and look at these places and long for them, but they're not a reality for us.

SPEAKER_02 38:44

Right. And and you know, if there's any listener who doesn't know what Jewish American princess is, it's a it's an old term that we're not talking about a real princess. It's just a it's just it's a term, nobody means anything by it, but it's just something that is used to describe people who grew up with a lot of money and like that. That's kind of what that it is. It's meant as a joke. We have good intentions here. We're not meaning to despair anybody or anything, and it's not a real princess.

SPEAKER_01 39:11

Thank you. I'm glad you just correctly define that because when I get a lot there, I was like, did I meant stupidity there? But what I didn't mean is um is the expense of Gould because I'm uh co-chairing a group here in Minnesota where we're trying to look at how the fields and how can people um deny and peace people like that when our children are still living but need a lot of help and they need someone. I read your book and then I went and looked at Google and I thought, okay, the model, I'm gonna look for them in Minnesota, and it's not perfect, but in a price tag, um, we quickly discovered it. So now we're looking at other things like maybe two people could live in an apartment instead of just the one that the mental health system puts forward to everybody, and then they're so lonesome they spiral down and that sort of thing. But can you give us any ideas about housing that wouldn't be so expensive, that a model that could be used by lots of people that would work for people with schizophrenia?

SPEAKER_03 40:17

Well, there are models. The problem is they're not very numerous, and they also are expensive unless they're somehow subsidized. I mean, another place is called Cooper Reese in North Carolina. It's kind of a holistic philosophy, but they uh have a medical uh management approach as well. Um and these places are great, but they're so few. Uh they also entail cost. Um, and I I like I say this is this is uh I consider this a civil rights problem is that you know imagine if you have breast cancer and you go to the hospital and they say, well, you know, you need a lumbectomy and you need radiation and you need chemotherapy, but we can only do a lumbectomy. Um and that's what exists with uh uh severe mental illness and schizophrenia. Um how you can manage to deal with it, um, it requires you know a lot of work and ingenuity to put it together. I think I think it begins though with a consultation, a second opinion, if you will, with somebody who is more progressive and uh enlightened in their thinking. And I'm gonna, I guess, include myself in that group. Um, and okay, here you are at whatever stage of your illness, and here are your you know symptoms and limitations, okay. Um what can be done to change that? So the first thing is you look at their treatment regimen. Um, then you look at the whatever ancillary services they're receiving in the way of you know social skills training, vocational rehabilitation, socialization in a clubhouse, uh, case management, is substance abuse part of the problem? Um, what is their residential setting? Do they have any uh social network in terms of uh of people or family that so you have to do like a 360 evaluation, and then you have to figure how do we create a uh an approach? And again, this is disease management that addresses the needs in a way that can help. And they'll never be back to how they were before they became ill, but they can be a heck of a lot better and a heck of a lot happier if it's done. But it requires you know, finding individuals that uh are oriented towards this, can do it in an affordable way, and then taking it to the next step, which is identifying the um services. Now, you mentioned one other thing that's a uh a niggling problem. Um parents who have infirmed children um and and oh, by the way, the the thing that's embedded in this whole discussion is that while you know whether you call them Jewish American princes or spoiled or trust fund babies, whatever, um uh when it comes to you know minority communities, forget it. I mean, that they're in a whole different situation of neglect and inferior treatment. Um, and uh that's just sort of accepted as the way of the world, which is you know just shameful.

SPEAKER_02 43:24

Um, we we stand against that, just if you know, they we have tried to have some episodes dealing with the disparity there, and it's not just in psychiatry, but it's across it's across the medical field. And breastfeeding, childbirth, cancer, you know, there there's many, many disparities. And I think that's an issue for another time, but it's absolutely true, and you do address that in your book, me, me what I just want to say um something hopeful.

SPEAKER_00 43:52

I was the the USC um fellows graduation for psychology. This weekend, because my nephew is a um has just become a pediatric psychiatrist. I think he looked around our family and decided we better have an in-house psychiatrist. So he became one. But the thing that I was very heartened to hear and to see is first of all, in a city like LA, the demographic of all the students was very varied. But, you know, it was a small graduation, and these people were able to talk, and they were also able to give very personal introductions. And these younger doctors coming up are keyed into this stuff. And the doctors from different demographics in terms of race and all of that are really focusing their energies in changing that. I found that very hopeful.

SPEAKER_03 44:45

I don't want to be the wet blanket, but um they have to sustain that. You know, uh your kids or young people are very idealistic, and then they get married, they have babies, they gotta, you know, expenses and reality sets in. I mean, the the millennials or the Gen Z or whatever it is, you know, they may be different. Uh, I hope so. Um, but uh the thing I was trying to uh get at is so people set up special needs trusts to uh cover the cost of caring for their loved ones once they're they're gone. The problem is, although lawyers can set up a special needs trust to deal with the financial issues, it doesn't ensure that they're gonna get good treatment. There is not care planning that's uh associated with it. And in some cases, there's actually finagling um that goes on uh in a way that you know whoever is naming the executor. Um so one of the things that uh uh you know, some years ago we tried to do uh at the uh instigation of family members and then um a law firm that had a lot of big estates and trust practice was uh consider creating a uh a company or an entity that provided not just the um legal and financial services, but also involved care planning. So, what does an individual need, depending on their geography, their illness, their level of severity, etc., and to uh uh propose what the necessary treatment program and then potentially to monitor as uh time went on that they were actually receiving it. So that got hung up. Why did it get hung up? Turns out that the only that the law says in order to have um a special needs trust or something like that, you have to be a trust company or a bank. So uh a law firm that wanted to do it would have to become a trust company, or if mental health providers wanted to engage with the law firm to do it. Um, and you know, for whatever reasons, that seemed to have been a stumbling block. Um, so the the the point that I try and make, and I hope this comes out in the book, is that there's things in the world that are complex and potentially unsolvable given our current level of knowledge. Maybe it's global warming, maybe it's distribution of wealth, maybe it's uh uh you know terrorism. Um this is not an unsolvable problem. You know, we know what could work, we just don't do it. You know, in some things, if you have ALS, uh only a scientific breakthrough is going to change your prognosis. Uh, if you have schizophrenia, I would say the vast majority of people who have the illness could be doing better than they are simply because of the limitation of the treatment they've received.

SPEAKER_01 47:42

Absolutely. That's a powerful, powerful message in your book. And I really like that you included so much about the disparities uh amongst people of color and people like ourselves. And that was a kind of powerful part of the book. Um, I'm sure Randy's gonna tell us pretty soon we're almost out of time. So I'm gonna combine two questions that I have. And um, maybe you can be shorter on it so we can get to. And I know maybe and Randy have more questions too. Um, so we had one guest on um earlier to talk about the relationship between marijuana and schizophrenia psychosis, and Randy pinned it down so that he had to confess the research said marijuana common psychosis, but he didn't know about research that would show that it would also come as schizophrenia. So you went further than that in your book. So could you address that? And then also maybe at the same time you could address the relationship between drug use treated versus untreated psychosis and dangerousness. We hear a lot of people that like to think they know what's causing dangerousness, is it people with mental illness, is it something else? So, what is the relationship between cannabis and schizophrenia? And what is the relationship between drug use, not taking your meds, and dangerousness?

SPEAKER_03 49:09

Well, those are controversial, but actually very easy questions to answer. Um so uh the evidence is indisputable that cannabis uh so if you have a constitutional or genetic vulnerability to for schizophrenia, um, cannabis will increase that likelihood of developing it. Um, it is a a precipitating uh recreational intoxicant, and it's even more so now. So I'm when I was in college, not that I ever inhaled, you know, we would smoke naturally grown cannabis, and the cannabis has you know 100 plus uh constituents uh elements in it, but the only one that's psychoactive is THC. And the concentration of THC in most natural, even the most potent forms, you know, Vietnamese or Maui Wowie, um was two to ten percent. Now, if you go to dispensaries in California or in New York or Colorado, uh the THC concentration is upwards of 80 percent. Um, and so the frequency, population frequency of schizophrenia is increasing and it's going to increase.

SPEAKER_02 50:23

Um, in terms of And this is something you changed your mind about, as I now have as well, right? You didn't used to think, yeah.

SPEAKER_03 50:31

Even more than that. Um uh it used to be thought that uh if the drug caused a toxic psychosis, that it went away when the recreational intoxicant uh was cleared from the body. But it's now known, and I mentioned it in the book, that um uh certain drugs used uh chronically or in uh large doses can produce enduring psychotic symptoms that for all purposes resemble schizophrenia, and specifically the drugs are methamphetamine and fencyclidine, PCP. So those can induce it in people that have no vulnerability, but cannabis provokes it in people who do. Um, the other question that you had was about uh treatment and dangerousness. So that also the evidence is very clear. Um advocates of mental illness are often you know indignant about protesting that people with mental illness are violent. And they're true, it's true in a sense, you know, of all violent crime in the United States, uh 4% is perpetrated by people with mental illness. You know, most of it is uh crime, gangs, greed, uh, you know, uh crimes of passion. But if you look at violent crime, as it's defined by the FDA, FBI, um between 25 and 40 percent are uh perpetrated by individuals with mental illness, mostly young males, mostly psychotic disorders, and almost always untreated. And um, these people are not doing it because they have a grudge against society, they're not doing it because they have their ideologic zealots, they're doing it because they're impelled by their symptoms. And I've consulted on a number of cases. Um Jared Lofner, uh uh James Holmes, um, the Korean student at Virginia Tech, uh Wendell Williamson in North Carolina. Um, these people, after they're treated, uh look back and they say, I didn't know what I was doing. You know, I mean, you know, Ellen Sachs, who's at USC, um, has a wonderful uh description of psychosis. She says it's not an on-and-off switch, it's a rheostat. And when it's at its worst, you you know no reality except you know, the delusions, the hallucinations in your brain, in your mind. Um, when it's at a lower level, it's like a background radio that you hear and maybe a distraction, but it's not driving your behavior. And if you interview these people after they're treated, you they tell you the exact same thing. You know, I just thought this was happening. I no way I could distinguish it. And, you know, now I see, you know, it was all part of an illness.

SPEAKER_02 53:27

Wow. So there is uh and and uh Mindy was right, we are running out of time. We have we have more questions, although a lot of them you kind of answered as you as you expanded on your answers to the other ones. And I I do want to ask you one more, which is just about you. Like why why schizophrenia? Why is was that the thing you chose to specialize in as a psychiatrist? I mean, we're so glad you did, but you know, tell us why why did you become so interested in schizophrenia specifically?

SPEAKER_03 54:03

Well, uh, you know, at some point in my early in my training, I I wanted to pursue academic psychiatry and research because I, you know, my intellectual curiosity or some you know, one of my uh advisors said, um, do you want to be depends on which side of the podium you want to be on? You want to be in the audience or you want to be on the lectern? Um and you know, I I was just intrigued by trying to answer questions. Um, but I I was actually initially drawn to depression. Um, but then two things happened. Uh one was um I had a patient, and this is a very common story, who was a uh college student in Iberleag school uh from a you know pretty affluent family, and he had a uh his first psychotic episode. He's then hospitalized, he gets better pretty quickly. And he goes back to he doesn't want to wait and take a semester off. He goes back right away and he finds the medications are uh dulling his thinking and he doesn't like them, and so he stops taking it, he relapses again. And uh, you know, this is this is this is a story in the book of Jonah. Um, and before you know it, you know, his life is irreparably changed. Um, and I'm thinking, whoa, uh this is pretty bad. And and there was this glib attitude of psychiatry at that time, this is circa 19, early 1980s, late 70s, that um this glib attitude of letting people learn the hard way by relapsing and learning not to not comply it. It's like letting somebody who has you know uh cerebovascular disease not take their you know anticoagulant or or or or blood pressure. And then the other thing was, and this is in the book, um I came home one night and I was gonna read myself to sleep like I usually did, and I picked up um The New Yorker and read, I stayed up like till four in the morning reading uh a four-part series by Susan Sheehan called uh There's No Place on Earth for Me. Is there no place on earth for me? The story by Sylvia Frunkin, a fictitious name. And it was the most, it just, it just like uh I I had such an impact on me. I'm saying, how could how could somebody have suffer like this? I mean, it was it was grotesquely funny with the things she did, but it was misery. And all of it is avoidable or much of it is avoidable. And then, you know, this this wasn't the reason I pursued it, but in the book, uh, you know, I described in the course of writing it these things about my own family. I didn't realize um, you know, that my great aunt had been in a hospital. I visited on a field trip when I was in high school, and um nobody ever talked about her. And then so you know, you people say people think schizophrenia is something that happens to people over there and it's remote and mysterious, and that's just not true. Um, so at any rate, uh if you wanted to take on the biggest challenge, because schizophrenia is kind of the poster child of mental illness, that was it.

SPEAKER_02 57:10

Wow. Well, Dr. Jeffrey Lieberman, thank you so much. Maybe you'll come back again and answer the other 100 questions we had for you. Well, we've gone to an hour, and uh the book is Malady of the Mind, Schizophrenia, and the path to prevention, which is, and it's more than just prevention, it's the path to treatment. It's about the peeling the onion, it's about how do you get to the diagnosis, the importance of the family stories, careful, careful, meticulous and supported research, your own experience, and you have such respect and love for your patients that it shows through in the book. So we highly recommend it and we we thank you so much for coming on to Schizophrenia Three Moms in the Trenches. It's been an honor and a delight.

SPEAKER_01 58:07

And I want to thank you for your outspokenness in your book. Um, I think you'd fit right in here if you were one of us moms, because we speak our minds. And in your book, despite the professional that you are and your professional demeanor and your talking, you got some pretty strong statements in that book. And I love every one of them, and they're backed up by research. So everyone should definitely read your book. Thank you.

SPEAKER_02 58:34

Well, maybe last words, and then Jeff, I'll let you have the final, final word.

SPEAKER_00 58:40

We really appreciate it. And this has been fascinating.

SPEAKER_03 58:43

Thank you. Well, I'm happy to come back whenever you want. But what I would say is that um one thing that's just been enormously beneficial uh to the um psychiatric community and particularly to the research community is the patient advocacy movement. Um, the fact that uh people like yourselves have taken it upon themselves to you know sort of speak out and to uh try and spread awareness and also point to just unacceptable deficiencies that exist and to make people aware of something that they just don't get uh sufficient information about. So uh keep up the good work and uh I would say uh it's a partnership. You know, the mental health professionals have to work with you in trying to move things forward.

SPEAKER_02 59:27

Thank you so much. Hey, thanks for joining us for this episode of Schizophrenia Three Moms in the Trenches with Randy Kay, Mindy Gryling, and Miriam Feldman. To get in touch with Emma Sor to learn more about our books, please visit our websites at MiriamHyphenfeldman.com, MindyGryling.com, or randyk.com.