“Into the Light - Meaningful Recovery From Psychosis”, The Film -Ep. 94

Guests: Angela and Michael Brisbin

(plus 3 Moms updates and we read some Fan mail!)

INTO THE LIGHT Meaningful Recovery From Psychosis, a 60 minute documentary discusses how to  achieve Meaningful Recovery from Serious Mental Illness with education, medication and advocacy.  

A message of hope and real help, the film’s topics include: barriers to treatment, the underutilized medication, clozapine, and the importance of a supportive community. 

There are over 25 interviews of patients, parents, leading medical professionals, healthcare professionals, advocates – from across the USA, including:(Bolded names have been guests on this podcast too!)

 Dr Xavier Amador, LEAP; 

Dr Lisa Dixon, CUIMC; 

Dr Ken Duckworth, NAMI; 

Miriam Feldman, SCZ: Three Moms in the Trenches; 

Dr Rob & Ann Mandel Laitman, TEAM DANIEL;

 Dr Jeffrey Lieberman; 

Dr Jonathan Meyer;

 Lynn Nanos,

 Michael Orth; 

Bill Rodgers, The Marathon Runner; 

Dr Fuller Torrey; 

Elyn Saks, 

Rachel Streiff; and 

Bethany Yeiser, CURESZ. 

Narrated by Tony Shalhoub and Brooke Adams. 

Sponsored by TEAM DANIEL Running for Recovery from Mental Illness, a 501c3 charity.

Angela Brisbin 

Angela is the Lead Administrator for Team Daniel and the Clozapine Community Facebook group. She is the Associate Producer for the documentary Into the Light: Meaningful Recovery from Psychosis. She is a full time nursing student pursuing a Master’s degree as a Psychiatric Nurse Practitioner. Her mental health advocacy includes serving as a board member for NAMI or Greater Kansas City, as well as being a NAMI-certified family support group facilitator and “Ending the Silence” presenter. Angela also serves as a mentor for the CURESZ Foundation. 

In 2016 Angela’s father Gary who had schizophrenia passed away and her son Michael was diagnosed. 

Michael Brisbin

Angela’s son Michael Brisbin has been in meaningful recovery from schizophrenia for six and a half years. He is a full time college student and works part time as a campus librarian. He’ll graduate in December with a Bachelor of Science degree in Social Work and a minor in Psychology. He plans to continue his education and obtain a Master’s degree as a licensed clinical social worker and work in the mental health field.

Michael is on the Board of Directors for NAMI of Greater Kansas City, and has founded NAMI on Campus groups at his previous community colleges and his current university. He also facilitates a weekly NAMI young adult Zoom support group.

Links:

https://www.intothelightmeaningfulrecovery.com/ 

https://www.teamdanielrunningforrecovery.org/ 

https://www.facebook.com/groups/www.teamdanielrunningforrecover.org/?ref=share_group_link 

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

Randye and her book: https://www.randyekaye.com/

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

Transcript

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SPEAKER_03 0:00

I think our main goal was to give families that were struggling with, you know, serious mental illness real help and hope. We just we want to share that there are effective treatment options. They're not used as often as they should be. But when they are used and they're and they're used correctly, there really is a high rate of response to them.

SPEAKER_02 0:24

That's the voice of Angela Brisbane, one of the producers of the new documentary, Free for Anybody to View, called Into the Light. Angela is our guest today, along with her son Michael. Diagnosed with schizophrenia and shares about his journey and his recovery as well. This documentary can change minds and change lives and give new hope. Welcome to our podcast, Schizophrenia. Three moms in the trenches. From the place where schizophrenia and real life collide. Welcome back. This is episode 94. After a bit of a hiatus, some of the moms have been traveling and some of them had been home watching grandchildren, but we know who's who. This is very exciting. First of all, I'm so glad to see you guys. It's, you know, we text and we're in touch, but it's just really nice to all be here together in the same Zoom room.

SPEAKER_04 1:28

It is. It is.

SPEAKER_02 1:30

So this episode is called Into the Light: Hope, Help, and Barriers. It's about a documentary that's been in the works for a long time. And we'll be bringing on two guests who are instrumental in this documentary and featured in this documentary, along with some other people you see here on the screen. And this is a very, very important film. And I want to give it as much exposure as possible. But before we do that, it's been a while. So let's can we just go around with a quick update as to how our loved ones are doing, or even just like what you did for fun in the five weeks. Mindy, why don't we start with you?

SPEAKER_04 2:12

Yeah, well, I was in Italy, as you know, for 10 days. And while I was gone, we opened and had the ribbon cutting for our new county Clubhouse International. So I missed that, but I was there in spirit. My cousin and I toured Italy with uh my granddaughter and her friend, and we ended up in Triesta, Italy, which I we will have a program on later. So I won't go into it, but suffice it to say, they have a better mental health system than we do by far. The one thing about the update about Jim, he and I are actually, I've talked before, he has his first passport. We're going overseas in two weeks. And I think he can still do that. But in the meanwhile, in the past week, he's been where Mimi and uh Nick were, I think was that a year ago, Mimi or so? Two years. Where was it two years ago? Wow. Well, anyway, he kind of looked dead in his bed with what we didn't know was pneumonia. And um I know I've heard it, you know, if you have infections, your clozapine levels can go sky high. But until it happens to your own kid, you kind of forget that. You know, you just can't remember everything. So so um we didn't recognize it. I thought his girlfriend died last week. The one that I wrote about in the book, the girlfriend from hell, who got him into crack, the two of them burglarized our house for drug money, etc., she died. So, quite frankly, even though he hasn't seen her for four years, uh, and it was probably an overdose, but in he hadn't seen her for four years. But even so, I thought he was depressed because of her. So when he didn't get out of bed for three days, when he slept continuously, he didn't eat, um, and he didn't shower, uh, I didn't recognize it as a clozapine poisoning crisis. I thought it was depression. So I thought it would work its way through. Roger and I actually went out to eat one night and we came back and he was even worse. And so we had to call the ambulance and get him there. And then it was a fight at the hospital, just like Mimi went through, to get him his clozapine, because their procedure, their standard regulation is to have him stop his clozapine for three days while his clozapine level goes down. But I contacted his doctor, uh, Dr. Robert Leiteman, as we all know, um, that are regular listeners here, and he sent a text that said, no, don't stop with like four exclamation points. And I'll capitals too. Yes. So I had to battle the um the hospital, the doctors, and finally I had to make them copy down, including the exclamation points, Dr. Leitman's text into the record. I said that I agreed with that. And Jim, if he could walk or talk or had any sense in his brain right at the moment, which he didn't, um, would want to do what Dr. Leitman said too. And still they didn't do it. Um, so I had them uh talk to Dr. Leitman. I set up an appointment, and they tried him four times, and then they said they couldn't, they didn't reach him, but they didn't leave a message because they couldn't because of HIPAA. So, you know, that we could have a whole nother program on HIPAA and how it's it's misused, and that was certainly a misuse of it. So we got it straightened out. Jim is probably coming home tomorrow, and I think he can make this trip to the Isle of Man. We have I have arranged for a wheelchair for him, which I think will be kind of cool because then I can skip the lines too. Wow.

SPEAKER_02 6:02

Wow. So, you know, people who don't go with families like our listeners go through do not know the meaning of mama bear. I don't think so. Um I'm so glad that he's okay. And I know me and Nick went through something similar, and it's just there's so much to know, and there's so much to learn, and there's so much that changes. So glad he's okay. Mimi has everything with you, fun stuff, and you know, because you you've been traveling too, so fun stuff.

SPEAKER_00 6:32

Uh I went to um Denver to the NAMI National Convention with Angela and Michael, and we presented our new documentary that we're gonna be talking about that I was a producer on, and it was well received and very exciting. So that was great. And next week I'm gonna meet you, Randy, in Baltimore, where we're gonna go to Johns Hopkins to the Schizophrenia Summit, and we're gonna do a live podcast from there.

SPEAKER_02 7:00

So right, and Mimi can't make it, so we'll have a yeah, so we'll have a substitute third mom, Laura Pogliano, a friend of the podcast who's been on the podcast before. We're gonna do it in Laura's apartment, and I have my husband with me, and he is working on engineering the session so that you and I can be in the same screen with separate microphones, and we'll figure it out.

SPEAKER_04 7:20

I think that's incredible. And I should add, because I I'm on the board for Schizophrenia and Psychosis Action Alliance, I was also at the since we last met at the DC conference that they held that was incredible. So we can maybe talk about that a bit next time too.

SPEAKER_02 7:36

Absolutely. I I I can't find my paper to make notes. Wait a minute. Here's paper, here's paper, ta-da. All right, so we're gonna talk about HIPAA. Every time we have an episode because HIPAA and the and and the uh yes, the DC, the alliance in DC. I'll know what that means. And we'll we'll talk about this later. All right, awesome. And Nick is okay, Mimi?

SPEAKER_00 7:58

Nick is good, not the best he's ever been, but you know, there's highs and lows.

SPEAKER_02 8:03

Yeah, absolutely. Um, so quick update for uh for you guys on uh my uh my son, who we call Ben, for the purpose of this podcast. He is currently in a jail diversion program. He is no longer incarcerated, and I have to say, you know, for those of you who've been following the podcast, you know that um my son was going down a hard road uh and marijuana was part of that, and it wound him up in jail. Not prison, but jail, free trial. Right now we're in a good spot. I mean, you know, I again live in the moment. We've made some more good memories. What I love to believe this is a turning point that'll change the rest of his life. Yes, I would love to believe it, but you never know. So focusing on what's good. He has been six over six and a half weeks in a very structured program that I love. He has housing help, case management, um, a therapist who doesn't think he has schizophrenia, but I'll talk to her, uh, thinks he has Asperger. I bet you, I bet you will. I will. I have to do Mama Bears. What do people do without mama bears? I know, but you know, of course, my son wouldn't want that. But anyway, you know, we have our anyway. But three times he has earned passes to come visit the family. And you know, Ben sober and clean is very different from Ben stoned. And I think right now I would say that this experience really, really scared him. Am I gonna predict the rest of his life? I am not. But it's another instance of thought I lost him forever, and now he's back for a while. So actually, we just went today to the dentist. And by the way, if you're new to the podcast, all of these things we're talking about Dr. Leiteman, conservatorship, Mimi's experience when Nick was ill and had clozepine poisoning. Like uh all of these things are episodes that you can look up and and see. We have more episodes coming up about these things. We do have a lot of people. Including the dentist that you just mentioned. Right, including the dentist. So um I uh got an extra medical pass to take Ben to the dentist today, and I do believe he's gonna go ahead with the plan to have his teeth have done what needs to be done so that he can be proud to smile again. Sometimes broke in jail. So, you know, one one day at a time, but anyway, you know, if if you've been if you've been thinking, oh, you know, Randy's been is done for, we got a little re we got a little revival. We got a little revival. And he's you know, he would never believe this, but he is thriving under the structure. He's thriving under the structure.

SPEAKER_04 10:53

So this is real time good news.

SPEAKER_02 10:57

Yeah, it re it really is. And my hope, and I you know, I had a I had a goal this year to think of best case scenarios, even if they're wrong, I'm wrong, but at least I can live in hope. My hope is that this experience will have scared him enough to turn him around. So we'll see. Meanwhile, we've made some good memories. I got to see his nieces and nephews and his sister, and um, he does not have access to his phone or any of those things. I'm controlling everything, which is uh kind of nice, but also a pain. So you know how that goes. So anyway, that that is our update, and thank you. I do also want to mention that if you follow us, you know that you can write to us, look in the show notes, you can find any of our websites. But there's a new feature on Buzz Sprout, which is our podcast host, and then it goes on to Apple Podcasts and Google Podcasts, or as they say, wherever you get your podcasts. But on our Buzz Sprout Schizophrenia Three Moms in the Trenches, there's a place where you can click in the show notes and write us fan mail, which we love. The only problem is we can't answer it, so all we can do is read a few on the air. And what I'd like to do is, you know, we've got about six pieces of fan mail, but I want to honor those who took the time to write. And so I want to do a a shout out to a listener to Victoria in Los Angeles, California, who said, I just discovered your podcast and it's been a lifesaver. She goes on to tell us her story, and we'll be, you know, be happy to talk about that. But just a shout out to a listener in Aurora, Nebraska, who says, I just want to say thank you for your podcast and the hope you share each time. I wish I had found your podcast sooner. I feel more empowered and able to feel hope where we are now with my son and his restoration of competency in preparation. And she also has a son who's incarcerated. But the that people are finding hope, and I will read more next time. Just you know, does us.

SPEAKER_00 13:04

Yeah, I have to tell you, Randy, at um the NAMI convention and um Mindy too, I was a celebrity. I mean, people were coming up to me. Are you one of the three moms? And one of the things they kept asking about is how Ben is doing. Oh, I'm sure everybody will be happy with the news today.

SPEAKER_02 13:26

Yeah, good. So thank you. Thank you for that. Yeah, it's and we'll see what happens at this at the schizophrenia symposium. And one of these days, the three of us will be in the same room in person. We will look for that. All right. So, speaking of the NAMICON, and by the way, if you're listening and you don't want NAMI is, it's the National Alliance on Mental Illness, and they just had um their yearly convention, NAMICON. And we do have episodes on what helped us so much, especially the family to family educational series. So look for that episode as well.

SPEAKER_04 13:58

And in the Midwest, we say NAMI.

SPEAKER_02 14:01

NAMI. I, you know, I think everybody says NAMI, but enough people say NAMI that I I slip. I did I I know it rhymes with mommy, Nami, mommy, Nami, mommy, Nami, mommy. But of course, shout out to the dads. All right. So um, Angela and Michael, you can go ahead and turn your your camera on. I want to welcome you. Uh thank you so much. Hello, so nice to meet you. Joining us today is Angela Brisbane and her son, Michael. So I'll tell you a little bit about each of them, and you guys are going to tell us about this documentary. But I will, as by way of introduction, say that this documentary, Into the Light, and I'll let you tell us how we can see it. It discusses a way to achieve meaningful recovery from serious mental illness and schizophrenia by using education, the right medication, and advocacy. And it's really a message of hope and help, and also cover some of the barriers we're still facing. Angela is lead administrator for Team Daniel and the Clausepine Community Facebook group and associate producer for the documentary and a full-time nursing student getting a master's as a psychiatric nurse. That's gonna be amazing. And Michael, you have been in meaningful recovery for six and a half years from schizophrenia. Michael's a full-time college student working part-time as a campus librarian, some of my favorite people. He'll graduate with a Bachelor of Science in Social Work and a minor in psychology. So welcome, welcome to both of you.

SPEAKER_01 15:33

Thanks for having us.

SPEAKER_02 15:35

Thank you. We're honored to be on the on the show. We're honored to have you. So we could probably spend 45 minutes hearing Michael's story, but we're we want to aim toward the documentary. Could the two of you, I'm sure you've told your story a lot of times, could you give us like a three to four minute version of where you've been, Michael, and how you got where you are?

SPEAKER_03 15:57

Sure. Um, why don't I I'll start and Michael can fill in gaps if he feels like I'm missing anything. Um, so first of all, my father had schizophrenia, and um he he was diagnosed when I was little, and then my mother and I moved out of state, and so I would visit him in the summers, but I didn't see the progression of his illness. You know, I just basically my dad was a um, you know, worked full-time, he was a teacher, he had a owned a big successful business, and he was, you know, a one father, and then all of a sudden I didn't get to see him anymore because his visitation was taken away. So I didn't see him from the time I was seven until I was a teenager. And when I went to see him as a teen to visit, he looked like a completely different person. Um, you know, the the medications and the illness itself had dramatically changed, changed him. Um, you know, he was feeling handsome and healthy when I remembered him as a child. And then when I went back to visit as a teenager, he was, you know, he had the the shuffling walk that so many of the medications, you know, do, and the rigid muscles and muscle atrophy, and um he talked slow. He was just he was just like a completely different person. Um, in fact, I didn't even, you know, recognize him whenever I saw him. He looked so different. So when Michael began to get sick with um, you know, and he was developing schizophrenia. I didn't know the pro-drama phase that they go through. We knew something was wrong because he was sleeping a lot, he seemed to be depressed, his personality started changing. He had always been real easy-going, very kind and considerate, he loved everyone, and then sometime during the beginning years of high school, he started becoming um irritable, uh, he started isolating, he was real negative. Um his cognitive function started dramatically declining. At 15, he had been offered a full-time scholarship to stop going to high school at his high school here in town and move to Northwestern University and earn a high school diploma and an engineering degree at the same time because his ACT scores had been so high from junior high. Wow. Yeah, we we knew something was wrong, but we had no idea what, but we thought he was depressed, or we just really didn't know, so we didn't even consider the scholarship. And by the time he was a senior, his ACT score had dropped 15 points. I mean, it was a dramatic, dramatic drop. But we didn't we didn't know it was schizophrenia until after high school, maybe. Um, whenever he came home from college, he filled his first semester, he came home from college. It was very odd too, because he was always in gifted classes straight aced. For him to fill all of his classes was strange. We didn't really know what was going on. But on um we noticed that he was like covering his ears when the radio and the TV was on, and then he started having delusions and he was vocally, you know, talking about his delusions, and that's when we realized schizophrenia. So what once he's you know, obviously he must have gotten schizophrenia. Like we we didn't understand that there was a genetic illness. We knew that there was a risk of genetics, but because I didn't get schizophrenia, I assumed that I did inherit those genes, so I thought we were in the clear when we had kids.

SPEAKER_02 19:25

Of course, it's called normalizing, it's what all families do.

SPEAKER_03 19:29

Yeah, and you really, I mean, you think it's like rebellion. You don't really really you don't know what it is, you just know something's wrong, but teenagers go through things.

SPEAKER_04 19:37

So I illicit drugs involved, Michael, or did that wasn't part of your beginning? Drugs, yeah, like like marijuana.

SPEAKER_01 19:48

Yeah, I had started smoking marijuana, and that's kind of where it started for me. I still had the the pre-drama symptoms without the marijuana, but when I started smoking, that's when it all really really started for me.

SPEAKER_03 20:01

Yeah, he started smoking marijuana right after high school, so he was experiencing all of the pro-drama stuff, and he was also kind of experiencing bipolar symptoms his senior year, you know, um like cycling and bipolar would get really tired and then have a lot of energy and kind of making irrational choices. But the delusional stuff and the psychosis didn't start until after he started smoking marijuana, which it you know, it probably would have happened anyway, because it the the illness was developing, but the marijuana and made it so much worse.

SPEAKER_02 20:38

Yeah, and we we have discussed that many times in in episodes, and we'll devote a whole show to that at some point. So I'm sure there's a lot more you could tell me, and I would imagine the middle part of this story is trying various medications and they didn't work and they didn't, and then suddenly you there was a turning point when you discovered closerol. Is there is it too much of a jump to go to there? Because that's gonna lead us into the documentary.

SPEAKER_03 21:07

No, I can I can I can do like a little summary. So, yes, once we realized it was schizophrenia, um, over the course of a few years, he had hospitalizations, a suicide attempt, he had 13 different antipsychotics, lots of mood stabilizers, and nothing really seemed to help. He just got worse and worse and worse. So not only did his psychosis increase, but his cognitive function was had declined so much that like he couldn't read anymore, his vocabulary had diminished, like he he wasn't sure what certain words meant anymore. Um like he really was I mean, he just was not able to take care of himself at all. And not only that, he was not in reality. And it was a really scary time. Um to know like we were taking turns, like my husband and I, and then he has a brother and a sister. We were all all taking turns making sure that he was never left alone because like he would forget what day it was, what year it was. Um he would just he would have moments where he was he completely had no clue what was going on. And if it was the middle of a winter, we were worried that he might wander outside and freeze to death or take off across the country. And you know, we just we were really just trying to keep him alive. We got to the point where like we were just trying to keep him alive, and that consumed every moment of every single day. There was no, yeah, nothing else happening in in this house but trying to.

SPEAKER_02 22:44

I I think we get that, you know, as we each have other children ourselves as well, it affects the whole family. Michael, you're very quiet right now. Do you want to share a little bit of what you remember about this period?

SPEAKER_01 22:58

Um I remember having a lot of like delusions, um, thinking that my family was like against me. You know, they're trying to control me and what I was doing.

SPEAKER_03 23:11

Um well, there were times that Michael would look at me and not even recognize me as his mother and ask where his mom was. He would think I was an alien, or you know, and my dad did that too. There was one point in um when Michael had he had overdosed, he'd taken all of his medication, he'd taken several weeks' worth of medication boxes, and he was an ICU, and I was sitting there in the ICU room, and I looked out the window, and I remembered that it was just a few years before that that I was sitting in that ICU room with my father, and that he looked at me and he said, Can you please tell my daughter Angela that I'm here? I don't want to be alone. And he couldn't even recognize me. And here I was in the same exact space with my son, experiencing the same thing. Um, so you know, there and I could I I wouldn't really we could talk for hours and hours about you know what we've gone through and what I experienced as as a kid or with my dad, or but the main thing was that like after we got to such a low point where none of us had a quality of life, especially not Michael. But you know, our quality of life was every single day we just have to try to keep our son alive from hurting himself or hurting someone else because he doesn't understand what's going on, and he was just in torment. That I realized I have got to find some recovery stories. There have there has got to be people out there that get better from this, and so that was like a turning point for me. I started searching for um stories from people that had gone and had a decent quality of life. And the first one that I found was Bethany Iser. Uh, you know, the the founder of the city of the city. And so then later, so that started my clozapine advocacy because she was taking clozapine, and I found a lot of recovery stories, and really all of the people that were truly living a good recovery, I don't know about recovery life, they might still have symptoms, but they were able to live a meaningful life. And by meaningful life, I mean they're contributing to society, they're happy, they're pursuing goals and dreams.

SPEAKER_02 25:28

Um I mean, and and as we've spoken before, there's there's levels of recovery. Not everybody gets to a master's degree. My son right now is calling he still has dreams, so maybe he'll get there, but he's calling it rebuilding. That's what he's calling it.

SPEAKER_03 25:43

Yeah, exactly. I think it's like being able to live life and not be down in your room hiding under the blankets because you think that you know something's going to get you. Um, you know, Michael still has symptoms, but he's able to still enjoy his life, pursue goals, dreams, and and look forward to the future. But so everyone shared clazapine, and that's when I restarted our clausepine journey. Michael finally got started on clozapine, and he, you know, from the very first day on the lowest dose, he started to get better. He wasn't recovered. You know, it wasn't like it was an overnight thing, but he started getting better. And about a year into clauzapine, we found Dr. Leiteman's book, um, Meaningful Recovery from Schizophrenia and Serious Mental Illness with Clozapine. And that was kind of whenever um we made connections with the Leitmans and we became began to um travel to New York to visit, and we became part of Team Daniel. And it wasn't too long after that that it's probably about a year after that or a year and a half, I started the Facebook group. Um Team Daniel.

SPEAKER_04 26:47

So you started that Facebook group?

unknown 26:49

Yes.

SPEAKER_04 26:49

You started it. Wow, because I that is so incredible. I have sent so many people to that. You know, all the other groups are gloom and doom, and nobody seems to have answers. And that Facebook group just brings people to hope and advocacy, you know, instead of feeling desperate. So thank you. I didn't realize that you had done that.

SPEAKER_02 27:12

That is incredible. And just so you know, if you're listening, this will be in the show notes. But the Facebook group is Team Daniel Running for Recovery, because Dr. Layton's son Daniel has schizophrenia, and a lot of his treatment is through running, and Daniel runs and also is a comedian. There's also a website, Team Daniel Runningfor Recovery.org. So uh, and while we're here on the links, let's go to the documentary, which is if you want more of this story and more of stories like this, and how closapine or closerl, depending on how you're you're framing it, properly administered can have such a good effect. The documentary is the website for the documentary is Into the Light Meaningful Recovery.com. So why don't you tell us about the documentary, what it's about, and and I'd love to know what the reaction was at NAMICON and elsewhere so far.

SPEAKER_04 28:12

And before we go to our guests, Mimi, I wonder if Mimi could give us like a thumbnail sketch of what she did because um that is like you've been working on it for it seems like a couple of years, and I'm not quite clear what you did, Mimi.

SPEAKER_00 28:28

Hasn't it, Angela? Almost three.

SPEAKER_03 28:30

Yeah, we started, so we officially started taking notes during the Zoom meetings in May of 2021. Uh, our very first, I mean, of course, the parents had played around with the idea of making a documentary for quite a while, but then maybe January or February, we had our very first Zoom with a group of parents that talked about it. Um, and then a couple months later, uh, I contacted Mark Durand and Karen Bresslin and Mimi, and a small core group of us started actually working on it and trying to make trying to make things happen.

SPEAKER_00 29:06

So our Mimi was in the core group. Yay! Thank you for your question, Mindy. I was um a producer, an associate producer also, and um I'm so proud of this piece of work, and I have so much hope for it. And I wanted to say something about Michael, okay. Michael just spent, I spent a few days with them in Denver, and you know, um, we talk about meaningful recovery and about having a life and and contributing and have doing meaningful things in your life. And you know, Michael's sitting here, and if you watch the film, you'll see how very sick he was. And now he, you know, there's a lot of people who get better and then don't want to have anything to do with it because of the attitude of society and and judgment and all of that. And I really, first of all, giving back to society, this guy is so much fun to be around. You know, he's sitting here, he's kind of quiet now, but he's fun and he is smart, and he is an upbeat person, and he's outgoing. And I mean, it's like you look at him and you think of how he was before, and it's like this is meaningful recovery. But just so encouraged and and um impressed in his forthrightness because it's really easy to turn away from it and not want to be associated with it. And he's out there, you know, we may be in the trenches, but he's out there on the firing line, you know, and he's changing it for other people by being as open and as uh um uh clear about this as he is, and it is really appreciated.

SPEAKER_01 30:54

I I really appreciate that, Amy. Thank you.

SPEAKER_02 30:57

So tell us a bit about what you hoped to accomplish with this documentary. And I know, like I even was interviewed for this, but I guess this my son is not willing to use Clause Rail right now because it was improperly administered when he did it, and he felt like a zombie all the time. So right now he's not in the Latman camp, but um, you know, I'm not in the film, but Mimi is, and Angela and Michael are. So we uh but tell us what you hold. Nick is too. Nick's in there too. Oh, and Nick's in there too. So tell us what you hold.

SPEAKER_04 31:28

I love the part with Nick in there with his painting, and the very end of the program is Nick, and he's beaming and smiling and waving from his paint easel. That was just an incredible part to see him looking so happy and healthy.

SPEAKER_00 31:44

Well, honestly, I never thought I'd see the day. Back to closet paint.

SPEAKER_02 31:49

So, what did you want the documentary to accomplish and how's it doing? I eve anyone can answer.

SPEAKER_03 31:57

I think our main goal was to give families that were struggling with you know serious mental illness real help and hope. We just we want to share that there are effective treatment options, they're not used as often as they should be, but when they are used and they're and they're used correctly, there there really is a high rate of response to them. So I think that it's it's our obligation as a society to make sure that the serious mental illness community has the opportunity to take the best medications for their illnesses. And so that was the purpose of the film, to educate people, to let them know that there are medications that statistically are proven. This is not just opinion, they are statistically proven to be far more effective than the medications that are more commonly prescribed. And it is um, you know, doctors need to uphold the standard of care set by the American Psychiatric Association and by the FDA, and they need to prescribe these medications. So why's the whole purpose?

SPEAKER_02 33:10

Why don't they? What are the barriers? And I know I've seen the film, I I love the film, and uh you'll tell us later how other people can see it. So why what are the barriers that the that the documentary addresses? Why aren't they prescribing this?

SPEAKER_03 33:25

Well, I think honestly, I think the main barrier is that the way clozapine is being prescribed in the United States, um, there are a few other countries that are also requiring lab work, but like in the United States, there there is monitoring involved with clozapine uh prescriptions. The patients are required to go to the lab, they monitor their white blood cells, they're looking for agranulocytosis, which is a which is a critically low white blood cell count.

SPEAKER_02 33:52

Um it's less than 1% of people. I mean, that's a very small percentage that that are in danger of that.

SPEAKER_03 33:59

So yes, there's less than like even on Zyprexa. It doesn't make sense.

SPEAKER_02 34:04

Um CDM, your mom's episode for that.

SPEAKER_04 34:08

It's a lot they also diagnose it incorrectly because my son was diagnosed with it, and then he was barred from taking clozapine for 16 years. And um finally he got to go back on it again after yet another suicide attempt. So I would say if anybody does have any listeners has anybody diagnosed with agranulocytosis, make sure you get a lot more tests, not just one, before they pull you off of it and bar you from taking it.

SPEAKER_03 34:41

Yeah. But I mean, I think the biggest barrier is education. Um, you know, physicians need to be educated. They need to learn more about clozepine. They need to go to the um, they need to go to the APA guidelines for and look at them. They need to go to the clozpine patient insert and read it because a lot of the a lot of the ways that they're prescribing it is not even how it's supposed to be done. For example, the APA says there's no upper limit to dosage or serum level. There's no set upper limit. But yet, for some reason, the labs flag levels that go over 600. So then the doctor has to get a phone call from the lab in the middle of the night to that, and it's it's not even an accurate measurement based on what the APA says. So there's there's a lot of misinformation out there that which creates a lot more work for physicians.

SPEAKER_04 35:37

And it creates that it's the same similar across the country, or is it spotty according to state with less education in substates and more in others, or is it the same all over the country?

SPEAKER_03 35:50

I think it's pretty standard across the US. There's not enough education. I mean, I think that education about antipsychotics in general is there's not enough coverage of it. Like I'm in nursing school right now. And for example, I my pharmacology class, I'd have pharmacology one day a week, but I have two days of cultural awareness sensitivity. I think that's extremely important information and it needs to be out there. But I think the nurses need to know about the medication that they're administering to their patients.

SPEAKER_00 36:25

So I think that closopine got off to a bad start. Um there were a couple studies very early on in the 60s that had some very bad results, and I'm not gonna quote them because I'm don't have all the statistics right at my fingertips. But and then, you know, it got this warning, and then there's the thing about a granulocytosis. And if you consider what it takes to just get a person with schizophrenia medication compliant, and then on top of that, for the first few months at least, they have to have weekly blood work. You know, it it's almost impossible. I know Nick's first year of closapine was a full-time job for me. I mean, that was all I did was manage Nick's closapine, and fine, I'll do it. But most doctors don't want to take that on, especially psychiatrists who are gonna have a patient they can uh administer or prescribe some other antipsychotic, and they see them once a month for 15 minutes and write the prescription and they're gone. And this is something that requires a more holistic approach, at least Dr. Leitman's uh protocol does, a more holistic, a more overall wraparound approach, and it has results that are so far and beyond what we're seeing in the other ones. So we need to educate also the moms and the other and the consumers that we need to demand this. They don't get to not give it to us.

SPEAKER_03 38:02

Well, and you know, the thing, I think another misinformation out there is that clauzapene has so many side effects, but the other medications don't. And that's just okay. That's just we, you know, there there are these Dr. Leitman and Dr. Mandel. For those who are listening that don't know who they are, they're a married couple. They are both internal medicine doctors who had a son that was diagnosed with schizophrenia at 15. And over time, they eventually took over his psychiatric care and started prescribing the medications for him. But what they're doing differently than a lot of psychiatrists is that they're actually managing the side effects that the antipsychotics cause. Those other antipsychotics cause side effects too, but unfortunately, psychiatrists don't, they ignore them. They let their patients, they just don't address the side effects. So the difference with clozepine and the meaningful recovery protocol is that we are addressing the side effects of the medications. We're addressing the body systemically. We're not just giving one magic pill and expecting it to take care of everything when this is a brain illness that affects all the different regions of the brain.

SPEAKER_04 39:07

So that's well said. And this is such an important message. So I understand that uh NAMI um did not select this for viewing at the convention, but I'm delighted you were at the convention. And then did you have other viewings in the area? And how did that go as far as people getting to attend them?

SPEAKER_02 39:28

Yeah, why are you saying NAMI didn't accept it?

SPEAKER_03 39:32

Well, uh, first of all, the the um the version we gave them wasn't complete because we had to have it submitted you know a few months before we were even done with the film. So I'm not really sure. I think maybe, you know, there are a lot of pharmaceutical companies that support NAMI. And maybe to show this film that is primarily about clozepine may have been um, you know, they felt like that was just not appropriate. Okay. Like they were showing favoritism over one drug compared to the other drugs. So I I don't really know their reasoning, but I do know that Ken Deckworth, um, who is the NAMI national medical director, he was a he is in our film. And he um, you know, we interviewed him and he does support the use of clozepine. And I want to, I do, I want to make a point that it's not that clozepine is a miracle drug and that clozepine is the only way. You know, if if someday another medication is created that works as well as clozapine, then we're gonna be advocating for that also. But to this point, unfortunately, there has never even been one other clinical trial or study that has ever, or clozapine has has been outperformed. In fact, it outperforms all the other medications so much that they don't even try, they don't even try all the other medications against clozapine.

unknown 40:55

Right.

SPEAKER_04 40:55

Like hard access coming out uh in the pipeline didn't get compared to clazepine.

SPEAKER_03 41:00

Right. So we don't know. We're hoping maybe that it'll be a great medication too. It sounds good, we're looking forward to finding out about it. Um, it's not like you know, we are clozapine fanatics because uh it's clozepine. It's just we think that the best treatments should be tried earlier on and they should be prescribed correctly. Um, you know, we talk about lithium, we talk about several other medications in the film too. Right.

SPEAKER_00 41:23

And the thing is that clozepine is regarded as the drug of last resort. And you have to, in order for them to even try you, you have to have what two, two to three other psycho antipsychotics have tried them and have them be non-effective.

SPEAKER_03 41:40

So if you're if you're if they actually held that standard up, that would be great, but they don't look at Michael, he took 13 other MS.

SPEAKER_00 41:49

Well, I can't like I also Nick we were 15 years into this before anybody even mentioned closet. And I was hardly under a rock for those 15 years, and it wasn't until I met and became friends with Ellen Sachs that it was mentioned to me, and then it was mentioned to me two or three more times, and finally we found Dr. Leitman and we did it. And I look at somebody like Michael and some of these other kids, and I think, what would Nick's life have been if we had been able to get him on clause 15 years earlier? You know, he'll never get those years back, and not only not get the years back, but damage done to his brain. I think it is obscene that we are not trying this and using this on younger kids because it steals their life.

SPEAKER_03 42:41

Think of all the money that would be lost to the big pharmaceutical companies if the most effective medication was used sooner. They wouldn't have the cheapest, most effective medication.

SPEAKER_02 42:52

Exactly. So this documentary addresses a lot of these issues, and I want to encourage people to see it and to uh be open to it. So I'm curious about two things, and you know, so we know we have about another five minutes left, five to ten minutes top. So uh there's so much to say, but I also want to know, people will also want to know where and how they can see it and what you hope the documentary will do. But I do want to ask um about the narrators, about Brooke Adams and Tony Shaloub. And I know they're friends of yours, Mimi, but was there a personal reason they agreed to to narrate this wonderful documentary?

SPEAKER_00 43:36

Well, I would say the personal reason is they're friends of mine. But beyond that, they're very persuasive. Well, they they it I didn't even have to be. I mean, that was the that's who they are. They're people who are salt of the earth, care about people, care about the world, and do a lot of things to put their you know, action and their money where their mouth is. I could not be more admiring of a person about them. And also they lived around the corner from us. Our families are very enmeshed. Our my two younger daughters were best friends with their two daughters. And they watched this happen over a period of all these years. They watched, you know, the golden boy fall. And it broke all our hearts. And they watched what I went through. And they wanted to be part of this for those reasons. Because they love Nick and because they care about people.

SPEAKER_02 44:35

I think that's a fantastic reason. So where do you hope the document or I want to know what they people who are at NAMICON said they didn't get to see it, but they got to see what did they see? If they stopped by your booth, did they see a trailer? Did they see and what was the reaction from people that met you?

SPEAKER_03 44:52

Well, we had the video playing. So we had we had the video playing at the booth. Um, and I honestly we had a wonderful response. We I think popular booth. Yep. At our exhibit, we had the biggest crowd. Our people kept coming back. I think they could feel the love. Like we would have people stay. They would be hanging around for 30 or 40 minutes, they would leave, and I mean a couple hours later they're back. They're hanging out. Um didn't we, Mimi? We had we had regular, we had regulars coming back and just sort of, I think that you you can tell. Mimi and I talked about this in DC. Like when you you can tell when you find like-minded people, you find your tribe. Um, and I feel like people were able to see that we were we did this work out of love and out of, you know, we wanted to give other people hope and to give people a future, you know, that things can get better. So documentary, where does it go from here?

SPEAKER_02 45:54

Where what are your hopes? I mean, are you distributing it to festivals or is this just going straight to doctors or straight to nursing schools? Like, where what do you envision for this documentary and what can people do to support it?

SPEAKER_03 46:08

Well, we are hoping that people will share, share, share. So if you go to the to the website, you can either go to the Team Daniel Running for Recovery website, you can go to the Team Daniel and Clause Pine Facebook group and join, and you can get a link to it. And then the documentary itself has a has a website. It's called Into the Light Meaningfulrecovery.com, and you can also go to YouTube. So we've made it accessible in all these different locations. It's it's free to share. Um, we're hoping that people will share it with their providers and their clinicians and explain the reason why they would like them to watch it for educational purposes and to see that you know, with the right treatments and the right medications that people really can get better. We're hoping that nursing schools will show it. Um, we're just asking people to make sure that they share it with as many whoever and whomever they can. Sounds good.

SPEAKER_02 47:04

Mimi, you have something to add about this?

SPEAKER_00 47:06

Well, we just had uh Karen Breslin, who is the one of the biggest driving forces between this whole behind this whole thing. She and I were talking about it uh because now that's our job is to get it out there into the world. And I'll just say to our audience if there's anybody affiliated with a hospital, a medical school, grand rounds, anything where they would like to present this film and have one of us or Dr. Leitman zoom in, or if we're around, actually uh you know, participate. Uh reach out. Um, I guess reach out to me. I mean, you guys all have my contact information, just email me. There's that, and then there's local NAMI chapters. We want to get this disseminated through local NAMI chapters and the medical schools and different doctors, and we're gonna have we're working on a screening in New York and we're gonna have a screening in LA. But um, if anybody's interested, just reach out. We we're happy and ready to work with you.

SPEAKER_02 48:13

I would love to see this in Psych 101 classes. Yeah, I would love to see this in Masters of Social Work classes because many people go into therapy. And I, you know, when my book came out a decade ago, oh my gosh, uh, I was invited to sometimes speak, and I would sit through the whole class to see what the class was experiencing. And the films they were showing about schizophrenia were so hopeless and you know, awful. And yes, it's an awful illness, and we've all been there. And Michael, you've been there, and Angela, your whole family, you know, we've all been there, but they weren't showing much hope. And I think to share hope with hard work is an important message of the documentary. So, what people can do is share it, find opportunities to screen it. It's freely available to everyone. And uh the websites and the ways to reach um Mimi or Mindy or Me are on our show notes, and with the links, you can reach Dr. Lateman. And if you're wondering about Dr. Leitman, we have a couple of episodes about him. You can check that out, and I'll put that in the show notes. And although Dr. Leiteman isn't taking any more patients right now, my understanding, the website has resources where you can find a similar working doctor in your area. Do I have that right?

SPEAKER_03 49:33

Uh the website does not, but if you join the the Facebook group, we do have a member-provided um clinician list. So our members have provided their their contact information for their their doctors. And so it's actually quite large. There's a there's a lot of clinicians on there.

SPEAKER_02 49:50

Fantastic. And hopefully, with this documentary, more will add their names to those clinicians. Anything, anything anybody would like to add? Michael, do you have anything?

SPEAKER_01 50:03

Uh watch the video. It's good.

SPEAKER_04 50:08

What are you doing? You're an inspiration. You're an inspiration, Michael. It was a fantastic video. I, you know, you know, you talked, um, Angela, about looking for hope, you know, when Michael first got sick and finding Bethany and so forth. When Jim got sick, there wasn't even anything. All I could find was Dr. Fred Frees, who I served eventually on the NAMI national board with, who was a psychologist. He was married, he had children, and and he was like an incredible person. He was the only thing, the only person I could find for any hope at all. So we have come a long way, but your video will help us go farther.

SPEAKER_02 50:49

Anything else?

SPEAKER_01 50:50

anybody's a lot of there's a lot of hope out there, so don't give up.

SPEAKER_02 50:56

And on that note, I'll again say the websites, if you're like in your car listening and can't get to the show notes, you want to look to Into the Light Meaningfulrecovery.com, Team Daniel Runningfor Recovery.org, or the Facebook group, just if you put in Team Daniel, it'll pop up running for recovery. Join that group. There's a lot that goes on there and a lot of hope, which is what we need. Thanks so much for joining us. 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 us or to learn more about our books, please visit our websites at MiriamHyfenfeldman.com, MindyGryling.com, or RandyK.com.