Angry Moms go to Washington: guest, Sue Maida (ep. 67)

First, updates:

Dr. Jeff Lieberman book event, Malady of the Mind  ( episode 68 June 13)(and can we talk about teeth?)

Mindy: NAMI convention- update, , Joel Corcoran, CEO of Clubhouse International. 

Mimi: Angry Moms, and introduce GUEST Sue Maida!

Links:

https://www.webmd.com/schizophrenia/features/schizophrenia-fda-hindering-clozapine?fbclid=IwAR2__DmXdnmuHqOqgc-myG4szJOfMfMyZt62uxeRHXyHKkmygQakkggw2X8

Team Daniel (facebook):

https://www.facebook.com/groups/www.teamdanielrunningforrecover.org?locale=ms_MY

Angry moms testimonials:

https://drive.google.com/drive/folders/1px4dkTi_ncNM7hxCj6ODJDDo1CZW1nlm

 Schizophrenia & Psychosis Action Alliance: https://sczaction.org

https://www.facebook.com/sczaction/?locale=ms_MY

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

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

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

Hosts:

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

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

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

Transcript

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SPEAKER_03 0:00

If we somehow miraculously find out what is wrong with our child, which is not easy, and then we finally somehow find a miracle of some sort of hope that there's something to do to help them after hearing so many horror stories of how it's over. And then if we somehow find a doctor that will prescribe clozapine, even if we get that far, then we have to do this blood testing. But somehow we get past that. Our kids get better. It's a miracle they come back to life. And then because of a computer glitch or a miscommunication, our children can't get his medicine.

SPEAKER_02 0:47

That's Sumeida, our guest tonight, one of the Angry Moms. Mimi is one of the angry moms, and we'll find out what happened when they went to Washington to open eyes about schizophrenia and the challenges our loved ones face on this episode of Schizophrenia Three Moms in the Trenches. Welcome to our podcast, Schizophrenia. Three Moms in the Trenches. From the place where schizophrenia and real life collide. With Miriam Feltman, Mindy Gryling, and Randy Kay. Finally, a place to talk about the truth. This is episode 67, and we planned this as a Just Us podcast, Just Us Three Moms. But as we discussed it, then the title of this is Angry Moms Go to Washington, like Mr. Smith Goes to Washington. And as we discussed it, we decided we needed a fourth mom. So it's a just us episode with four moms tonight. But before we bring in Sue Maida, and forgive me if my voice sounds a little scratchy, I'm dealing with something here, but um I want to just talk about where we've been. The last thing we'll talk about is where Mimi has been to Washington. But um I would like to mention, and hello guys. Hi, nice to see you. Uh, you know, Mindy has been to the NAMI convention and Mimi has been to Washington. And I had the privilege of attending an amazing book event. Next week, we are bringing onto the podcast um Jeff Lieberman, who has written a book called Malady of the Mind. And he will talk about why schizophrenia is not getting the attention it deserves. He will talk about the history of schizophrenia, the history of treatment of schizophrenia. And I was able to take the train into New York and attend a book event of Dr. Lieberman, and it was truly, it was so New York. It was Upper East Side and an art gallery where they sell maps. It was crazy. But Glenn Close was there, uh Sylvia Naser, who is uh beautiful mind, uh the fame of that. So a panel of five people, a truly amazing event. And I was able to hear all of them speak and see the interest in the room around Dr. Lieberman's book. So I was truly delighted to be there and be a little part of it and wait till you hear him on our podcast. It's going to be an amazing podcast. So that was really nice to be in that world for a while. And I just before we go on about Nami, can we talk about teeth for a minute? Um, you know, we've already talked about this on this podcast, but you know, if if you're just listening, we are three moms. Soon to be four, you'll hear in a minute. With children, with schizophrenia, which is kind of the last mental illness in the closet that a lot of people aren't talking about enough. We've written books and we we do this podcast. And we tell it like it is. And I took my son, I know Mimi, you and I have spoken about this, but I took my son to the dentist this week. And ever since he's been on his current medication, which is Haldol, his teeth are just are awful. They're awful. And I finally got him to go to the dentist. And I j, you know, that one of the side effects of medications, and I don't know which one or why. Some say it's dry mouth, some say it's an excess of saliva, but his teeth are like rotting in his mouth. The the uh embarrassment he feels when he wants to smile. I can see it in his face. Have you guys ever uh dealt with that? I mean, we're talking about maybe they should all be pulled, like it's so terrifying. He's 41 years old, and you know, teeth are important and not covered by Medicare. So it's just, you know, I'm hoping that he will make the decision for a partial denture because I think he will feel or a bridge or something. He'll feel happier if he looks more like he did when he was a handsome teenager. But Mimi, I know you put a ton of money into Nick's teeth.

SPEAKER_01 5:13

Teeth has been, and you know, I it's funny, we should do a whole episode on teeth. It it's been a running thing, and it's also something that I found as I talked to other mothers that everybody can relate to. With Nick, the whole problem was I don't think so much of the medication, but he just completely stopped taking any maintenance for his teeth at all. There's that too. They think they're above it. Yeah, and I was fighting so many battles. It was just like, okay, whatever, I'll you know, I'll deal with his teeth later. Well, it came home to roost. And twice now we've done that big and again, all out of pocket thing of trying to save the teeth. And the last time, too, they told me about a year and a half ago, they said, you know, honestly, we think you should just pull them all out and get him dentures. And it was the amount of money that it was going to cost was horrifying. But the same thing, he was 35 years old, and I thought to myself, you know, I just it is it's enough to deal with, I can't do that to him. And I actually went back to work and uh did work for a year and a half to get the money to do it, and we fixed them, but um it's it's a nightmare and it's a big component of this disease. And I don't even know what's gonna happen now in the future, right?

SPEAKER_05 6:32

Because we have had the same problem, and Jim also has bad teeth, and every time he goes, he seems to have a cavity or two or three. So certainly dry mouth contributes. I don't know which meds either, but I do know the meds are hard on the teeth. And so um, Jim has had extensive dental work. I also have to say the mental health system, just like us, prioritizes everything else besides teeth. You know, there's the certified community behavioral health clinics that are a big thing nationally. There's funding for them in the states. They call themselves one-stop shopping. No, they don't do teeth. They don't do the dental work. That's not one I keep telling them, you're two-stop because you don't do dentist, but um uh they don't like to hear that. But it's the mental health system falls down big time with teeth. So uh, Jim, we were lucky because once he was kicked out of his regular dentist that he'd had all his life, it was a huge loss. It was actually the first blog I ever wrote on my uh webpage for my book, if anybody wants to read it. It it was such a grieving thing when he was turned away from the dentist he'd gone to all his life. And somehow for me, it was like the last straw. And we just, you know, I wrote more about it than I will tell here today, but right now we're lucky because a dentist that I know who is a bench of a man took Jim and only accepts the medical assistance or Medicaid payments for teeth. But Medicare or Medicaid payments for teeth is like less than one-fourth of what a dentist would get for private dental insurance. So he is subsidizing what uh Jim's dental care. And on top of that, the government is really slow about paying. They could be like six months, eight months, a year or more behind in their pain of him. So this we should have a program on this.

SPEAKER_02 8:41

Yeah. So thank you. Um thanks for the camaraderie here. I mean, it's just so, and and just to to add an emotional thing to it, the dentist that we go to is the young man who went to school with my son. They were friends, and so it's one of these examples, which we're all very used to at this point of there, but for the grace of God, could my son have gone? And and honestly, he was fantastic with my son. They remember each other's birthdays. He kept going, Oh, Ben, I love you, man. Like I've always loved you in middle school, and we just want the best for you. And if we don't take care of your teeth, you know, the infection are not just teeth, the infection in your teeth can go to your heart, and anyway, your brain, you can die from bad teeth, yeah. Right, right. So it's an unspoken side effect of this horrifying illness. And thank you for sharing that. Okay, done with that. We'll do an episode later on that. So, Mindy, you went to the NAMI convention. Tell us about that.

SPEAKER_05 9:46

Yes, it was in Minneapolis, and I I wish I could have been in DC with me and Sue, but I was uh already scheduled in for some things at the convention here. So I got to meet one of our former guests there, Joel Cochran, who's the CEO of Clubhouse International. And so we had him on way long ago, and it spurred on some work we're doing in Minnesota to get a clubhouse in Ramsey County, the county I live in. And it was really fun to just talk with him in person and talk about when he was on the podcast. So we have been doing this podcast long enough to be collecting up a lot of famous people, and sometimes we actually get to meet them in person. And then I also met a mother, one of the things I got to do at the Nami Convention was sell books. They didn't have an opportunity for very many authors this year like they usually do, but there was, they allowed authors from Minnesota to spend a couple hours at a table selling books. So I met um this woman called Jenny, Jackie Johnston from Michigan, and she wanted me to greet both of you. She loves our podcast, she has a son with schizophrenia, and she's watched even the beginning episodes, but still she asked, How did we meet each other? How did we start the podcast? And so I thought if she's asking that, probably at this point lots of listeners would want to know. And since I was the third one on board, maybe one of you could uh tell that story.

SPEAKER_02 11:29

I think I read Mimi's book and uh Bob Colker's book, Hidden Valley Road, had just come out. And I think I contacted Mimi to say I loved the book. And did you read Hidden Valley Road? And she said yes. I just spoke to Bob Colker, and then the three of us did a little conversation with Laura Pogliano, who is very, very active as well. Fortunately, her son passed away. Um and so we did, and that is available on YouTube. We have it on YouTube as part of our channel. Uh, is that right, Mimi? So you connected me to Bob, and then we did that. And then I read your.

SPEAKER_01 12:12

As far as the podcast, we just we were just talking one day, Mindy, and we said, Well, we should do a podcast. It was really like the kids in the garage going, we should make a band. We just sort of did it.

unknown 12:24

Yeah.

SPEAKER_01 12:26

And I don't even remember. Oh, I think I mentioned you, Mindy, because you and I had spoken. You had called me, yes. Yeah, it was all very organic. Okay. Nothing.

SPEAKER_02 12:37

And Mimi and I have met briefly in person once. Mindy, I have not met you in person yet, but that's going to happen. Uh, it's all been through the magic of Zoom.

SPEAKER_05 12:48

And well, it's complete synergy. So we all play a different instrument. So I guess it's a good band here. It's a good band. All right. Thank you so much. And then the last thing I want to say about convention, you know, they had a lot of really uh good workshops. And I picked, tried to, I did pick the ones on serious mental illnesses, but the best one I went to was on clozepine, our topic that we talk about here quite often. And it was Dr. Robert Cotis, who's a psychiatrist from Georgia, who's like our Dr. Leatman, who's been on here and who we refer to. Um, he's an expert and an advocate and a wonderful psychiatrist who believes in clozapine and says a lot of the same things that we're going to hear in a minute from about from Sue about the and when we talk about the angry moms. Um, but I but he started out his workshop. And Sue, I'm not sure when she gets on, if she's heard this or Mimi, but before he even hardly said anything, he said, are there any angry moms in the audience? So I raised my hand and I was actually the only angry mom there because people that are angry moms were pretty much in DC if they were available to be anywhere. But that's how he started out. And then he said, Thank you to the wonderful work that the angry moms are doing. They are raising the roof, raising visibility of the problems that are barriers to closipine. And then he gave his workshop, which was, you know, a lot of the things we already had on our program with Rob Lateman. But then at the very end, he went back to the Angry Moms. And again, he said, they are doing wonderful work. He talked about them being in Washington, DC. And um, I was so proud to be an Angry Mom. And then I asked Nami, the person who had introduced him was um Terry Brisbane, who's with who's the uh senior program chair for or Brister, I should say, with NAMI uh national, and asked, was what was NAMI doing to help the Angry Moms? And she said if they had uh been contacted by the Angry Moms, they would have helped with publicity and they could have put it all over social media. And then, of course, there'd be even more numbers. So um I connected her afterwards with our guests. So I hope we can talk more about that when she comes on. And I'm gonna maybe Mimi uh would like to introduce our guests since you were both in DC.

SPEAKER_01 15:33

Okay. Um, yeah, it was a fantastic experience, which I think was very positive and had an immediate effect to some agree degree, which was great. Now, Sue is the founder of The Angry Moms, and um just want to bring her on as far as introduction. Um, you know, we all are parents of adults with schizophrenia, and Sue is one of the members of the Dr. Leitman group. And I think she just reached a point where she got so fed up that she just took off with this thing, and it's really powerful. And I'd like actually to hear her tell us the story of how her her breaking point. So let's bring her on.

SPEAKER_02 16:20

All right, Sue. So if you turn your camera on, if you're watching on YouTube, Sue's coming on now. Um you hear us talk a lot about Dr. Leitman. And if you don't know what we're talking about, please check our other episodes. We have an episode where we spoke with Dr. Rob Laiteman, and he is a person who administers clozpine or closeryl very carefully and with a lot of success. I wish, I wish I could get my son to go back on cloizapine, but it it isn't where he is right now. But there are issues with clozapine, and we have, you know, check our episodes. We've done uh we've done many episodes on its effectiveness, but specifically, there is an issue that keeps a lot of people from going on clozapine. And I believe the angry moms are trying to change that. So welcome, Sue Maida. Thank you. Tell us, tell us how this began.

SPEAKER_03 17:21

Well, about 20 years ago, my son started to act weird, and I thought he was rude and obnoxious, and I didn't understand what was happening. And over the years, it kept getting worse. And then he started talking about tasting blueberries and lemons, and I thought, what's that got to do with anything? But he started being very angry, and so I would call and Google everything and anything, trying to figure out what was going on, and when I would call helplines and that, they would just seem very, very confused. So I floundered and floundered. Well, finally on Facebook, I found about 10 different groups that talked about things that my son was doing. So I joined all of them and cried my eyes out nearly every day hearing the horror stories on all of these um different Facebook pages. And I also joined a bunch of Zoom um support groups. And on one of the support groups that I joined was Laura Poglianos. And at that time she was working with Sarda. And of course, I had no idea what Sarda was, I had no idea what NAMI was, I had no idea what any of this was. All I knew was that my son was getting worse and I needed help. I didn't know what to do. Well, luckily, I met Rachel Strife at Laura's Zoom group, and she started to talk about clozpine, and she started talking about this thing called psychosis. And I thought, what is that? And um, she recommended that I take the family-to-family not me class, which I did, but I still could not identify with anything they were talking about. It was so different than the experience I was having, because they did not talk about psychosis and serious mental illness. It was much more focused on other things like depression and anxiety and that. They did a little bit on the psychosis bit, but I wasn't recognizing it. So I continued to follow Laura and Rachel were extremely helpful, and I thought, oh my God, that's what's happening to my son. And I just had to stop following many of the other groups because it was too heartbreaking. Everything was so negative, and there was no hope anywhere. So I held on tight to Team Daniel because it was the only hope I ever found.

SPEAKER_05 20:08

Could you tell our bit listeners who don't know about Team Daniel what that is?

SPEAKER_03 20:13

Yes, Team Daniel is the group of people that follow Dr. Leitman, and Dr. Leitman is not a psychiatrist, and he had no interest in psychosis or anything else till it hit his son Daniel. And he and his wife are both doctors, wonderful people. But after years as professionals, begging and demanding better treatment for their son, they got nowhere, and they said, No, we're taking this on because Daniel deserves better. So Daniel was the reason that they had to find better answers, and they have, and to this day, 15 years later, the Latemans, Dr. Leiteman and Dr. Amandell, meet with us three hours every Saturday to listen to our stories and to offer us hope. And the Team Daniel parents, that's what we call ourselves, uh support one another and offer hope. So that's what Team Daniel is. And um, I try when I get a little strength back to go back to some of my other Facebook pages. And when I hear the heartbreak, I try to encourage them that there is hope and to look into this, but it's very hard because people are so destroyed.

SPEAKER_01 21:43

So and also it's not easy, it's not just like you decide, oh, quasipine, and you call up your local closipine provider and have it taken care of. It's it's it's a battle, it's a battle every step of the way. So tell us about your encounter with Dan Gillison, who's the head of the. Of NAMI?

SPEAKER_03 22:01

Well, I was disappointed in the information I was getting from NAMI. And so I thought, well, I'm going to go to this Michigan conference. And it was last summer around my birthday at the end of July. And I listened to presentation after presentation about all the wonderful programs that are going on in the state of Michigan where I live. And I can't remember the names of the people, and I'm glad I don't, or the names of their organizations, but I remember specifically one woman's talking about all the wonderful things they're doing and her 20,000 employees working hard for mental health. And I thought, where are these people? 20,000. I can't find one. And so after listening to all these presentations and that, I thought, this is not right. They're not even talking about what I'm dealing with. They're talking about silver sneakers and depression and anxiety. And I'm like, this is a different world than what I'm living.

SPEAKER_02 23:11

Right, and we're not, we're not discounting those as mental health issues. No, absolutely not. Miami has definitely broadened itself with some of these things. But schizophrenia has and severe psychosis has kind of gotten lost in the shuffle.

SPEAKER_03 23:26

I think we can all it just wasn't my world. It wasn't my concern. Of course, those things are all important. They help so many people, but nothing addressed the hell I had been living for 20 years. And you know, the chief executive officer of NAMI. And also Kevin Fisher, the executive director of NAMI Michigan, had spoken. So I knew who these two men were. And they were sitting at the table right next to me. And I thought, I've got to go outside. I need a break. But for some reason, I stopped at the table and I said, Excuse me. And Mr. Gillison was so kind. He just turned around and he said, May I help you? And those words just brought me to tears. I thought, can you help me? I don't know. And he said, Well, what's wrong? I said, Why won't you help my son? And he said, Well, what's wrong? I couldn't talk. I couldn't breathe. I just stood there shaking. And he was so kind. And he just said, just try to explain what's the problem. I said, My son needs help. And nobody will help my son. And he said, Well, tell me a little bit. And so I just explained, and I didn't really understand what psychosis was or schizophrenia or anything. I explained a little bit and he said, Tell you what, I'm going to have Dr. Ken Duckworth call you because I think he could help you. And he's a wonderful man, and he'll tell you what he thinks he can do. And he gave me a doctor. And Dr.

SPEAKER_05 25:08

Duckworth, just for the listeners, Dr. Duckworth is the NAMI doctor. The medical director, yes. The medical director. They call him the NAMI doctor. He was actually there um uh 10 or 12 years ago when I was on the NAMI board. So he's been there a very long time. So he's a wonderful man.

SPEAKER_03 25:27

Yes. Yes. Well, I was shocked as can be when um a Dr. Duckworth called me that night. And I believe when I was talking to Dr. Gillison, uh, I I mean sorry, Mr. Gillison, I had told him, I'm not alone. There are other moms that are having this problem, and no one seemed to be helping us. And he said, Well, who are these other moms? And I said, We're just angry moms. And somehow it became Sumaida invented angry moms. But that's all I said. We're just angry moms. And so Mr. Duckworth called Dr. Duckworth called me and said, So I hear you're part of Angry Moms. And I'm like, okay, yeah, we are, we're angry because on the Zoom meetings with Laura and Rachel, we were very angry. And Dr. Duckworth was very kind and he recommended that we call our national our local authority and things like that. But I thought, okay, and I was just too traumatized to even take in anything he was saying. So I kind of just thought, well, nothing came of that. But I reported it to the Fab Four, as I called Dr. Leiteman, Dr. Mandel, Rachel Streifen, Angela Brisbane, all from Team Daniel. And I didn't think anything else would happen. And I was completely shocked in August when I got an email from Christina Bott. And she identified herself as co-worker of Dr. Duckworth. And she said that she had heard that we were facing some struggles, and she wanted to know how widespread it was. Well, I went from angry to livid, I thought. We're having some struggles here.

SPEAKER_05 27:20

A little bit. And shouldn't they know already how widespread it is?

SPEAKER_02 27:25

Well, what are what are the angry moms angry about and how did you wind up in Washington?

SPEAKER_03 27:32

Well, I posted on Team Daniels Facebook, Christina Bott wants to know if we're facing any struggles and how widespread it is. And if you have any concerns, just text below here. And I don't even understand this Facebook thing. Well, within the next three days, I had hundreds of replies. Well, since you asked, blah blah blah blah blah, and I cried my eyes out because the stories were so horrific. And I said to Christina Bott in an email, Well, here's an example, because I would just type up what the moms had said in Facebook or cut and paste them. Actually, I just literally cut and paste screenshots of these Facebook things taking out everyone's names. And Christina Bott was like, wow. And I'm like, Yeah, I told you there's a problem. So she asked if we would do a listening session and send in impact stories, which we did in September. It was fabulous. And SPAA got involved.

SPEAKER_05 28:44

Gordon Levine was one of the people on and I will just say um SPAA for people who don't know is more from Sarda. You mentioned Sarda earlier, Sue, and they rebranded a couple of years ago to be more recognizable to the public. So now the group is schizophrenia and psychosis action alliance. And I'm actually on that board, and Gordon Levine is the executive director. So keep going, but I just wanted people to know, and so as some of the groups uh have broadened, then um schizophrenia and psychosis action alliance has actually has a narrower mission of focusing on schizophrenia and psychosis-related illnesses. And Gordon says that NAMI now even refers people who are specifically wanting to work with schizophrenia or know more about it and so forth to SPAA. So, you know, nature abhors a vacuum. And so the focus now with serious uh schizophrenia and psychosis illnesses is resides in other organizations, and one is SPAA.

SPEAKER_02 30:01

So and what was SARDA, just for people who don't know what that was.

SPEAKER_05 30:05

SARDA was I wasn't on the board for that. It was schizophrenia and related disorders disorders. Yeah, okay, great, something like that.

SPEAKER_01 30:17

Neither, neither acronym rolls off the tongue, but no, that's true.

SPEAKER_05 30:24

So you guys wound up when the rebranding was being done with your artistic mind.

SPEAKER_02 30:30

So there's a there's a lot to be angry about, and and I do have to say, look, NAMI family to family, I'm a state trainer, I I truly believe in it, but it's very, very broad, and I do agree that schizophrenia and psychosis, because it can be so hopeless, gets the short shrift a lot of the time. And so, but there are organizations that do deal with that, and so we do want to give hope. Plazeril is not the only medication in town, but it is a medication, as we've discussed in other episodes, that can work really, really well for people who don't respond to anything else. And even we've often said it should be the first thing prescribed, not the last thing prescribed. But what gets in the way is blood tests. And I just read something on WebMD about a horrifying story when the names were changed, where somebody was doing great on closerl and missed a lab test, and so they had to take him off, and he ended up injuring himself. It's he he took his own eye out because the voices told him to, because because of the lab test, he missed a lab test, they had to take him off the medication that worked, and the results were tragic, and it's not the only story like that.

SPEAKER_01 31:46

Well, and I think it's very important to tell our the people listening very specifically what our ask was when we went to Washington.

SPEAKER_02 31:54

Yeah, so what what was the lobby?

SPEAKER_01 31:56

You have to have an ask. And our ask was very specifically about the REMS, which is the risk evaluation and mitigation strategy. And what that is, is it's a requirement placed onto specific drugs by the FDA, drugs that are considered dangerous for one reason or another. So we've already talked about clazepine, and I don't want to take up too much time with the history of clauzapine, but uh clozepine is a drug that has gotten basically a bad rap, and it shouldn't. It's you know, we all witness that is the only drug that offers meaningful recovery from schizophrenia and actually addresses the negative symptoms, which is in a lot of ways the most insidious aspect of the illness. And so, because of a lot of things that had gone wrong, and this one particular um side effect, which is called a granulocytosis, which is a low white blood cell count, which can cause death in a tiny, tiny, tiny in a very tiny.

SPEAKER_02 33:05

Not to say it would be significant if it happened to our own child, but less than one half of one percent, you know.

SPEAKER_01 33:12

So that's not and not only that, neutropenia, which is the agranular cytosis, you know, there's many other medications that cause it also. None of them have these REMs attached to it, only calozepine does. It's a very discriminatory stipulation, and what people need to understand is that it is hard enough, it is a miracle if you can get your kid compliant on medication. It's like it's to get to that point is such a win. And then to have this particular requirement put on top of it, where in addition to taking their meds every day, which most of I don't know about you guys, but I spent literally decades driving to my son's house every single day to make sure he takes his medication. You add to that that they have to go to the hospital once a week for the first six months and then once a month after that to have this blood test. It puts it right out of the ballpark. I mean, it's like the the there's you know, they're not gonna do that. And in addition to that, um, because of this requirement, the pharmacists and the doctors have to be registered for REMs and have to comply with certain things, and there's just this top-heavy behemoth of bureaucracy attached to it with a hundred possibilities of things going wrong over and over and over again. There was an incident in Texas a few weeks ago, where same thing, guy went to get his clozepine, and he had even had his blood test, and the um there'd been a snafu in the chain of communication, and it didn't get to his pharmacist, and the pharmacist wouldn't give him his clozapine. And he, and if you stop cloizapine suddenly, that's the worst. And he plummeted into psychosis and ended up running through the streets with a toy gun and was shot and killed by the police. And um, these things don't need to be happening, it's an infinitesimal number of uh people who get this, and it's very low risk for young people, it's mostly geriatric patients, and basically it's creating a situation where the one drug that will help people is unavailable to them. So that's what we went. We went to talk to the senators and talk to the congresspeople and to implore them to help us get the REM stipulation taken off across.

SPEAKER_05 35:42

And what happened? And before we get to that, to kind of fill in the um the story and Sue's role in it, our guest. Um, so when after Sue asked for the angry moms and their input, um I was one who sent in input and become an became an angry mom right away. I'm I know Mimi did, and I'm not Randy's son is unfortunately not on Classipine, so you may may or may not have. But after that, I got to think he was, he just isn't anymore. Right. So then, so I don't know, are you an angry mom too then or not?

SPEAKER_01 36:18

Since he's not we're all angry mom. Well, we're all angry. But I will be.

SPEAKER_05 36:23

Yeah, you could be in the group, you should be in the group, but anyway, um, to make sure we're doing something very potent, since I'm the public policy director for schizophrenia and psychosis action alliance. I contacted Sue and said, you should hook up with with um with us uh because we are focusing on schizophrenia, but we hadn't really done as much action-oriented things since I've been on the board. We're more looking into research and things. So Sue hooked up with Gordon Levine, and I think you got Rachel Strife involved, and then tell about how this day came about because it wasn't just the Angry Moms, it was also Schizophrenia and Psychosis Action Alliance, who paid some big bucks to organize this day. And we worked with um the Healthcare Um Alliance for Health Policy to have a um webinar in the morning that I watched from many from Minnesota here. And then there was the congressional briefing, which I really hope you guys will talk about who were there. And that was done in partnership with the American Association of Psychiatric Pharmacists. I mean, this is a group that knows their stuff, knows what they're doing, and is siding with us. I mean, this is like earth shaking. And then there were the congressional visits, but all of this was done with what I think is becoming a very powerful schizophrenia and psychosis action alliance. And because of the angry mom. So, Sue, tell us about and Mimi, what you did with this ask when you were in Washington.

SPEAKER_03 38:05

Go for it, Sue. Well, again, just briefly, um, in September with the NAMI listening session, I um Gordon contacted me and said, wow, I I want to get involved in that. So in September, he participated in that. And then in November, we had another session just with SMPAA. And from that, Rachel and I were working on surveys, gathering information for SMPAA, and Rachel continued to work with Gordon, and they decided that this was a good idea. And so I started contacting angry moms and said, Who wants to go to Washington? I sent them the information from Rachel, and we got there, and I don't know. I've been told that we were heard, and it's it's really amazing.

SPEAKER_05 39:07

Um, you know, it started when I talked to Mary Palafox from SPAA, she was so supportive, and Gordon Levine has and I should say Mary, at the time you talked with her, was the president of SPAA. She's now the past president, but she was the president when you first hooked up.

SPEAKER_03 39:26

Mm-hmm. Just amazing and very, very supportive. So basically, like Mimi said, our main complaint is if we somehow miraculously find out what is wrong with our child, which is not easy, and then we finally somehow find a miracle of some sort of hope that there's something to do to help them after hearing so many horror stories of how it's over. And then if we somehow find a doctor that will prescribe clozapine, which is not easy, I've been taking care of the provider list for Team Daniel for two years, and we only have 140 doctors in the whole country. And all of those don't do it very well, including my sons, that refuses to follow protocol of Dr. Leitman's suggestions. But even if we get that far, then we have to do this blood testing. Like Mimi said, it's very hard with our children that don't believe they're sick. They suffer from anasygnosia, and many professionals don't know what that is. So why would they need medicine? Why do they need blood tests? They didn't, they're not sick. But somehow we get past that. Our kids get better. It's a miracle they come back to life, and then because of a computer glitch or a miscommunication, our children. I don't care if he's 42, he's my baby, can't get his medicine, and he goes back to thinking I'm an alien and he must know.

SPEAKER_05 41:06

So, yeah, we were so much passion with this event. And I share that passion because my 45-year-old son was 16 years without clozepine because of a lab error. They just made it clear. He, Dr. Lateman, went back, looked at his records. He never had a granulys, a granulocytosis in the first place. But then he was on the list across the country. This list by the FDA saying no one anywhere in any little nook or cranny of the United States can ever prescribe vozepine to him because uh of these REMS situations. So believe you me, I'm mad about it. So could you tell about the briefing? Because I I got a chance, I think we all did. Mimi and Sue were there, and Randy and I watched it ahead of time. It's a 45-minute video that this podcast is going to be unveiling when Randy puts this show up tomorrow or whenever she gets a chance early next week. So for our listeners who didn't get a chance to go to Washington, be sure to tune in to this program, but also click on the link at the end in the show notes because you can watch what happened in Washington, DC. And I was my socks were knocked off by the two young people speaking who have schizophrenia and the um psychiatric pharmacist from Maryland who talked. She was great. Likely fourth speaker was the former executive director of the National Disability Rights Center Network, who um you know often is at odds with those of us trying to get care for our kids, you know, even if they don't want it. But he was on our side too, because of discrimination. So could you tell about those speakers and that that briefing, which I thought was spectacular?

SPEAKER_01 43:02

You know, one thing I just want to say before I want to let Sue talk about that is also uh the thing that happens with the closer being and the REMs that we end up doing, which is so crazy, is that the mothers end up, we end up stockpiling. We try and stockpile it, like you give them a little bit less, a little bit less, so that you have an extra stockpile on the side in case something goes wrong and they can't get. I mean, this is like 2023 in the United States of America, and we are fighting us, we spend 50% of our energy that could be used helping our kids, fighting a system that is designed not to help our kids. Imagine if people with cancer had to go through that or other diseases. We're not even fighting to save our kids, we're fighting to find our way through the system that we're stockpiling and hiding drugs and handing them to each other here, take this and you. To save their lives. It's ridiculous. Anyway, I just want to throw that in. But tell us when you talk about the kids jogging. They were the first one.

SPEAKER_02 44:09

Love it. I love it. Angry Moms. Yeah, the moms.

SPEAKER_05 44:12

You're so angry. The Annalisa, I thought the young people that spoke were much more buttoned down than we are. We're so professional. And Annalisa Chase, a 30-year-old from Washington State, from Mimi State, and then Michael Brisbane from Missouri. One thing I really struck me about Annalisa was she was uh nobody would guess she had schizophrenia. She's on Flazepine. And she said at the very beginning that most of the people, the vast majority of the people with schizophrenia who she was representing were not like her. She said, they're not like me. I am not representative. Most people are gravely disabled. But I was before I got uh clozpine, and I would be if I missed my medicine for even a day or two. So she was incredible. Um Michael was as well, and they're both so accomplished now.

SPEAKER_01 45:15

Yeah, you know, whenever I look at Michael, it breaks my heart because he's so wonderful, he's doing so well. And he's an example of what happens when you can get them on the cloizapine quickly. And quickly, quickly is huge. Again, we have the clozapine um designated as a drug of last resort where the doctors won't even consider um uh prescribing it or supposed to consider prescribing it until two others have failed. I mean, why? Why? Again, other diseases. What if you had cancer and you said, well, there is this one drug that we know will work, but before we can do that, let's try these other two substandard drugs just to say that we tried. And meanwhile, let's just sit back and watch your cancer grow. Well, that's exactly what happened. I mean, my son, it was 15 years in before I figured out myself, closine, and found Dr. Leitman. No provider had ever mentioned it to me. And I look at Michael, who is just spectacular and what a big heart. And I mean, he's just an incredible guy. And I think what would Nick's have trajectory, what would Nick's trajectory have been if I had known to get him on clausepine 15 years before I did?

SPEAKER_02 46:37

Right. Because one of the things when we have um Dr. Lieberman on and in his wonderful book, Malady of the Mind, is that the more episodes of psychosis there is, the more damage there is to the brain. And that early intervention is extremely important in reaching that kind of level of competency. My own son had had seven or eight psychotic episodes before he went on closapine. And even so, he worked his way up to full-time employment and getting off Social Security, but fighting the meds every step of the way because they made him tired. But we did the work, he was doing very well, not perfect, but I would take it. But when COVID came and he lost his job and he refuses to go back on closerails. So now he's on HALDAL and his hands are shaking and all those things. However, it is what it is. But even if it isn't early, there's still maybe he wouldn't have gone for a master's, like some of the people we've had on the program have been able to do. But whatever medication, if you can find one that works, why put obstacles in the way? So we're almost at an hour, guys. So let's go back to, and this is so important, I don't want to cut it off, but let's go back to what happened in Washington and whatever else you want to cover. And I want to know how your son is right now, also, Sue.

SPEAKER_01 47:56

Yeah, tell us more.

SPEAKER_03 47:59

Well, to answer the earlier question, the briefing was amazing, and it began with Linda Mims from SPAA, who I have never heard of. I sobbed through her entire presentation. She was so spot on. It was so obvious she knew what we're talking about.

SPEAKER_05 48:15

And I would say here, Linda Mims is the current vice president of SPAA, and she's phenomenal, and of course, she's a mother with a son like ours.

SPEAKER_03 48:27

And I think that's the difference. You don't have to explain she knows, and no one could possibly believe what we live through, and to threaten to take that away every month from people like Annalisa and Michael and all of our children, it's so wrong. It's just so wrong. So um, I I think the briefing was absolutely amazing, and I hope everybody gets a chance to um see it.

SPEAKER_02 49:01

But um you say the link right now in case somebody can't get to the show notes right now, or what should they search on Google to find the is it on YouTube or it's going to be posted on the SMPAA site, I believe.

SPEAKER_03 49:14

And it's also going to be posted on our new website. Rachel has um worked with a few people and put together our own webpage, and it's called theangrimoms.com. Got it.

SPEAKER_05 49:28

The one we're talking about, it'll actually be the first posted on this program when Randy puts it up. So it's a real long thing. It's a link, so I don't think it's an easy thing. They just could go to schizophrenia three moms in the trenches, look at the episode, and it'll be in the show notes. Right. Okay, thank you.

SPEAKER_04 49:47

So, Sue, tell us how your son's doing now. Not good enough.

SPEAKER_03 49:58

Um, I am thrilled today. He held his niece and he's so kind and gentle, his loving self. But he's far from where he should be because he's not getting proper care, he's not at a level where he's um healing well, he's so much better, he's working, he lives alone, and he's so kind and wonderful, always checking on the family, but he lives in isolation in his basement because he's still suffering so many things, and I can't get the doctors to listen to Dr. Leitman because they know what's best and they just won't listen.

SPEAKER_01 50:42

And you know, I think it brings us right up to something that is, you know, my big axe to grind with all of this, and it's not causapine specific, but it certainly is schizophrenia and serious mental illness specific, is that my experience for 20 years has been that the medical profession's position on this is if we can just medicate them to a point where they are not a problem to society, that that's success. And I watched my son sit in a dark room also, Sue, not working, not anything, for 15 years, sit alone and get obese and unhealthy, and his teeth rotting out of his mouth. And he was a success story because he took his meds every day and he wasn't punching holes in the walls and he wasn't hurting anybody. Well, you know, that's not a recovery, and that's not a success story, and that is not acceptable. So if you wonder why we're angry, that is what is at the crux of it is that the attitude of the entire system is just let's put them somewhere where they're not gonna bother us. You know, these are human beings, they're part of this world. We're not doing them a favor by giving them a place in the world. They have a right to a place in the world, and this just has to change.

SPEAKER_03 52:05

Well, the other thing is is so insane is that these people, like my son, are so wonderful and so bright and so able to help so many people if they would just get the help they need. And it would save billions of dollars for everybody, and it would solve so many problems in society, but no, instead, the professionals just say it's good enough and just let them rot or let them run the streets wild unmedicated because they have to ask for help.

SPEAKER_05 52:47

Yeah, it would angry moms have done so much. And I just want before we end, I hope you'll tell about the demonstration, but I just before we end with the briefing, I just wanted to say that um I had a chance to talk to Gordon Levine, the executive director who was there too, of course, of SPAA. And he's tell your listeners that um we're all very happy that there was a large amount of interest from the congressional members about how the REMs are impacting so many families. And um there appears to be broad nonpartisan interest to sign a letter to send to the FDA, um, both in the Senate and the House, and that individuals will have opportunities in this coming week to join in and encourage their Congresspeople to sign that letter. So I think you can say that this was a success. The Angry Moms in Washington paired up with SPAA. Yay, congratulations, a huge success. And then there was one more part of this day that you both participated in that was organized just by the Angry Moms. And I hope Randy's going to include pictures of this for those of you who watch this on YouTube. But tell us about those wonderful demonstrations you did in DC. Why don't you take it to?

SPEAKER_03 54:17

Well, Mimi bless her heart, sleep deprived from uh overnight trip, made her huge banner that we wore, and we all had our angry mom t-shirts and we all had our signs, stop the REMs from stopping our kids' medication, and we had our tombstones to represent the lives that are lost every day. Approximately seven people a day die because of the hurdles and hardships placed on getting this medication by the REMs, and we marched around chanting and we staged sort of like an AIDS type lay down, hold the tombstone type things. We were, I don't know, I felt a little silly. I've never done anything like this, but we seemed to get some attention, and some people seem to think it was a good idea. So I'm much more of the crying on my own in private. I felt uncomfortable, but like Jackie that I talked to another angry mom said, I would do just about anything to make sure my son doesn't have his medicine taken away. So that's what we did. We marched, we chanted, and we had a wonderful candlelight ceremony in memory of all those that died.

SPEAKER_02 55:53

Wow. Tell our listeners how they can get in touch with Angry Moms, where what's the best Facebook page, what resources would you like them to have?

SPEAKER_03 56:03

Well, I guess the only one that we really have is our website now, which is called again, you have to put the word the in front of AngryMoms.com because Angry Moms.com must have been taken. So we're the angrymoms.com. And um, on there is a link to join the army, is how Rachel terms it. And many people, over 100 people have already joined just in the last few weeks since the webpage went live. And I don't know how people have found it up to this point. And um, if you want any information on what we're talking about with the REMs and what we're talking about with Clause Pine, and if you want some hope, we can definitely hook you up with Team Daniel.

SPEAKER_02 56:53

And there's a Facebook page for Team Daniel as well. And Daniel is uh Dr. Leiteman's son, by the way. And they just did a comedy night in Maine, which I hear was fantastic. Everybody who participated, I know Daniel is a comedian, and everybody who participated uh deals with psychosis and schizophrenia. So that seemed amazing. Uh yeah, so thank you for that. Any last words? Thank you so much for joining us today, by the way. I know you did fantastic. I mean, you know, Mimi was prepared to talk about it, but having you here made it extra special. So thank you.

SPEAKER_05 57:35

My last words, and probably Mimi and Sue want to have the very last words, but my last words are I bet there'll be a lot more angry moms joining this group once this program is aired.

SPEAKER_01 57:47

Yep. I think so too. Well, I just want to thank Sue for coming on because I know it's wasn't so much in a little bit out of your comfort zone, but um it makes a big difference. It makes a big difference. And I was telling Randy and um Mindy, you know, every time when we get together with the team Daniel, or you know, every time I get together with these women, it's not only women, there are some guys, some dads there too, and they're fantastic. Um, but it's such an army of, you know, yeah, we're angry. You know, my sister's a lobbyist, and she said to me, you know, maybe you don't want to like request your time with um with the senator staff by telling them that you're the angry moms. It may not make them want to invite you in. But but my point is, yeah, we're angry, but we're fueled by love. We're fueled by love and it's fierce because what we're going through, and more importantly, what our kids are going through is dire and it's obscene and it shouldn't be happening. And if we weren't angry, we wouldn't be alive. But it's not a destructive anger, it's like it's good trouble, and we're gonna keep doing it.

SPEAKER_05 59:04

And as a former elected official, I can say this is the kind of group I always loved to meet with.

SPEAKER_02 59:12

People with heart. Yep. Making a difference. Oh, this is awesome. I can't wait to get this up and out to the public. Sue, thank you so much for joining. Mindy, we're gonna get that briefing up as well. We'll talk about that. Our next guest on episode 68, or maybe if the briefing itself is 68. Anyway, next week we're gonna have Dr. Lieberman on. And at the end of the month, we're bringing my cousin Danny back to do a part two about social security and disability. She's preparing for that. So we have a lot ahead, and thank you so much for listening to Schizophrenia Three and tonight four Moms in the Trenches. 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.