Advocating for the Best Available SMI Care: guest, Rachel Streiff (Ep. 37)

Rachel Streiff: Mental Health Advocate, Mentor to SMI Caregivers, Data analyst for Team Daniel Running for Recovery from mental illness, (Dr. Robert Laitman’s organization),  chemical and biomedical engineer with a legacy six sigma black belt certification - Mother of our guest in episode 22, who is currently a full-time college student.

If you enjoyed her son's story in Episode 22,  hear his Mom's side of the advocacy and how she insisted on the best available care - a standard some practitioners do not follow. A very powerful hour.

Links:

rachel.streiff@yahoo.com

TeamDanielRunningForRecovery.org

Clozapine facebook page

Team Daniel facebook page

SZ 3 Moms Facebook page

Get on the mailing list:

rslaitman@aol.com

Dr. Laitman’s Book:

https://www.amazon.com/MEANINGFUL-RECOVERY-Schizophrenia-Serious-Clozapine/dp/172748424X

New finger-prick Point-of-service test

Who Are the 3 Moms?

Want us to cover a topic? Ask us a question? Facebook page @Schizophrenia3Moms

Randye Kaye -Broadcaster, Actress, Voice Talent, Speaker, and Author (“Ben Behind his Voices”, Happier Made Simple)

Miriam Feldman – Artist, Mom, Author “He Came in With It”

Mindy Greiling – member of the Minnesota House of Representatives for twenty years. Activist, Legislator, Author (“Fix What You Can“)

Transcript

Copy Transcript Copied

SPEAKER_02 0:01

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 Feltman, Mindy Gryling, and Randy Kaye. We're at episode 37. Yay! We're so excited. Thank you for joining us today. We are just thrilled to have what we're calling a fourth Mom in the Trenches episode. We have a few of these every so often. And this particular mom, I'm so excited that you're going to be here with us tonight. So if you're watching on YouTube, you can see Rachel. Rachel, just hang out one second while I just cover a few things. I am Randy. I'm here with Mimi and Mindy and Rachel tonight. And we are talking about advocating for the best available SMI care for our loved ones. You know, you guys, you listeners, you keep us going. So on our Facebook page, we have close to a thousand, 948. So get 52 of your friends to like our page. I don't know what happens if you hit a thousand, but we have a thousand interested followers on there. It's not just random bots and stuff following us. So we're very, very honored that on our Facebook page you're interacting with each other and with us, and we really appreciate you. We're close to 300 YouTube subscribers, and our downloads people are almost 26,000 and 5,000 in the past 30 days. So we are growing thanks to you. Keep sharing, keep subscribing. You keep us going. I do want to mention a couple of comments that came in. Last week's episode was um the book Difficult about mothering challenging adult children. And Mimi, you said she got a review in the New York Times today.

SPEAKER_04 1:51

Yeah.

SPEAKER_02 1:52

Awesome. So it's an important book. We had really good reactions to that episode. Nicole on Facebook talked about her self-care because we talked at the end of the episode. And of course, you can always go back and download that episode 36 if you missed it. And I love this comment from Nicole. My self-care comes in the middle of the night when everyone's asleep. I journal hand letter, crochet, research, advocate. Well, she never sleeps. Email doctors and watch a movie without a million questions. Ha ha. So that's self-care in the middle of the night from Nicole. Thank you. And from Jean on YouTube, her comment was just wonderful and important podcasts. So we appreciate you. And uh one of the top fans on our page, Corey, says, it feels like every episode addresses everything I'm thinking and feeling about my son's schizophrenia. So thank you. That's why we do it. And we're really glad you're here. Tonight's guest is uh Rachel Streif, and she's a mental health advocate. It's got a number of things to talk to us about, and of course, a story. Her son Carson, his episode, Rachel, is one of the most downloaded ones we have. He's got over 1100 downloads on his episode alone. Uh it's episode 22. We did it last year, and he shared his journey from his point of view, from the lows of schizoaffective disorder to currently being a full-time student at Arizona State University, getting degrees in math and computer systems engineering. His mom, Rachel, is here with us tonight. And boy, you work part-time as an industrial engineer. And most impressive to me right now, you have five children. Although Mimi's got four. So I guess you win, but that's still a lot. Still a lot. And you have three still living at home. You live in Arizona. You're the data analyst for Team Daniel, and refer to our episode with Dr. Lateman, the running from recovery from mental illness, his organization. You're a chemical and biomedical engineer with a legacy Six Sigma Black Belt Certification. So oh my God, I'm so excited to have you near have you here. So you met us through Mimi. So I'm gonna throw it to Mimi to kind of give a little more personal introduction.

SPEAKER_04 4:13

Okay, hi everybody, and hi Rachel. Thank you so much for being here. I met Rachel when I finally found my way to Dr. Layteman um almost uh two years ago, a year and a half ago. And um right away when I met her and started listening to her talk in the support meetings and all of that, I said, this is a woman after my own heart. She cuts to the chase. And um I she has so much information and so much opinion that I think will be really helpful for us. So um I think the first thing is to just tell us a little bit about yourself and your story with um your son and who we met, like um Brandy said, and we'll go from there.

SPEAKER_00 5:00

Hey guys, thank you. I'm so excited uh to be here. So I have some disclaimers uh before we get started. I'm not a doctor. I start talking like I'm a doctor, and I'm not. I know a lot. Of course, I am the data analyst for Dr. Robert Lateman, and he has the highest rate of meaningful recovery from schizophrenia of probably any practice that we've encountered. So I know what his kids are on. That's my next disclaimer. I refer to a lot of these young adults, adults living with schizophrenia as my kids. And I have a kid, right? And so, and I advocate for patience here in town where I live and all over, really. I take phone calls uh from all over. Uh, and I call them my kids. And I know that these are adults with adult lives and responsibilities. So I apologize for calling uh, you know, schizophrenia patients my kids. Uh and also I like to have a little bit of a sense of humor about things, and this is a very serious illness. And by no means am I minimizing the difficulty that our loved ones face, the hardships on families. It can get very difficult. And uh, you know, I'm not minimizing it, uh, but you know, on the and and I've seen the podcast, I've seen your show.

SPEAKER_04 6:36

Yeah, right. So they're used to me, so I think you're gonna be okay.

SPEAKER_00 6:39

I think we'll be okay. Um also I live in Arizona and it's 85 degrees and everything is blooming here. So my allergies are terrible. I might just start choking on thin air. I apologize if that happens in advance.

SPEAKER_03 6:52

I live in Minnesota and I'm not gonna feel sorry for you because it's I know.

SPEAKER_00 6:56

So we're enjoying the weather. We're a little scared for what's gonna happen in July, but and then lastly, I I am an advocate for clozepine, clozepine. We're still not sure how you say it, but there is a superior treatment for schizophrenia. There are other options, and there are there are kids doing well on other medications, but it's going to come out, obviously. I am the data analyst for Team Daniel, Dr. Robert Latman's organization. So I'm a little biased. So absolutely.

SPEAKER_02 7:30

And that's all I wanted to put out there. You know, um, we all have experience with clozapine. My son is currently not on it, and obviously, we are pro making this more available and uh not focusing so much on the negatives. Just want to make sure all our listeners know we are none of us are doctors and we cannot prescribe, and we are not going to say, oh, you must be on this medication. We're just sharing stories. And I think all of us have had that experience of this particular medication that is available and works for many people, unlike any other, seems to be the last one prescribed rather than the first. And it's not saying that nothing else works. My son currently feels he's doing much, much better on something else, but I believe that's because the clozepine wasn't properly administered. But I'm grateful that he is where he is. So we're not telling everybody, get off your meds and go on clozapine, but we do want to make available, right, Rachel, the information and just clear any misconceptions. And you can do that through your story and your data analysis. Absolutely. All right. Enough disclaimers. Let's go.

SPEAKER_00 8:49

Yeah, and Dr. Leitman's not here to defend himself. I'm gonna tell you some stuff that he wouldn't say. Everyone in his practice is on clozapine, so he does use it first and it should be used first, but it's not for everybody. And he has he has uh, you know, eight, seven percent of his uh patients are not currently on clozapine. So it does happen. All right, so gosh, how did this journey start?

SPEAKER_04 9:20

There, you know what I'd like you to do is give a little bit of your overview of the mental health system and how it worked or didn't work. Didn't work, yeah. And your some of your thoughts about that.

SPEAKER_00 9:34

So, of course, when my son first got sick, it was probably a year and a half before he finally got help. Mental illness was not on our family radar, there was no family history. Uh, Carson had never had a even a problem going up. We didn't have psychiatrists in our family. I mean, now I have several on speed dial. So this wasn't something that anyone thought really could happen. And what happened was in the state of Arizona when medical marijuana was uh came on the scene, there was this idea that it was a safe, natural, helpful thing for people. And what happened was every high school kid uh that had an older sibling uh got their hands on some medical marijuana from the local dispensaries. And, you know, Carson never drank alcohol, he never smoked a cigarette, he was an athlete, he was a gifted student, he had never had, I think, even a B in his life. He ended up uh graduating high school with a 4.5 GPA and 1540 on the SAT. I mean, he was just this uh really awesome kid, never made a bad choice, never was in trouble. I mean, there were no signs of of illness or any problem ever. Is he your oldest just to get in your oldest child? The person is the middle of five. Middle of five. Okay, go ahead. Yeah. So the it, you know, I think it probably happened on some of the sports teams, you know, the smart kids started smoking marijuana and the athletes started smoking marijuana to calm the nerves before a race, right? Or or I don't know, I mean, kids. And he had an unusual reaction the very first time. He had hallucinations, some body movements that were odd. And if you have never heard the term cannabis-induced psychosis, how would you know? I mean, it's not like he'd been using a bunch of drugs. How would you know that that was unusual? And, you know, in hindsight, if there had been some education about this problem, some knowledge, some awareness, he he might have realized that that was causing him a problem, that that wasn't normal, that there were risks to that. But uh, of course, you know, the the the kids kept using and the the the teammates kept using this uh marijuana. Of course, today all the teenagers have a wax pen in their backpack, and it's it's really turned into quite an epidemic, really. But within a wax pen in their backpack, a wax pen.

SPEAKER_02 12:33

You don't know what a wax pen is. My kids are older now. Yeah, and one of them is raising three preschoolers. I don't think she has time for marijuana, but anyway, I'm hoping.

SPEAKER_00 12:44

Well, it's a high potency form of marijuana, and it's available at the dispensaries. Okay, there is a uh, you know, it's not the marijuana that we all, you know, smoked 30 years ago that you may or may not get high, that was three percent THC. Today's marijuana products are very high potency. And what we know now is that, and this has always been true, that marijuana can trigger schizophrenia, but the there's uh apparently a threshold at which that can occur. And because of the high potency, that threshold is reached sooner. There was one study where the equivalent of about 50 joints worth of marijuana increased your risk of developing schizophrenia by as much as fivefold, right? So five times the increased risk at this threshold of 50 joints. Well, with today's products, that THC threshold is being reached within a few uses, possibly, because some of these things are very high potency, 80 or 90 percent. Well, within a few weeks of all these, you know, kids using this medical marijuana, Carson's brain just kind of changed and ultimately it it never went back. Um, and we didn't know this, and I didn't know this. No one knew this. So when you're watching Carson's amazing podcast, you guys, it's really a miracle. He is well into recovery, he knows what happened, but and he speaks with such insight.

SPEAKER_02 14:29

Oh, he it's unbelievable. Unbelievable. You know, there's a lot, and you're way at the beginning of the story, and it's only a 45-minute podcast. So we'll get to there. We're working on it. We need to, if you can, um I'll keep going.

SPEAKER_00 14:40

Yeah. But that insight is only because he is on clozapine now. He didn't know what was happening at the time. And a third of these marijuana-induced psychosis cases turn into schizophrenia. And as we know, mental illness is a spectrum. On one end, we have this uh, you know, situational anxiety depression. I think I had some of that this morning, right? And then, you know, it gets into some worse anxiety depression, and then you see uh personality disorders and um other things that become more and more serious, and then you hit a brick wall. And on the other side of this brick wall is psychotic spectrum disorders. These are not behavioral health problems, they don't even belong under the umbrella of behavioral health, right?

SPEAKER_02 15:32

Right, right. And that's something absolutely. And these are the thought disorders and the very severe.

SPEAKER_00 15:37

Yes, and so this was clear to me, this was not a behavioral problem.

SPEAKER_04 15:42

So, Rachel, let me interrupt you for a second. Yes, I want to hear so much from you. I want to keep you focused. So he's sick, he's really sick. Really sick. Can you tell us a little bit about what you encountered with the mental health system and how you got to where you are now?

SPEAKER_00 15:58

Yep. So he was probably sick for about a year and a half before we realized it and were able to do anything, and he didn't know he was sick. Sick looked like he was having psychosis. He was so it started out. It started out that he was withdrawn. He was in his room, his facial expression changed, he lost interest in activities. This happened very slowly over the course of a year and a half. We begged him to get help. We thought it was too many men in the house. We thought he was uh needed some independence, senioritis. And ultimately there started to be behavior problems and changes in behavior, thought disorder. He kept losing things, couldn't stay organized, couldn't take care of himself. We thought, here's a great idea, let's move him into college. That's just what he needs. That was a terrible idea, and ultimately we uh ended up figuring out the lights went off. A lot of people reached out to me to help. And he ended up being involuntarily committed in the state of Arizona through a petition. He refused medication. He did not see that he was ill. Typical anosignosia. I knew what that meant because I had been doing research, but uh, I've yet to find a healthcare provider in the field of mental health that knows what the hell anasognosia is, that's prepared to treat it. I remember finally got Carson into a hospital triage. Uh, and this this was you know, magician work to get him there. I I don't even know. And I had a letter that I gave to the triage nurse. I said, please don't say schizophrenia in big words when I handed it to her. And the first thing out of her mouth was, Oh, so you have schizophrenia, huh? Just left. Right. So complete lack of cooperation. And of course, he was 18 years old, and so we had the hip handcuffs and we would call. And of course, they don't even, we can't even tell you if he's in this hospital, right? So, in hindsight, now that I have like a PhD in patients and I know what I'm dealing with, maybe I could have gotten him help without having to do and very painful involuntary hospitalization. You know, in and I have to be proud of Arizona. We have good laws here. And Carson uh was evaluated, he went to mental health court. It was the worst day of our life, but the most important probably that Carson um we we ended up having to testify. I mean, I'm getting a little sick thinking about it. You know, had I known then what I know now, could it have been done another way? I don't know. But he got on court-ordered treatment, COT is what it's called in Arizona. And that was a court order for one year of assisted outpatient treatment. Uh, it's called AOT in other states in Arizona.

SPEAKER_02 19:13

And if you're listening um and you haven't had our other episodes, we do have episodes on AOT. So um, so you you can find out more about that. And anasygnosia is a symptom of those severe mental illnesses where you're not aware that you have the illness. And so, in case you haven't heard of it, we do have an episode with kind of the king of anasygnosia, which is Dr. Amador. So, more information is available. Um, Mindy, you had a question.

SPEAKER_03 19:44

Yeah. Um, so I wanted to explore a little more, Rachel. You were saying if that was the right thing to do or not, you know, to take your son to court to buy to get him into what Arizona calls COP. Never heard that one before. Um could you I'd like to explore that more with you because um that is something we did with our son too, a similar trajectory. And our son eventually came to say he thought we saved his life, and he is grateful, but he's at the time, he's been committed seven times. When Carson was on, I specifically asked him about that and um how he felt about his family. And his answer was, and I'm sure you watched it more than once, you know better than I what he said. But he said, um, we're getting there, or something like that. And I'm just wondering, um, you said you didn't know if that was the right thing to do, but um, do you really would you really want to want to have not done that and got him help so fast? Because I think that's one thing that's pretty well established that worked in Carson's favor that he got early help.

SPEAKER_00 20:58

Yeah, absolutely. Uh it was the right thing to do, it was a hard thing to do, and it is no doubt traumatizing when it happens. And Carson had the opportunity to do a lot of counseling once he got medicated properly, once he got into recovery. He had he had to go through trauma counseling to to deal with it after the fact. And forgiveness, it was hard. These are not easy decisions to make, they're not easy for the these kids to go through. It's very difficult. And he didn't know what was going on. He was so confused. And again, these conditions, uh, you know, they schizophrenia used to be called premature dementia. And and when it happened to grandma, it's really sad. When it happens to your 19 year old son, it's terrifying.

unknown 21:57

Yeah.

SPEAKER_00 21:58

So we're about halfway. through the podcast we'll leave it on so keep you keep going and we want to get um to more of the story and how it flipped around at some point i know you have more to say and uh we totally totally get it and you would by the end uh we'll get there share how the court ordered treatment carson was assigned and and the system worked for us it it worked how it was supposed to work and is it because uh Carson was young is it because we i was this really fierce advocate was it because i was very resourceful was it because he's white i mean do we have uh you know imbalance i know so many families that it doesn't work out but it worked out everything that could have happened right happened for us uh until we got to community mental health care Carson was assigned to a clinic I'm not gonna name names and I don't want to name people they care but the standard of care was terrible no experience with anasognosia I was treated like a pesky mom put on medications that weren't working they caused serious side effects that they didn't treat and he honestly came out not a whole lot better you know the go-to I call them standard issue psych meds right the go-to respiridone and then if that doesn't work zyprexa and if that doesn't work latuta and then if that doesn't work abilify they gave him whatever they could do to as quickly as possible give him an injection and send him on his way and the you know he was pacing around the house staring at a wall he's he he couldn't read more than a few pages of a book uh he was just not anything like the person he was before and all of the providers at this community mental health clinic thought he was doing great and I went to I love NAMI of course we went to our NAMI family to family class learned as much as I could learn and I was kind of got the message well grieve the loss of the kid you had and I I would that's where I was and I I I wisened up I realized okay I've got private insurance let's do something else I just wasn't ready to give up and we sent Carson to a place I it's a family run program called Viewpoint Dual Recovery in Prescott Arizona and today I am the team Daniel family liaison to that program and it's two hours wow and they have now today a closipine program called the Clozapine House and it is based on Carson's success with their program. So I was able to get that court order for treatment transferred to viewpoint up in Prescott I feel like I owe uh I'll never be able to pay back uh that program for what they gave to Carson.

SPEAKER_04 25:26

Uh Amy Fackerell is the owner she's like family they you know there's there's some people that I'm forever indebted to do to for the rest of my life of them that family on their waiting list to get in something what what do you think about uh you touched on it about this approach by the community health um uh providers and basically the whole mental health system that just mitigating the positive symptoms and sending them home to be a zombie is success and about the different drugs that they give and why they won't give closope well first of all it's all based on a giant lie and let me let me let me tell you how how shit works okay and I am I have these statistical certifications I have done research for products that are under FDA regulation.

SPEAKER_00 26:25

So when you go online and you Google or when someone you're a doctor and someone shows up from a a pharmacy company rep and they feed you a nice lunch and they tell you about their wonderful clinical trial data okay for this new drug that's come out. Here's how clinical trials work and from now on anyone watching this podcast when you read anything on the internet go look at the exclusion criteria because here is how new drugs are approved for treating our kids first of all in order to even participate in a clinical trial you have to be capable of consenting to the trial okay that's that's standard bioethics it's like that for a reason but that significantly limits the value of that information. So you're wiping out probably the 70% of the sickest population in schizophrenia because none of these kids that have the anasognosia are even capable of participating in a trial, right? The other thing oftentimes these are tested on people who are already stable on another medication and then they're going to transition them to the new one that's being tested and compared to a placebo. Well if you're already stable on a medication uh you're probably regular schizophrenia instead of treatment resistant schizophrenia which is a giant lie I don't even know what regular schizophrenia looks like that I think looks like your kid comes to you one day and says hey I'm hearing some voices and I don't think it's normal and I need medicine okay give me that and now I'm fine and I can work and go to school.

SPEAKER_02 28:15

I don't know that if that's no you're saying much of schizophrenia is treatment resistant. Is that what you're saying?

SPEAKER_00 28:21

The majority absolute majority is treatment resistant. And guess what if you're watching three moms in the trenches you know and you're in the trenches you don't have a kid with normal schizophrenia like why so you know that that's for sure.

SPEAKER_04 28:38

Right so I mean honestly I think that normal schizophrenia is what we're dealing with in this scenario you're describing it.

SPEAKER_00 28:47

Treatment resistant is a lie. It was invented for the sole purpose of new drugs coming to market not having to be compared to clozapine. If you dig into the exclusion criteria and sometimes you have to look uh it'll say history of treatment resistance is excluded from the study. That's code or if you've ever been on and it'll even sometimes say patients are not allowed in the the trial because if they have ever once taken clozapine so our drug manufacturers have created a system where new medications are only tested on this cherry picked group of kids patients that are most likely to respond. And so we get these trials that look wonderful and I'm not gonna bring out uh I don't want to name names I don't want to get in trouble, but uh you know big great fanfare got released a new medication last year and in the it was fast tracked by the FDA and it didn't even outperform a placebo in the phase three trials in this cherry picked group of non-treatment resistant patients right now why don't they want clauzapine out there?

SPEAKER_03 30:13

Because clauzapine costs $65 a month it's generic a typical injectable patented antipsychotic is two or three thousand dollars a month and your typical designer pill is fifteen hundred dollars a month it's about money and it's always about money I read always about money I read the Empire of Pain about the Purdue pharmacy SAC brothers it wasn't anything about uh clausepine it was opioids but that was all about money and so after I read that much more suspicious of of the companies I always was but now I'm even more so yep so so then what what are we to do?

SPEAKER_00 30:53

Tell us what happened and I know I mean I totally hear at viewpoint at viewpoint dual recovery Dr. Terry Vaughn in Prescott Arizona is the medical director of that program and they put Carson on clozapine and there wasn't very much change at first not all closopine regimens are created equal which I'll get to but about three months in because he just wasn't responding to anything okay they had tried all these things he was just I don't know really they they call it the last you know it's the gold stage the last one the last resort yeah right so three months into closipine Carson basically and it's a slow titration right he basically wakes up and reads an entire novel cover to cover in a day like his brain came back on he and this was he hadn't even been able to read more than nine pages of anything you know he school wasn't going to be an option nothing was going to be an option and it it's not just clozapine uh here's here's what Dr. Lehman doesn't tell you 11% of his patients he can't even get them to start the medication. And the reason is anasygnosia they unsuccessful getting an order for treatment unsuccessful getting the patient engaged there's there's a pretty high fallout right off the top and then like I said only 93% stay on it in his practice. He doesn't advertise that right there are some that it doesn't work for but Carson made a full complete recovery it took about six to nine months but a year later he was back in college uh he ended up one semester part-time and then he went full time and then he was so bored with just studying math he had to add your systems engineering to his major he is symptom free he is happy he is awesome he drives a car now and he's got his life and his livelihood back he's lost the weight uh by following what we're calling now the Leitman protocol and I felt like I was lied to that you know grieve the loss of your son he'll never get better than 70% and you know what consider yourself lucky because he can sit on a couch and stare and he's not hurting anybody like that was the attitude in community mental health. So getting a good doctor who has this high bar for recovery Dr. Vaughn was not going to just let this kid you know wither away and be disabled and she she got the best treatment for him. And what kills me is this is this is the standard of care. I hope we have time I'm gonna read for you page 66 of the APA guidelines for the treatment of schizophrenia. This is the 2021 current edition if a patient has had minimal or no response to two trials of antipsychotic medication of two to four weeks duration at an adequate dose a trial of clozapine is recommended. It's also recommended for a patient with persistent risk of suicide that hasn't responded to other treatments or risk of aggressive behavior. That is the standard of care and no one is using it.

SPEAKER_02 34:25

It even goes on hey a trial of clozepine may be appropriate in individuals who show a response to treatment i.e more than 20% reduction in symptoms yet still have significant symptoms or impairments in function and the idea yeah I you know it's it's there so this is really interesting the standard of care is right there in black and white followed and it's not being followed Mindy has a question and then if we can bring it to because none of our sons are where Carson is and you know we want to be honest about that. I don't think we're saying everyone's going to get a hundred percent there are other elements that go into it I'm happy with 70% of my son back because I've had 10% but and I didn't even have 70% of Carson back.

SPEAKER_03 35:14

Yeah so that's what my question is that's what my question is centered around is the recovery. So we have Carson on um we had a woman named Rebecca and we had a young man named Ryan and they're all doing wonderful Katie Katie Sanford also and Katie that's right um I was forgetting she had a mental illness she was doing so well so um so we've had huge success stories and we as of yet we're hoping to have our own sons on because they could be examples for to give people um hope but also you know we've heard from some families who have said you know our my daughter one woman said is not doing as well as the people you talk about or the people who are on it. So it just makes me sad or it makes me cry. And I was reading in um surviving schizophrenia which I'm sure we've all read about by Dr. E. Fuller Torre about recovery and he questions the whole concept of the recovery movement. I don't know if you recall section but he said because there are a quarter to a third of the people who fully recover and then they do really well, they lead regular lives and then there's the others who don't do as well sometimes it is the anasygnosia the ones you're talking about that Dr. Lincoln can't get on clozapine or sometimes people can't get them on anything if they're in a state that really doesn't have AOT or anything with any kind of a threshold. So um what do you say to people who have children who who aren't doing as well could you advise us on the balance between sharing success stories giving people hope and but then not making the people that don't have children who are doing that well or they themselves aren't doing that well lose all hope or feel like it's their fault. They must not be trying as hard as those others did. Could you comment on that? Because listeners that have asked for that information.

SPEAKER_00 37:17

Yep so I'll start by saying Carson was not doing well at one point and one summer I begged the universe if you heal my son I'll do whatever you want and it it's it's not easy and I don't know why my son got recovery and others haven't but I spend a fair amount of my time on my end of that contract that I made with the universe and as in addition to being uh a member of uh team Daniel organization and doing that work when Carson was in viewpoint he was there for a year I met a man named John with one leg he was living on he was living on some mattresses behind an abandoned building and his wheelchair was dilapidated and he was regularly getting kicked out of the local places for just being disruptive and I saw that he had a faded bracelet on his arm that looks like it came from a hospital and what I what I learned was that he had been court ordered to treatment but given a bus pass to nowhere. A case manager arrived to pick him up from the hospital didn't have a vehicle that could accommodate a wheelchair so he just left and this man went right back on the street and there is just terrible neglect of of patients with serious mental illness and people don't realize that a schizophrenia diagnosis is has a worse overall prognosis than many cancers if we wouldn't let a person with dementia just go back to the streets right we if schizophrenia was cancer we wouldn't wait and give the best treatment as a last resort until we start you know ex accepting anosygnosia and changing laws changing policies well we got we got john in sorry and we got him uh I took him into an urgent psychiatric care facility we got him back in on his meds we got him on an invega shot which was like a miracle and he came back around and he was able to reconnect with his family and what happened was by taking him to his clinic appointments I met a man named Josiah and he's a nurse practitioner here in Phoenix and he first of all thought I was crazy because I would show up with these random people off the street expecting care than they had been getting and that has since led to a partnership and I am now a family mentor for the for several patients in Josiah's practice and I come with them to their visits and I make sure that they are getting the treatment that and they're able to communicate and most of them are on clozapine not all of them but those of us that uh have kids in recovery I tell you what we have a real gift that we have to keep helping others there was uh there's a woman locally that reached out to me her son had been on court ordered treatment twice and they destroyed him the same clinic that was that my son was assigned to they didn't listen they kept challenging his uh his ideas about what kind of illness he had anytime someone told him no you're hallucinating you have schizophrenia it was just insulting to him they were correcting uh his his thought own thoughts on his own situation i mean it's just wrong so we've got this we got this young man in to see Josiah we don't say schizophrenia and to him he's got severe anxiety and diabetes and we're treating his severe anxiety and diabetes that's what patient centered care looks like you know maybe we're using clozapine and zyprexa off label for anxiety but it's working pretty well for that kid right well you know that's the thing is we have to get really creative because really creative you know uh like Jerry Clark said when she was on our show the um the moment that her son reached criteria for treatment was the moment he stepped off a roof of a holiday in to his desk and it's chilly yes it's the thing that we have to remember and what you're doing which is the paying it back is what we all need to be doing.

SPEAKER_03 42:34

And it's exactly yeah I wondered is when you um are an advocate you mentioned you were treated condescendingly at best by the doctor times as a mother when you come advocate I have friends who are social workers and they get treated so much better as a social worker than they are when they're with their own children as a mother how do you treat it as an advocate is that a step up from being a mother you know what I no it's like the same oh no you know I it just you know this having this illness in your family changes you I'll never walk by a homeless person the same again and true my son has uh you know a mean mom right to advocate for many people don't and I go in there just like a a mom and I it and you know I help communicate and make sure the information there's a a girl here in town that I go dose out her meds and I I run up and check on her and watch her make sure she takes her meds.

SPEAKER_00 43:36

Wow there's you come to every state and help everybody well and so to that point like Santa okay so you know this these this handful of I don't hands up but the this these this handful of patients are getting good advocacy I call myself a uh family mentor for these patients I'm doing this volunteer what I'm doing Doing should be a paid position. And Josiah, his name's Josiah Nuakwa, he's from Nigeria. He is has been able to do prior authorizations for more frequent visits for added support for these kids that are on clozepine that need to be seen weekly. The community care, you couldn't even get in more than once every five weeks. And if everybody showed up for their court-ordered visit, there'd be a line around the building. You know, it's it's doing should be a paid position and all start the training program and teach teach people how to do it, and every clinic should have one.

SPEAKER_03 44:41

That is called case managers, and they usually have time to see their clients once a month or so. Right.

SPEAKER_02 44:48

If that and those those are fabulous ideas, and we did have Lynn Nanos on and several people earlier in the podcast talking about the system. And because we only have about five minutes left, I want to make sure that the um people listening who have loved ones with schizophrenia, I'm hearing two things. One is there's the system needs to be changed, and there are things that we would love to do to change the system. One of them, having family mentors for caregivers would be great. Um exposing the myths behind the non-use of clozepine. You know, all of these are great ideas. And I am curious as to how much a place like Viewpoint would cost and what the waiting list is, because not everybody. But the last question I'm gonna ask in the last four minutes, if you could, what would you say, other than let's fix the system, which is wonderful and we should do that. But also, what are you gonna say to the people listening who are going, what can I do today for my loved one? I would love to end that with that. But tell us what a place like Viewpoint would cost the average family.

SPEAKER_00 45:59

So self-pay viewpoint is around $20,000 a month. And that is probably about a third the cost of comparable programs. We were very fortunate. My son's private insurance that was through my employer paid for him to be there for an entire year. Wow. Viewpoint, right? So some insurance plans are paying. Also, viewpoint is has applied and they're starting to get some approvals back for Arizona State Medicaid plans. So it's coming. They are trying, they do want to open up some beds and they do want to expand. We are also working on expanding the program into my town. And I'm sure I'll be a part of that project. I say my family. So, number one, a psych the field of psychiatry has earned their reputation as really not being doctors. They've just earned it. Okay. Uh, you know, if I was an oncologist and said I'll only treat stage one cancers, that's what the psychiatrists are the equivalent of doing. So we have to find good psychiatry. It might be your internist, it might be your GP. Uh, my suggestion is I have given away these books on the best way to treat schizophrenia. And the earlier that it's talked about, the earlier that it's introduced. Okay.

SPEAKER_02 47:28

So can you share is if if somebody's not watching, share the titles of those books and I'll put them in the show notes.

SPEAKER_00 47:34

Yeah, the clozepine handbook written by Dr. Meyer. I just interviewed him for a documentary that we're doing for Teen Daniel. Incredible book. Go ahead and order it so that you at least can talk the language. And this is Dr. Robert Latman's book, Meaningful Recovery from Schizophrenia and Serious Mental Illness with Clozepine, Hope and Help. I've given these out to probably 15 doctors in my area. And the more we just show the best standards of care, the other thing, as soon as they say, well, that's a last resort, it's dangerous, say, Well, that might be how you practice here, but that's not the standard of care. So I like it. Say it. If a doctor was really following best practices on their first visit, they would say, Well, the best treatment for this is clozapine. Uh, it's a little complicated. There's a blood test that you have to get every week. But the good news is there's a finger prick now, so it's not a big deal. We're gonna try a couple other things and see if a less complicated medication will work, but please be prepared that clozapine is gonna be your best option. The other thing we have to challenge doctors to do is to be real doctors. There is an epidemic of not treating side effects. Half of Dr. Leitman's patients are have gained 100 pounds. They have still tremors before Dr.

SPEAKER_02 49:03

Leitman.

SPEAKER_00 49:04

Before Dr. Leitman, they're already on clozapine, but doctors aren't doing it right. So the thing to do is call and ask, do you guys do the Leitman protocol here? And here's the thing maybe clozapine is not going to be for your kid eventually, right? Like that might not be the best medicine. But if your psychiatrist doesn't even prescribe the best treatment available, they and they and they're saying, Oh, we're not certified for that. That's like that is like an NFL quarterback that will refuse to throw passes. That's just someone great analogy. Right. That is someone that is not current in their field and clearly not following their the best practices. So we have to challenge and even lawsuits. If your kid was suffering for, you know, decades and never even mentioned clozapine, that's medical negligence. And I just interviewed Dr. Meyer about this. He says the same thing. Until we start holding a field accountable for, you know, you know, not settling for non-recovery. Okay. So there is better options. There are better psychiatrists out there, and it is a matter of holding these doctors accountable and finding and finding those good doctors for and you know, something you said that's very important is utilizing your GP if you have to.

SPEAKER_04 50:30

You know, finally when I found my way to Dr. Leitman, I'm on the West Coast, he's on the East Coast. It was very complicated. COVID had just happened, and there's no, we didn't have a decent psychiatrist. And psychiatrists, like Rachel said, they don't want to look at this as a medical condition. And um, and so I I conscripted Nick's general practitioner to work in conjunction with Dr. Leitman so he could order all the tests and the blood work and all that. And yeah, it was a full-time work uh job for me for a year running back and forth, but it happened.

SPEAKER_00 51:04

We got to get creative, too. And even Zyprexa, even Respiridone, all the medications have side effects. Don't let your kid have a bad experience with them because the doctors didn't treat the side effects. So educate yourself.

SPEAKER_02 51:22

Educate, yeah. In everything you read on podcast, um any there's books to read. NAMI has a great course, family to family. I'm actually going to start teaching one in in April. It's been a while, so I'm always excited to come back and teach that. It's often given virtually and often, and you know, we're very parental here, but we are, you know, this could be your spouse, this could be your parent, this could be your your sister or your brother. If you're in a position to advocate, then advocate for the best care possible. And that might include the best available care. You may need to know more than the doctor, and you may need to educate the doctors. I mean, I know that there are several times my son would have been discharged from the hospital with a bus pass. And I some said, and you are not doing that. That is you are not doing that. So we are advocating, and it is a lot of work, and it can be helpful to get an ally on your side. And if you're lucky enough to be successful, spread the wealth by helping others. Anything, any final word you want to add? That's what I sum up from what we said. And this has been fascinating. Thank you. Anything? Did it pretty much cover it? Sum it up.

SPEAKER_00 52:43

I think so. And I'll just say, you know, I take calls uh from families. You can reach out to me. You've got my name, you can find me on Facebook, send me a DM. And if you're struggling to get the right kind of care for your loved one, call me and we'll brainstorm. And there are kids doing well today because we had a pow-wow and a talk and a strategy on what do we do next. That's amazing.

SPEAKER_03 53:09

Could you tell the viewers about the Team Daniel Facebook? Because I'm I think all of us are on three or four of these things, and all of them are all of them um offer some hope, but to me, the Team Daniel one is the graduate because people are asking such sophisticated questions and Team Daniel and the Clozepine community is the Facebook page.

SPEAKER_00 53:38

And I will tell you, Carson is alive and well today because of information I got from a Facebook group, not from anything I got from any doctor. Now think about that. So get on Facebook, find our groups. The information sharing is phenomenal. And your doctor doesn't know everything. You know, I've it if I had accepted the first and even second opinions, we wouldn't be here today.

SPEAKER_02 54:06

Wow. So it's Rachel Strife S-T-R-E-I-F-F. And there are many Facebook groups that are helpful. This particular one, the Team Daniel one. Just go on Facebook and search. You found us, you can find Rachel. And I just want to thank you so much for everything you shared today. Give our love to Carson. Of course. Yes. Awesome. And um, thank you. I think next week we're being interviewed by someone in the UK who wants to talk about having siblings with mental illness. So that she wants to learn from us. So that should be interesting. And Rachel, we're just delighted. Thank you so much for joining us. Thank you. Happy to be here. 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.