Tardive Dyskinesia (TD) - Managing a Difficult Side Effect (Ep. 119)

Guests: Rakesh Jain, MD, and Sherland Peterson, who has experience living with TD

More than 14 million Americans have a serious mental illness, such as bipolar disorder, major depressive disorder or schizophrenia – conditions that can be treated with antipsychotic medicines. Use of these medicines has increased 22% in recent years, particularly within the last 10 years, in turn increasing the risk of a debilitating chronic movement condition called tardive dyskinesia (TD), which can cause uncontrollable and repetitive movements that make eating, drinking and walking difficult.

While TD can be treated, integrating new medicines into existing treatment plans can be difficult, and people living with schizophrenia may worry that treating TD could cause regression in their mental illness. A one-pill, once-daily treatment option exists that can be integrated into existing mental health treatment plans, helping people manage their mental health and TD in tandem.

We Ask:

Dr. Jain:

·       What is tardive dyskinesia and what are the common signs and symptoms of this condition?

·       What is the connection between tardive dyskinesia and the use of antipsychotics, and what are the primary challenges that patients and doctors face when treating this condition?

·       What is this one pill, once-daily treatment option and why is it an important option to consider?

·       Where can people go to learn more?

Sherland:

·       Can you share your personal story of living with tardive dyskinesia?

·       What impact has tardive dyskinesia had on your life, from daily activities, to your mental health and social events?

·       What do you wish more people knew about tardive dyskinesia?

Thanks for liking and sharing the podcast! 

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

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

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

Transcript

Copy Transcript Copied

SPEAKER_01 0:00

We humans are designed to absorb energy from each other by looking at each other's faces. And people with tardive dyskinesia get betrayed by their own body. But I'm a psychiatrist. And because I'm a psychiatrist, I've got to deal with people's suffering.

SPEAKER_04 0:17

I was a very outgoing person after I got the diagnosis and was on a treatment plan. Um, it was like a light switch. I had so much hope. I can't tell you how important hope is to have in your life.

SPEAKER_03 0:32

Sometimes medication is hard to take because of side effects. Tardive dyskinesia is one of those. Today we talk with Dr. Rakesh Jane, a psychiatrist, and Sherland Peterson, who has experience living with TD. And yes, there is hope. Welcome to our podcast, Schizophrenia. Three moms in the trenches. From the place where schizophrenia and real life collide. East Coast, West Coast, Middle America. With Miriam Feldman, Mindy Gryling, and Randy Kaye. This is Schizophrenia Three Moms in the Trenches, and we have been wanting to do this episode for such a long time. It's been a scheduling challenge, but I am delighted today to cover a topic that many of you listeners have asked us about, and that is the side effect of many medications called Tartive Dyskinesia or TD. And we have a very busy Dr. Rakesh Jane, who was finally available. We, as you look at uh, if you're on YouTube and you see my window and Mindy's window, it's light out, and it's really light out on the West Coast where Mimi is when she pops in, because we're recording in the morning and we normally do it in the evening, but we're so excited. And then Sherlund uh Peterson will be joining us as well. And this is going to be a very exciting show. We, if you're just joining us, are three moms. Mindy Gryling has written a book a few years ago now called Fix What You Can about her experience as a state legislator with her son's schizophrenia. Mimi or um Miriam Feldman wrote He Came In With It about her experience as a mom and her son Nick. And my book is Ben Behind His Voices. Same thing. We're three moms with three sons, all have schizophrenia in various stages of recovery right now. And my book is available. It is 12 years old now, but the audiobook is available. That was done in 2022 and updated. But if you're listeners of the podcast, you know we're still going in and out of the forest of uh learning and experience. So to bring us straight to what we're talking about today, my son is currently on a medication that has a documented side effect called tart of dyskinesia or TD. And Mindy, I know you're experiencing that as well. And so, you know, more than 14 million Americans, and it doesn't have to be schizophrenia, could be bipolar, major depressive order or schizophrenia, have these conditions that are treated with antipsychotics. And these can be very effective, never effective enough, but we have what we have. Unfortunately, one of the side effects that many deal with is TD, which can cause uncontrollable and repetitive movements that make eating and drinking and walking and frankly getting a job difficult. And so we have with us today not only Sherland Peterson, who has personal experience with TD herself, and is I'm so glad you're here. Uh Dr. Rakesh Jane, who is a clinical professor, Department of Psychiatry, Texas Tech University School of Medicine, to educate us. So welcome, welcome to both of you.

SPEAKER_01 4:07

Yes.

SPEAKER_03 4:08

So who is it?

SPEAKER_01 4:09

Charlotte, I can't hear you.

SPEAKER_03 4:11

Sherlyn didn't say anything right now.

SPEAKER_01 4:13

Now I heard you. But no, thank you for having us. Thank you for having us. And before we get started, may I just say you called us the experts. But the honest to God truth is the real experts in schizophrenia are the family members, particularly the mothers. I've learned more about schizophrenia from talking to you folks and learning from you than any research I've ever conducted. So I'm not the real expert here. All of us are real experts. So let's acknowledge that.

SPEAKER_03 4:45

We receive that, and thank you so much for saying that. We really appreciate that. We have uh questions for each of you. I feel like we should start with you, Sherland, because having experienced it, um can you share with us your personal story of living with TD?

SPEAKER_04 5:04

Well, first of all, thank you for having me. And I'm sharing my story, um, my personal story on behalf of Teva. I was diagnosed with TD in 2018. Um, I for some reason didn't realize what was going on. A lot of doctors didn't realize what was going on with me. Um, my mouth, TD um struck me uh very uh cruelly in my face, particularly the left side of my mouth, and it was sagging. And then people started coming up to me and asking me when I had a stroke. Now, if I had a stroke, when you had a stroke. And then a family member pointed out your speech is slurred, your mouth is hanging. I mean, it was really, really drooping, and my enunciation was just incredibly horrible. And um, I went to the hospital, the emergency room, um, was told I didn't have a stroke, they didn't know what was going on, I of course panic, and I um my whole life took a turnaround. I became antisocial because you know, the first thing you see when you look at a person is surface, and there was a great deal of shame involved. But once I um saw my mental health professional, uh he told me I had TD. And believe it or not, having a name to go with what you're suffering from is just unbelievably um comforting because you know it was like the unknown versus the known. I didn't know whether my treatment plan would work or anything like that, but I just knew that I had a name. And believe it or not, that just gave me so much courage.

SPEAKER_03 6:54

Thank you so much. And I I do want to mention um that we are not advocating or recommending anything here. We're simply sharing information. Sherlin, you shared that you're here with Teva. Teva is a pharmaceutical company, and one of the things we are going to make our listeners aware of is that there is an option available. It's not the only option, but we're here to learn about it and other options as well. But um, do we have any conflict of interests here that we need to disclose before we continue?

SPEAKER_01 7:29

Yes, um, conflict of interest is I'm also speaking on behalf of Teva. And when I discuss the medication, I'll be consistent with the packaging. So, but just like you, uh, my entire goal really is to educate, to educate, to educate. Because as Michelle said, uh, education and knowledge is real power. So thank you for giving me the opportunity to lay out the disclosures in full.

SPEAKER_03 7:59

Our pleasure, absolutely. And and to be fair, we have had other people on the podcast who have relationships with pharmaceutical companies, but just so everybody knows, every farmer, most pharmaceutical companies that I have worked with, well, all the ones I've worked with, and probably Mindy and Mimi, you can share the same thing, they have had what they call unbranded campaigns. So they're uh, for instance, I just went to the American Psychiatric Association and I did that on behalf of Berenger-Ingelheim. Their unbranded campaign is to say that schizophrenia has side effects, has effects other than the positive symptoms of hallucinations. And their campaign was not about a particular medication. Their campaign is about making people aware of cognitive deficits and negative symptoms. So pharmaceutical companies who put um love and care and information out there out there on behalf of the illness and its effects, that has my full support because we do, as you say, education is everything. So full awareness. So now that we've got that. Could I add in here?

SPEAKER_02 9:11

Could I add in here since you brought our names in too? I have myself personally never represented a pharmaceutical company. And I um am very particular about that having been an elected official, where I in here in Minnesota, no lobbyists or lobbying firms can even buy us a cup of coffee as elected officials. I've been retired now for a dozen years, but I still don't let anyone buy my lunch or anything of the sort. Um, but I have uh served on the NAMI National and the NAMI State of Minnesota board, and I'm active in Nami Ramsey County, and I also served on the board of Schizophrenia and Psychosis Action Alliance, and both of those two wonderful organizations certainly profit from funds from pharmaceuticals. Um the Treatment Advocacy Center that I also have a working relationship with does not take pharmaceutical uh funds. So we do have a complicated relationship, but I think um we are all clear now. And and I'm such an advocate, I will just say, for Plazopin, that that's why one of the reasons I don't want to get involved with any pharmaceuticals so that people know I am just giving my opinion as a mom who has seen what can happen to my son on that wonderful drug. And and so um I don't want to complicate that with anybody thinking I'm paid to say that.

SPEAKER_03 10:42

Great, thank you. Yeah, and we are we are telling it like it is, and we have had people on the podcast who are living successful recovery lives and uh a live your possible with an S Z in the middle of it. And they, you know, that is a pharmaceutical company website, but their unbranded campaign is to spread awareness of what is possible. So we're not completely free of that, but yes, we have been clear that Closapian has worked well for our loved ones. My loved one is on howdol right now, and so TD is a big part of what we're doing. Mimi, anything to add about that before we go on? Because I have a lot of questions for Dr.

SPEAKER_00 11:16

No, I honestly just for a very brief period in the beginning, had some issues, Nick had some issues with that, but that was 20 years ago. It's not something that we luckily have had to experience. Okay, thank you.

SPEAKER_03 11:30

So, Dr. Jane, uh, what is targeted dyskinesia? Common signs and symptoms. I have not seen in my son the kind of Bell's palsy-ish relaxing of one side of his face. I have seen different symptoms. Um, can you tell us? You know, let's educate us if somebody doesn't know anything about it. What is TD?

SPEAKER_01 11:49

Yes, let's get educated together, okay? Let's do it as a team. Because I genuinely believe Michelin's an expert, you are an expert, I'm an expert, but I will say this tardive for the most part, tardive dyskinesia for the most part, is widely misunderstood. So let's start with what it is, then I'll describe what symptoms it has and how to diagnose it, if you'll allow me. But look, I'm wearing green for a reason. It's mental health awareness month. Actually, that was last month, but the way I look at it, it's mental health awareness year. Why would I not think about it in June and July? I mean, come on now. Come on now. So I love it. Okay, we are on this together. Um, look, the single most important possession I have is my mental health. It's got to be that for you. It's got to be that for your sons, it's got to be that for everybody. So tartably skinesia is an unfortunate side effect of many of these life-saving medications called antipsychotics. And they come in two flavors: typicals, atypicals. Clozepine, you have mentioned, is an atypical, Haldol that you mentioned is a typical. The problem is there isn't an antipsychotic yet developed in this world that doesn't carry that risk. And I'm so glad your sons don't have it yet, but I'm afraid they're not out of the woods because they will never be out of the woods. It can develop three months after starting a medication, 30 years after starting a medication, 60 years after starting a medication. And the risk is 1% per year, 1 to 2% a year, and it's cumulative. It's cumulative. What is it? It's actually not Bell's policy. So Bell's policy is complete lack of movement, right? Of the face. This is the opposite. This is a hyperkinetic disorder, meaning it's this. So I'm actually showing it to you. Those of your listeners who might be watching this on YouTube, they can probably see me jerk my face or my tongue. And Ms. Sherlin, you set me straight, okay, if I'm doing anything that doesn't immediately ring a bell for you. Sometimes it's these writhing movements of the neck, of the jaw, could be hands, it can be toes, and it's progressive in many patients, and it leads to impact. So it's not a movement disorder, it's a movement disorder in a human being who has to speak, who has to walk, who has to cut their vegetables, who has to type. As Michalin said, who has to deal with their face, public facing? Look, we're looking at each other's faces for a reason. We humans are designed to absorb energy from each other by looking at each other's faces. And people with hard eye dyskinesia get betrayed by their own body. This happens in men and women, it happens in blacks, whites, and browns. It is sadly a disorder of so much impact that my passion, and I'm not a neurologist, I never wanted to be a neurologist, but I'm a psychiatrist. And because I'm a psychiatrist, I've got to deal with people's suffering. So yeah, there are specific treatments for it, but step number one is always the patient or their mother or their family member noticing that's the most important thing. Notice their speech, notice their face, notice their gait. If you see something, it's extraordinar to say something to your son, to your daughter, to your family members, clinician. So just I'll end my rather long introduction to it by perhaps recommending to you three ladies and to your listeners to go visit a website that is education. You're right. You're right. This is important to get educated. It's such a beautiful website. It's called tardiveimpact.com, t-a-d-e, I-m-p-a-c-t, tardiveimpact.com, and it teaches us, even those of us who are long-term healthcare providers, to not think of this as a small disorder. It's actually a disorder that overwhelmingly and negatively impacts people's lives. That's why recognition and treatment is just so important.

SPEAKER_02 16:45

Thank you. Now, if we don't get anything else, if if listeners don't get anything else out of this program, I think the point you just made is the one most important takeaway, and I could change my mind as the program goes along. But to me, um, I was always taught, and my grandmother had uh schizophrenia, so I've been following this much longer, even than my son, who's been sick for 25 years. But um, the fact that tardive dyskinesia is treatable, I think, is new. And so that because I always thought there's nothing you could do about it, if you're unlucky enough to get it, you are just screwed. So, Dr. Jane, could you tell us how long there has been something to do about tardive dyskinesia?

SPEAKER_03 17:32

And can it can it prevent the symptoms from occurring? Because two things I'd like you to clarify as well as you're answering this question. Yeah. One is uh when we teach this in NAMI family to family, and and they're always updating the information, but the latest information I've taught is that once this happens, it can be permanent. That even if you go, and the other thing is, does this have to do with dopamine treatment not being a silver bullet to just hit one part of the brain? Is it still because when you regulate the dopamine, you right now the antipsychotics regulate it in all areas of the brain, including areas of the brain where we need the right amount?

SPEAKER_01 18:15

Wow, great questions, ladies. And Miss Mindy, I appreciate appreciate your salty language. I am from Texas, where uh I like that. I like that. Okay, good.

SPEAKER_03 18:26

I'm from New York, I didn't even notice any salty language because that's how we speak.

SPEAKER_01 18:30

Okay, I like that too. I know that's what I love. Catching a cab in New York, it's so colorful, it's so colorful, but I I can answer um uh all those questions, I believe, with great scientific confidence. So it is preventable in many people. I wish it was for everybody. So there are certain rules to follow if you can. For example, don't use an antipsychotic unless it's clearly necessary. That's a given. Two, use one that is a balance of safety and tolerability. There are some medications with lower risk, some with higher risk. But having said that, the first priority has to be the patient. There's no point in preventing TD if the poor patient's schizophrenia is completely out of whack. The third thing is it is treatable. The problem is only about 15% of all Americans right now who have TD even have the diagnosis, which means 85% of them either have no diagnosis or what's more worrisome, they have the incorrect diagnosis. And I bet you, Ms. Sherlin, you went through that process too of not getting the right diagnosis. So sometimes patients like Ms. Sherlin have to wander around, figuratively speaking, for months, sometimes years before they get the right diagnosis. In America, that appears to be between seven and nine years before they get the right diagnosis. The family sees it, it's just that they don't know how to put a name to it. And about 10 years ago, and this 10-year number is important. About 10 years ago, we had no treatments. And then all of a sudden, after 25 years of research, that's how long it takes. After 25 years of research, we got two. One of them is Osteado, Ostado and Ostato XR. And these are both specifically approved by the Food and Drug Administration for not just the treatment of tardive dyskinesia, but also for the treatment of tardive dyskinesia in patients who got tardive from whatever cause. Like Miss Sherlin's case, she doesn't suffer from schizophrenia, she suffers from a mood disorder. Your son suffer from schizophrenia. It doesn't matter where the schizophrenia came from, it also doesn't matter which part of the body it affects you because tardive has a bad habit of affecting you from your pretty much your forehead all the way down to your toes and everything in the middle. So it doesn't matter. Ostedo and Ostedo XR was able to help with that without reducing the medicine. These people often need to continue saving their lives, antipsychotics. So I have mostly really, really good news for you. Non-addicting medication, not habit-forming medication, it mixes with our other um treatment options that we have to use. Haldol? Sure. Clozapine, sure. Any of the other 16 atypicals? Absolutely. What if you no longer are taking an antipsychotic? What if you still have tardip dyskinesia? Guess what? We can use osteoostero XR in that case too. And of course, the goal of treatment. Is to make a medication tolerable. If you can't tolerate a medicine, how do you deal with the medicine, right? US family members know the importance of tolerability. So Ostetoexhaust tolerability profile has also been extremely well articulated. And people can check that out at osteto.com, A-U-S-T-E-D-O.com.

SPEAKER_02 22:25

I will add in here, um, uh you mentioned, Dr. Jane, that our sons don't have it. Actually, my son is being treated for tardia dyskinesia. And um, it was not me that noticed it, he noticed it though. He's the one who noticed it, and then his um psychiatrist also noticed it. And interestingly, we meet with Jim's psychiatrist just like we're meeting today online. We don't meet in person, and still his psychiatrist noticed his uh squinting of the eyes and so forth. And Jim noticed it with his hands. Um, and so he's been treated with that other, as long as you mentioned um Osteta, I'll mention the other drug is in Grizzla, if I'm pronouncing that correctly, and that's the one um that Jim takes. So we're fortunate then apparently to have two. Are there any other drugs or just are those the two you were thinking of too?

SPEAKER_01 23:18

Uh the FDA has only approved two so far. And it's not just the FDA, it is also the American Psychiatric Association's treatment guidelines that recommend those two. So I want to say a couple of things. First of all, congratulations to Jim. What he did is unusual, though. Most patients with TD, I would say many, not most, many, are not aware. Ms. Sherlin was aware. In fact, she was so aware she went banging door to door trying to get the mental health professionals to recognize her condition and to treat it. The other person I really want to commend is Mr. Jim's doctor. That, by the way, is also unusual in that majority of the times when TD does appear, we clinicians don't notice it. That's why I wanted to be on this podcast with you guys because I want to empower you as family members to take responsibility not just for your family members' schizophrenia symptoms, but for side effects, including tardite. We need you often to service our eyes and ears. And I and I thank all of you for helping me be a better clinician to my patients.

SPEAKER_03 24:40

Oh, don't we wish every psychiatrist felt that way? I I have I have had lists of symptoms in the past sent to psychiatrists who said, I don't have time to read that. So, you know, I'm I'm so glad. Sherlund, um, you uh Dr. Jane has shared a bit of your story, but maybe you can add to it. What happened for you when you finally got a diagnosis and got some treatment?

SPEAKER_04 25:08

Well, um, I had a complete personality change. Um, I was staying inside. I wasn't uh before I got the diagnosis, I wasn't interacting with anyone. I was a very outgoing person after I got the diagnosis and was on the treatment plan. Um, it was like a light switch. I had so much hope. And um I can't tell you how important hope is to having your life. Um now I um am willing to share my um mental health journey. I know a lot of people are um you know ashamed of um suffering from bipolar or major depressive disorder, but I feel like because my journey was so difficult, uh, and it was so difficult for me to find um out that I was suffering from TD, that I'm I as my it's my duty to inform other people of what I went through, and perhaps they won't have to wait as long, and their condition doesn't have to get as bad. And uh now I can uh take my medication and follow my treatment plan for TD. I don't have to choose between my mental health medication or um my TD um experience.

SPEAKER_02 26:29

So that's just a joy to and for people who are only listening to this on the podcast, um Sherylans uh is a beautiful woman, and I don't see any evidence now of your the sagging mouth that you talked about. And that's my question then for both of you or either of you, in addition to not thinking tardive dyskinesia was treatable, even after now the last 10 years, Dr. Jane said there has been medication. I still thought that you needed early intervention because if you waited too long, then it wasn't treatable. So, how about that?

SPEAKER_01 27:12

How about that? How about that? This is why your podcast matters because you're not here to rehash the sorrows of yesterday, you're here to motivate about the progress of tomorrow, right? That's that's why you're my that's my guess. What do I know why you do this? But I think that's why you do it is to give people, as Ms. Sherlin said, hope. Osteado is hope in many ways.

SPEAKER_03 27:44

Thank you for that. And that that that's so important and such a wonderful, I just wrote it down as a I'm writing down sound bites as we go. I but I would like to know how long this takes to work. That that's a short question. And the other question is this uh Sherlund, it sounds like you're aware you have bipolar and that is a great gift in a way. When I see my son's hand shaking, he goes, No, I just like to do it. Like he has a lack of insight not only into his schizophrenia, but a lack of insight into his involuntary movements. He's like, I just like I'm just shaking off energy. It's fine. Do you find anosygnosia gets in the way of uh people with schizophrenia and TD being willing to have treatment for it?

SPEAKER_02 28:36

And and while he's answering that, if you could answer my question, which is can you still get treated for tyardigystia after it's taken hold?

SPEAKER_01 28:46

Yeah.

SPEAKER_02 28:46

Or is it just if it's early intervention?

SPEAKER_01 28:49

Yeah, I love those questions. I think we should spend time every week together. Is that okay? You guys got time?

SPEAKER_03 28:56

Okay, not that much time, but yes.

SPEAKER_01 29:00

I'm teasing. I'm teasing.

SPEAKER_03 29:02

No, actually, you're you're you're a great resource because we have a lot of shows coming up. People are asking us.

SPEAKER_01 29:06

No, no, no, I was teasing. I I really was teasing you guys. I know. I know. So here's the really good news with with Osteto and Osteto XR, it doesn't matter how long you've had TD. So we've had great success in treating people who've had it for three years. We've also had great success in treating people who've had it for 50 years. It doesn't matter. That's wonderful news. It is exceptional news because the older we get, really on all honesty, the older we get, we already have increasing amounts of motoric difficulties, balance, strength, gait. That's just part of normal aging. If you have tardive dyskinesia, it can be very impairing. People often have to start using walk, they often fall, they often break their molar teeth, they fracture their teeth because of what Miss Sherlin was talking about when the jaw all of a sudden closes upon you hundreds of times a day, even the strongest teeth can crack. So there is absolute hope. Your question was how quick does it work? Man, it's fast. It's it's sometimes so fast, it's a little bit dizzying. So it's not unusual to see improvement in two weeks, even after the patient has had tardight for three years to 30 years. But the best improvements aren't obviously at two weeks. You really want to give this success. And with Osteto, we have data going out to three years at the moment. Of all treatments available for tardive dyskinesia, the longest, the best long term, the longest data we have with any VMAT2 inhibitor. That's the name of this class of medications, is in fact Osteto. So I hope I answered all your questions. I am giving you not false hope. I don't believe in that. False hope only feels good for a moment or two. After that, it's a curse. I'm giving you real hope. The hope is based on not just research, but peer-reviewed, published, multiple studies. And I, by the way, uh am the author of two studies that I would love to tell you guys about because I think it pertains to you guys. The world's largest survey of people with tardive dyskinesia to understand what is their suffering and their plight. We published, I think I'm remembering it correctly, 2023. And what it showed us is people with tardive suffer not just from their physical symptoms, but psychological and social. Michelle and said she withdrew into herself when she got tardive. We saw that, but we also did a survey of the impact of tardive dyskinesia on the family members. So the three moms here, if your sons, and obviously, Mindy, you already know this, but if your family members developed tardive dyskinesia, how does that impact you? And we thought we would see some impact, you know, you'd be distressed, but what we didn't expect to see is you weren't just distressed. You were more likely to be depressed and anxious and worried, and your work capacity decreased because you were helping take care of your family member. Tardive almost like acts like a cancer in a family, it spreads. It spreads because it now starts affecting the entire ecosystem within which we all human beings live. Now you see, don't you, why I, who don't have a family member with schizophrenia, um, but am fortunate enough to take care of people with schizophrenia, truly believe early identification, early treatment of tardive dyskinesia is a call to duty, not for Dr. Jan, not for Miss Sherland, but for each of you ladies and all of your listeners.

SPEAKER_03 33:14

Uh thank you. I um I want to ask a a couple of things as well, because we have a saying in um in the mental health and the family movement, when mental illness happens, it happens to the whole family. And and it what you say is true. When side effects happen, they happen to the whole family as well. Uh my son has anasygnosia, not aware he has schizophrenia, also not aware that he has a diagnosable side effect that can be helped. I have planted the seed to say to him, you know, if the and and by the way, when he was using substances, it was greatly exacerbated by whatever was in the pot he was smoking. Could be fentanyl, could be anything. My daughter works in the high school area arena, and she says fentanyl side effects are also that clicking of the jaw and the, you know, those movements. So it can be hard to tell. But now that Knockwood, my son is sober, I'm still seeing it not as much. His face is okay at the moment, but his hands. So getting him to take another medication is a difficulty. I'm just going to acknowledge that. Um what I'd like to know are two things. One is are there side effects to these medications that are helping the side effect? And the other thing is, when I was in the American Psychiatric Association going through the exhibit halls, I came across this um T D screening for providers called um uh it's where you can TD screen dot TD screen.ai, where your patient that your patient can, I don't know how it works. Do you know anything about this? It's uh it's it's powered by AI, but it helps patients to um kind of self-diagnose, I guess. Do you know anything about this?

SPEAKER_01 35:17

Wow, three great questions. And if I forget any one of them, please just remind me.

SPEAKER_03 35:21

Oh, so side effects, anastignosia, and td.ai.

SPEAKER_01 35:25

Yeah, let's let's go in reverse if that's okay with you. First of all, AI may be particularly beneficial here because what AI does is it doesn't get distracted, it doesn't make up its mind before you even meet the person, what they should look like, what they should sound like, and it can run in the background. And what it's doing, it's actually capturing video and it's specifically looking at symmetric and asymmetric abnormal movements, and it can alert the clinician and the patient hey, I don't want to make a diagnosis, but I want to caution you. I want to caution you, there's a high risk of X, Y, and Z happening. So it's an emerging tool. We just had a paper published looking at how good is AI at detecting cardiac dyskinesia. And here's interesting news it beat clinicians. But that shouldn't come as a surprise. That shouldn't come as a surprise. Uh, Excel is better at doing spreadsheets than my brain is. It just is. That doesn't mean anything, it just means it's an extra tool. We probably need to wait a little bit longer before we fully, fully embrace it. But I do think the future is already here. Now, your son's inability to or diminished ability to understand what's going on with him psychiatrically, and side effects is actually par for the course, it's actually a core symptom of the disorder in many, many, many people.

SPEAKER_03 36:56

We know that all too well.

SPEAKER_01 36:58

You do, don't you? Yeah, it's a double curse. Psychiatric illnesses are a double curse. One is bad enough, but it's a double curse. That's why I think websites really matter. Because sometimes the way to see yourself is to look at yourself in the mirror and not the mirror hanging on the wall. I'm talking about the mirror of watching another human being. So if your son is someone who will sit down with you and for 10-15 minutes, go to tardiveimpact.com. And you can say, I don't know what your son's name is. Let's just say his name is Call him Ben.

SPEAKER_03 37:35

I call him Ben for public.

SPEAKER_01 37:37

Mr. Ben. If Mr. Ben will sit with you and or if he won't sit with you, but he's someone who's more likely to watch it by himself, it may radically change the way he himself understands what's going on. The second thing to ask Ben is hey, your hands do these things. I know you're not bothered, but how is your ability to write? Or if he, for example, likes playing video games, how is your ability to play video games? How is your ability to cook? How is your ability to do whatever that's important to him? In women, very often I'll ask, how's your ability to put on makeup? How is your ability in men to put a belt on, to put your shoes on? So sometimes I don't focus on the disorder, but the disability from the disorder. And the third thing I say is, look, I know you're hesitant, but let me tell you about its side effects. And some people do have side effects, but austerity is actually surprisingly well tolerated. But we still have side effects, like sometimes there can be sedation. So I tell people, I'll adjust the dose. I'll adjust the dose, I won't hurry you. But the key is I want to help your impairment or whatever that is negatively affected. Can you give me just two months? And I ask for two months, not because Ostedo needs two months, because you know it's called the Walmart principle of psychopharmacology. Whatever you ask for, patients discount by 50%. So I always ask double. If I want them to exercise three times a week, I'll say, can I please have six? And they say, No, I won't do six, I'll do three. I'm like, okay, you win. You win. But guess what? We all won. So I'm a pretty devious psychiatrist, as you can see, but I'm not really. I'm just trying to understand psychology. So I think your son definitely is not a lost cause just because he's not aware. There are specific tools, techniques, motivational interviewing principles, watching certain videos on you know appropriate websites can all change things for the better. And finally, peer counseling helps a lot. So you ladies alerted me, you're part of NAMI. Sometimes if you meet other mothers or fathers with children, uh, like Miss Mindy's son is receiving treatment. Um, perhaps if Mindy and you guys lived closer to each other, your sons could talk to each other, and Mindy's son could gently educate your son about hey man, I didn't want to get treatment too, but by getting treatment, just like Miss Sherlin, X, Y, and Z is improved.

SPEAKER_03 40:24

That's we all we all need community, and we had a little sound glitch when you said, did you say peer support?

SPEAKER_01 40:30

Because I heard support support.

SPEAKER_03 40:33

Okay, so so that statement is you know, peer and hugely. I know my son sobriety is because he's in a sober house and it's providing some community for him. We all community. Uh, we're we're getting close to an hour, and so we only have a few minutes left. I want to give Mimi a chance. I I know it's early days. Hopefully, you're done with your coffee. Do you have any questions that you haven't heard asked? And then just final words from you, Dr. Jane, and from you, Sherilyn.

SPEAKER_00 40:59

Yeah, I really don't. You guys have covered it really well. And again, I don't have personal experience with this, but I'm really glad that we're bringing this out there because um even with Nick, when he was experiencing it, and with him, it was his arms. Um it's hard enough when you're dealing with a serious psychiatric disease, and then you have this additional outward thing that makes you look weird and different and other than um if if there's something that can be done, at least for that, because these people are so othered and so marginalized. I'm happy to see that there's something that can be done.

SPEAKER_03 41:40

Thank you. So, final words. Uh, Sherlin, I'm gonna go to you first. Oh, Mindy, was there anything left unsaid or unasked? We're pretty good.

SPEAKER_02 41:48

Well, I'm just I was gonna say the one thing that worked the best for Jim to get him to notice his own tardiod dystonesia early and ask for and accept care was early in his illness, he was in a psych ward with somebody who was older. And when I say older, it might have been 50 at the time or 60, but um it was somebody that had a severe case, even worse than what Dr. Jane was um demonstrating for those who are watching on YouTube. And that scared the bejeebers out of Jim. He thought that would go along with his illness. He was expecting himself to have that. And um then 25 years later, when he noticed signs, that fear factor helped him to notice that. So, Randy, maybe if Ben um, you know, ever encounters anybody who has a severe case or the video that Dr. Jane is recommending, um, the fear of ending up like that and then demonstrating it to me, it's stigma personified when you have tard dyskinesia. It's it's just you announce you you must have a severe mental illness and you now are getting this uh movement because of the drugs you take. So um I think that's one more tool that that that certainly that was what prompted Jim to notice himself so early. Fear.

SPEAKER_03 43:14

Awesome. Thank you. Sherlund, any final words you would like people to know that we haven't you haven't had a chance to say?

SPEAKER_04 43:20

Yes, I would just uh like to reiterate that um you don't have to choose between uh taking your mental health medications and treating your TD. You can um you can continue your medication uh and you know have your TD treatment plan. So that to me is very helpful. Um it was very helpful. And for those listening, hopefully you will draw encouragement from that as well.

SPEAKER_03 43:51

Thank you so much. And I'm uh hoping that these um the medications that you have mentioned are uh approved by Medicare. I'm hoping they are. Uh so they are.

SPEAKER_02 44:03

They Jim takes uh it's Medicaid that for him, medical assistants in Minnesota that pays.

SPEAKER_03 44:09

Okay, awesome. Dr. Jane, I'll give you the final word here.

SPEAKER_01 44:13

Oh wow. Uh no, you guys are the final word here, but at least for this podcast, I'll I'll take that opportunity. Uh what can I say? I'll start by uh thanking Miss Sherland, actually. Uh, she's a personal hero of mine. Uh it takes courage, it takes real, genuine, hardcore courage to face your mental health disorder and to forgive the medical profession for giving her these side effects. Now we didn't do it intentionally, obviously. It's an unfortunate side effect, but you have been forgiving of us and we appreciate it. The second thing I would say is tardy dyskinesia is uh very unfortunate. It's double trouble. Another way to look at it is one plus one equals three kind of trouble. Early identification, early treatment is I'm going to use the statement mandatory. Why is it mandatory? It's mandatory because it can lead to an escalating cycle of uh all kinds of problems. People with hardive are less likely to take their medications that they really need because they're now afraid of medications and therefore become more psychotic. They're more likely to tell others, don't take your medications because of look what happened. So it's like a um social contagion. Um, it frightens people. These people get into more trouble at work in their romantic relationships, even with the legal system, they have more medical problems. I don't have any good news about cardiac dyskinesia, but the good news is identification and treatment really helps. And I'm pretty proud to say Ostedo and Ostedo XR are one of the tools we can use, but we do need the clinicians like myself and patients like Miss Sherlin and you guys as parents to become more aware of it. So thank you for having me. And I think what we've done today is a genuine important service to your listening world, and I'm grateful for the opportunity. So thank you.

SPEAKER_03 46:36

Thank you so much for tuning into this episode of Schizophrenia Three Moms in the Trenches. You can help out the podcast and help others by sharing the podcast and by subscribing wherever you get your podcasts andor on YouTube. And remember, you can reach us at mindygryling.com, randyk.com, or MiriamHeifenfeldman.com