Did you know that rocking back and forth isn’t a symptom of schizophrenia — it’s a side effect of the medication used for treatment. It’s called tardive dyskinesia, and it’s a common result of long-term use of antipsychotic medications.
The percentage of patients who will experience tardive dyskinesia ranges from 3% to as high as 68% and can have a negative impact on quality of life.
Dee Linde,who is a support group leader with the Dystonia Medical Research Foundation, joins and shares her incredible journey with tardive dystonia — a progressed form of tardive dyskinesia.
Host Rachel Star Withers, a diagnosed schizophrenic, and cohost Gabe Howard discuss the effects of tardive dyskinesia, personal stories, and ways to manage it in this episode of Inside Schizophrenia.
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Dee Linde, MA, is a U.S. navy veteran and worked as a licensed marriage and family therapist for 15 years. Linde was diagnosed with tardive dystonia in 1997 and had deep brain stimulation (DBS) surgery in 2000. In 2002 Linde founded the DBSforDystonia Yahoo group to offer online peer support and information to those on the DBS journey. She now moderates the Dystonia & Deep Brain Stimulation Facebook group. Linde also leads the Portland, Oregon & Southwest Washington Dystonia Support Group. She has served on the Department of Defense’s Peer Reviewed Medical Research Program’s consumer reviewer panel for dystonia research applications and has testified before the Senate Defense Appropriations Subcommittee urging federal legislators to keep dystonia on the list of conditions included in the Department of Defense’s exclusive research program. Linde is a member of the Dystonia Medical Research Foundation’s Community Leadership Council, a frequent speaker at DMRF events, and a member of the Dystonia Dialogue newsletter’s editorial board.
Rachel Star Withers creates videos documenting her schizophrenia, ways to manage and let others like her know they are not alone and can still live an amazing life. She has written Lil Broken Star: Understanding Schizophrenia for Kids and a tool for schizophrenics, To See in the Dark: Hallucination and Delusion Journal. Fun Fact: She has wrestled alligators.
To learn more about Rachel, please visit her website, RachelStarLive.com.
Gabe Howard is an award-winning writer and speaker who lives with bipolar disorder. He is the author of the popular book, “Mental Illness is an Asshole and other Observations,” available from Amazon; signed copies are also available directly from the author.
Gabe makes his home in the suburbs of Columbus, Ohio. He lives with his supportive wife, Kendall, and a Miniature Schnauzer dog that he never wanted, but now can’t imagine life without. To learn more about Gabe, please visit his website, gabehoward.com.
Producer’s Note: Please be mindful that this transcript has been computer generated and therefore may contain inaccuracies and grammar errors. Thank you.
Announcer: You’re listening to Inside Schizophrenia. Hosted by Rachel Star Withers, an advocate who lives openly with Schizophrenia. We’re talking to experts about all aspects of life with this condition. Welcome to the show!
Rachel Star Withers: Welcome to Inside Schizophrenia, a Healthline Media podcast. I’m your host, Rachel Star Withers, here with my incredible co-host, Gabe Howard.
Gabe Howard: Hey, Rachel, I am super excited to be here. And today we’re going to be talking about well, you know, I don’t know how to pronounce this word. How do you pronounce it?
Rachel Star Withers: That is up for debate, Gabe, because as I looked across the Internet, there’s a few different ways people pronounce this: tardive dyskinesia, tardive dyskinesia, tardive dyskinesia. Today we’re mainly going to be saying tardive dyskinesia.
Gabe Howard: Or TD for short. It reminds me of tinnitus versus tinnitus, which is the ringing in your ears. I can’t get anybody to agree on which one is right either. It seems that both are. This might be a potato/potato thing, a tomato/tomato.
Rachel Star Withers: Tardive dyskinesia is a side effect from antipsychotic medication that involves uncontrolled abnormal muscle movements. People with schizophrenia are especially vulnerable to developing tardive dyskinesia due to the fact that one of the main treatments for schizophrenia is antipsychotic medications. The percentage of patients who will experience tardive dyskinesia ranges from 3% all the way up to 68%, which is one of the biggest gaps, I think ever. If someone says, Oh, you’re going to have like maybe a 3% chance of something, you’re like, Oh, that’s nothing. You’re going to have almost a 70% chance. That’s a lot. That is a big jump. And tardive dyskinesia can have a very negative impact on the quality of life.
Gabe Howard: It’s a side effect of antipsychotic medications. I really feel the need to really hit hard that people believe that the rocking back and forth, the shaking, the tongue darting are symptoms of schizophrenia. And it’s much like saying that a symptom of cancer is losing your hair. Everybody understands that losing your hair with cancer is a result of the cancer treatment. But I really think that many, many people in society, including a really alarming number of people living with schizophrenia, also believe that it’s a symptom of schizophrenia.
Rachel Star Withers: Today, we’re going to talk about what exactly tardive dyskinesia is, how it’s being treated and ways to manage this medication side effect that in many cases can be permanent. And joining us today is Dee Linde with the Dystonia Medical Research Foundation, who is a support group leader. And she is going to share an absolutely incredible journey that she has had with tardive dystonia. And if you just thought, Rachael, I thought this was about tardive dyskinesia, we’ll get into the name specifics throughout this episode.
Gabe Howard: Rachel, drop some knowledge on us. What is the medical definition of tardive dyskinesia?
Rachel Star Withers: Tardive or tardive means delayed, So a delay in something and then dyskinesia or dyskinesia means uncontrollable abnormal movements. They’re involuntary muscle movements, usually in the lower face and the extremities. It can progress to like other areas of the bodies. It can be a temporary or a chronic condition, and it’s associated with long-term use of antipsychotics. So long term, like it’s a little a little misleading on what they mean by long term. Now here, long-term can mean a month to years.
Gabe Howard: And of course, people with schizophrenia are treated long-term.
Rachel Star Withers: Yes.
Gabe Howard: To be med compliant, to do what you’re told, to listen to your doctor, to take your medications as prescribed, you’re going to be on these medications for the rest of your life. If the rest of your life is not described as long-term, I don’t know what is. What are the breakdown of percentages? I understand Yale studied this. What did they learn?
Rachel Star Withers: It could be very confusing because it depends on the age of the person. So if you are over 65, they consider long-term to be a month. The older you are, the quicker you can develop tardive dyskinesia from antipsychotics. Younger people have much lower percentages, so when they do these studies, a lot of times they kind of take the median of everyone in the group. But when they actually break down and do studies based on age groups, they find out that certain people do develop TD quicker and are more likely to get it. So that’s like the big reason the percentages are all over the board. The very common thing you hear quoted is that if you are on atypical antipsychotics, there’s a 20% chance. When it comes to antipsychotics, there’s two types. There’s first-generation typical ones, and then second-generation atypical antipsychotics
Gabe Howard: Is there a certain point where you’re safe or? Meaning if you’ve been on the medication and stable for three years, you won’t get tardive dyskinesia? Or the longer you’re on it, do your odds increase?
Rachel Star Withers: So, unfortunately with TD, the longer you’re on antipsychotics, the more likely it is that you will at some point develop tardive dyskinesia. So if you’ve only been on antipsychotics for five years, about 32% of people develop it. It jumps to 57% when you’ve been on it for 15 years. And then if you’ve been on antipsychotics for 25 years, that’s where we’re hitting 68%. In fact, they’re kind of starting to assume now that if you were on antipsychotics for an entire lifetime, you’re most likely going to have TD at some point. It may or may not be permanent, but you’ll probably develop it at some point to some degree.
Gabe Howard: You know, Rachel, I just want to point this out because so many people are just like, well, why didn’t you just take your pills as prescribed? What was the problem? Why weren’t you med compliant? What’s the issue? And then we see things like this and you’re like, maybe that. Maybe that was the issue. Again, I don’t want anybody to hear, Hey, don’t take your meds. Gabe said it was a bad, no, I’m just I’m saying that this would give anybody pause. I mean, a medication that you need to take for the rest of your life that’s starting to look like it has a 100% chance of this terrifying side effect. I think any reasonable person would be like, well now, wait a minute.
Rachel Star Withers: What’s more distressing is that for people with schizophrenia, not only are we the main ones affected by this side effect, if you have schizophrenia and you have a lot of negative symptoms they found, you are also more likely to get TD and negative symptoms, meaning depression, not feeling emotions. They’ve also found out that people who have undergone electroconvulsive therapy, as many people with schizophrenia have, are more likely to develop TD, which I, of course, also fall into that category. And I never heard that before. I was like, Oh, wow, maybe that maybe that’s why I got TD so easily. So there’s a lot of cards stacked against people with schizophrenia when it comes to developing tardive.
Gabe Howard: Now, Rachel, what does TD look like for you?
Rachel Star Withers: When I was first diagnosed back in my early twenties to my mid-twenties, I was put on a lot of antipsychotics, so I was on all of them. I’m talking first-gen, second-gen. I mean, they ran me through every single one before I could be approved for ECT. And a few years later, even though I wasn’t still on most of those medications, I was sitting in my bed one day and I noticed my tongue was like moving around like a snake. That’s the only way I can describe it. And I wasn’t controlling it. And I remember thinking that was really odd. And then I started shaking and having these uncontrollable tremors. And I went to the doctor and the doctor thought it was odd and he googled it, which was distressing to me to be sitting there in a doctor’s office and they’re actively telling me they’re Googling in it. I actually went to another doctor who off the cuff was just like, Oh yeah, you have tardive dyskinesia, but he just said it like matter of factly and I’m like, Oh, OK. Didn’t do anything for me. He just told me that’s what it was. Just everyone kind of treated it like it was no big deal. It has gotten worse over the years. One thing that I’ve learned is as they change up, my medications, sometimes it does get worse. Sometimes it kind of backs off. The more stressed out I get, the worse it becomes. Now, Gabe, you’ve been around me a lot. Have you ever noticed me shaking or having any issues with my movements?
Gabe Howard: I have, of course, noticed some symptomology that I think, oh, hey, I bet that’s TD, but I’m very, very used to you. And it’s not as exaggerated as it is in pop culture. Sometimes I notice, like a tongue dart and I think, well, maybe you’ve just got like, salt on your lips, right?
Gabe Howard: I mean, you’re just, not every road leads back to schizophrenia when I’m hanging out with Rachel. But yes, I have absolutely noticed it. But I do wonder if other people would notice it. And if they did notice it, if they would think it was a symptom of schizophrenia or they think it was odd, or they would think that you’re just a quirky kind of person. I’m not sure that other people would notice it and think it was anything other than, Hey, Rachel’s kind of bouncy.
Rachel Star Withers: I agree with that. I think the symptom of it that people notice most that raises red flags is my hand shaking. My hands kind of tremble and shake a lot. I notice it most when I’m like at a store or restaurant someplace and I have to like put my credit card in the little slot, you know, where you just stick it in for a second. I have the hardest time sticking my credit card in that slot, and I’m always shaking. Once was I was in at the mall and I walk into one of these upscale sunglasses hops and I’m looking at sunglasses and my hands just were going crazy. And the attendant comes over and stands really close to me. And I kind of got the feeling, I’m like, she must think I’m nervous because I’m about to steal something. So I went ahead and I dressed it. I was like, I’m not trying to steal these glasses. I just shake. It’s just this thing I do. And the girl literally put her hand on my shoulder and she goes, Wow, my dad does the same thing and he won’t leave the house now because of his shaking. He’s so embarrassed by it. And we ended up talking for like 20 minutes. And I shared with her some of the things that helped me. And I don’t know if her dad had TD exactly why he was shaking, but it was just crazy because here, right away I thought this girl was going to accuse me of something and we ended up having this really great conversation. I even gave her my card. TD And just shaking in general, the tremors. It really can like make you very self-conscious.
Gabe Howard: It’s interesting because you mentioned a tremor. I have a tremor because of my medications. It’s not nearly as pronounced as yours. But if I saw you having a tremor, I wouldn’t think PTD, I wouldn’t think schizophrenia, I wouldn’t think symptom of an antipsychotic medication. I would just think, oh, that woman has a tremor. I might think Parkinson’s, I might think. I would just think so many things before schizophrenia, but I don’t think that the average person would immediately assume TD based on seeing your hand shake, they would think so many other things first.
Rachel Star Withers: Yes. And there are different levels of TD. Some people may be very just mild. They might not even notice it for many years. A lot of times TD goes undetected and people just don’t realize what it is because it doesn’t affect their lives that much. But yes, it can get quite severe to it can become like rocking. The biggest thing to understand what tardive dyskinesia is, it’s the muscles are moving on their own. They’re moving a lot. A lot of times it might manifest in like leg shaking and foot tapping and just a constant movement of the fingers. And that has been something that I’ve noticed. If you ever sit with me, you’ll probably be annoyed that you’ll notice my legs don’t stop moving, and you’ll notice I’m always just kind of shaking. But again, that’s something that most people wouldn’t think, Oh, that’s schizophrenia. Oh, that’s tardive dyskinesia. They probably just think Rachel is really bouncy. Now, the tongue thing that does happen a lot and I have found when I’m concentrating on things, it happens worse, especially when I’m at the gym. My tongue is constantly hanging out in the gym and I hate it because I’ll like look over, you know, the gym has mirrors on the wall and I’ll glance at the wall and be like, I’ll just see my tongue hanging out of my mouth. And I’m like, okay. So probably everyone thinks I’m either flirting with them terribly, like some kind of creepy flirting going on or who knows what?
Gabe Howard: Rachel. I’m your friend and I, I love you. But especially, like, if there’s silence, if we’re sitting across from each other, if we’re watching a movie or whatever, it really is kind of constant. And I can see where it does kind of get concerning. It’s like, why is this happening? Do you find that this is a problem in public where people are just like they become fearful or scared or annoyed?
Rachel Star Withers: I don’t know. I mean, maybe they have been fearful, scared or annoyed. I’ve never had anyone mention it to me. I have caught people looking at me and me realizing you would think you. Rachel, you can tell your tongue’s hanging out of your mouth, but you don’t. You don’t notice it. It usually takes me having to look in a mirror where I realize that I’m doing it. Thankfully, once I notice it, I tend to stop. Gabe, now. Now you’re a little older, so you might not know who Megan Thee stallion is.
Gabe Howard: I know who Megan Thee Stallion is.
Rachel Star Withers: Oh, OK, OK. I’m sorry. See, I said the.
Gabe Howard: It’s not even the stallion.
Rachel Star Withers: I know.
Gabe Howard: It’s Megan Thee stallion. Wow. Wow.
Rachel Star Withers: I felt like I had to over pronunciate for you. I’m sorry.
Gabe Howard: Ugh.
Rachel Star Withers: It’s funny because I love her. She does this thing where she’s sticking out her tongue a lot. She goes a lot. It’s part of her songs and stuff and it’s adorable and cute. So it’s great because now I feel that if people see me do it, they just think like, I’m a big rap fan. You know,
Gabe Howard: Right. Right.
Rachel Star Withers: I’m just over here just like, I’ll look over and be like, it goes from me being awkward to them just being like, okay, wow. Rachel is. Rachel is on it. She’s cool.
Gabe Howard: She must just be rapping, right?
Rachel Star Withers: Yeah. Yeah. Just turned into it an ah, ah, and they’re like, okay, cool.
Gabe Howard: Yeah. You know, in the seventies, Gene Simmons from KISS might have helped with that
Rachel Star Withers: Yes.
Gabe Howard: As well. I just bring that up because the tongue thing is represented in pop culture and it’s almost always represented to be sexual. So I just wondered if if you ever had any experiences with people seeing you, darting your tongue, etc., and got the wrong idea. Have you personally internally thought to yourself, I just have to leave because I can’t stop this behavior?
Rachel Star Withers: I have become incredibly embarrassed and left exercise classes before due to it. Now, that was years ago. Not anymore. Now I’m just absolutely over and what people think as far as it because am I. It happens so much. I would leave every exercise class. If you’re listening to all this and you’re thinking, Rachel, how in the world does anti-psychotics, which is like dealing with your psychosis, dealing with delusions? Why would that affect my muscles? And the easiest explanation I can go kind of goes back to what antipsychotics used to be called. So when they first popped up in like the fifties, they were actually called Neuroleptics. Now, when you hear that word, that kind of makes a little bit more sense. That makes you think kind of okay. That messes with all parts of your brain. But we hear antipsychotics. We tend to just think of imaginary issues. Whereas neuroleptic, I think kind of makes you think, oh, wow, this is a serious medication. The name change did come out in the sixties, when they realized that these types of medications really helped people with schizophrenia. I’ll be honest, Gabe, as I learned that fact, I kind of was like, I wish they would have kept the name neuroleptic.
Gabe Howard: I would go in another direction. Me personally, and I live with bipolar disorder with psychotic features. Antipsychotic makes it sound like, okay, when he takes these pills, he’s not going to, you know, hack up a boarding school. Right. I get this very horror film vibe and me being, you know, a psycho. Right.
Rachel Star Withers: Yeah. Mm-hmm.
Gabe Howard: So I wish they were called neuroleptic because when I tell people that I’m on antipsychotics, they’re like, so if you weren’t on those pills, you’d kill me. On one hand, I want to be. I want to be upset and I want to be annoyed and I want to be hurt by them thinking that. But why? Even I, when somebody does something, I think, Oh, my God, that guy’s psycho. Even I do it. It’s just such a part of our culture.
Rachel Star Withers: Yes.
Gabe Howard: So as annoying as that piece of stigma and discrimination is, it’s perfectly understandable. When did they become aware that antipsychotics had this side effect? Rachel, is this a recent development? Is this, is this new?
Rachel Star Withers: The first time they started noticing what would later be called tardive dyskinesia was in the 1950s. Clinicians actually started noticing as they were giving this out to different psych patients and stuff, that they were starting to have tremors, they were having muscle problems. So it was first documented in the fifties. There were nine studies done in the sixties that schizophrenics treated with antipsychotics, that 10% of them to 40% seem to get this muscle problem. So this is in the sixties. They’re already realizing up to 40% of schizophrenia patients. We’re getting these muscle problems now and that like kind of bothers me that even back then, they’re starting to track that this is a big issue. And yet no one really jumped in to do anything about it. When it comes to PTD, there’s also some issues as far as when we look back at those percentages of, well, how come there say it’s 3% to 68% whenever they do these big studies? A lot of times they’re just doing a study on a certain drug. But me having schizophrenia, I’m on a lot of drugs at once, usually multiple antidepressants and antipsychotics. They create for you this kind of cocktail. Very few studies focus on how being on multiple at the same time affects your chances of getting PTD. When you’re on multiple, it does up your chances for PTD and it makes it harder to figure out which one is causing it.
Gabe Howard: I want to touch real quick on the cocktail, because, of course, you are right. How do the drugs interact with each other? How do they interact with the individual person? And this is also why people who are diagnosed with schizophrenia, bipolar disorder, really any illness that involves a cocktail, they can’t just get one drug and be fine. Right? They can’t get one prescription and be fine. These prescriptions have to be prescribed one at a time so that a doctor can get a handle on how it’s impacting your body, the side effects, and figure out what to add and what not to add. You’re not prescribed the cocktail on day one. The cocktail builds up over six, 12, 18, 24 months. This is one of the reasons that it’s so hard to stabilize people with schizophrenia because you generally have to give the meds one or two at a time and then work around the margins to really zero it in. Rachel, I want to ask you, you, of course, are on a cocktail of medication. Just to be clear, has there ever been a study on your exact cocktail?
Rachel Star Withers: I’m going to say absolutely not.
Gabe Howard: Of course not. Of course not. They’re
Rachel Star Withers: And then the fact that my cocktail gets tweaked at least every six months.
Gabe Howard: So even if there was a study, which there’s not, they’re not doing racial studies.
Rachel Star Withers: No. No, there’s not.
Gabe Howard: This does make it difficult for people living with schizophrenia and other mental health issues because we only have this basic understanding of how the medications work to begin with, and then we start to layer it up. How do the medications interact with each other? How do they interact with the patient? The way that the medicines interact with your body at the age of 20 is going to be very different than 30, 40, 50, 60, 70, 80.
Rachel Star Withers: The other thing I learned in researching this episode is I’ve always assumed what I had was tardive dyskinesia. That’s the term I always heard. I didn’t realize that there’s actually a whole group of these muscle issues. Tardive dyskinesia is what you hear most with antipsychotics, but another one is tardive dystonia, which our guests coming up we’ll talk a little bit about. There’s also tardive akathisia, tardive Tourette’s ism, which is a version of Tourette Syndrome, tardive trimmer, which I talked about. And honestly, I assumed the tremor was part of tardive dyskinesia. And then certain of the symptoms of tardive dystonia I’ve always assumed were dyskinesia. And sometimes the lines between what’s what can be very blurred.
Gabe Howard: Okay. Rachel So obviously having people with schizophrenia stop taking their medication because of this side effect, it’s, that sounds like a really, really bad idea. Right. It’s out of the frying pan and into the fire. But is there a treatment? Are you just stuck with this? Is this just life with schizophrenia?
Rachel Star Withers: Right away. Once they diagnose you with tardive dyskinesia or they see that you’re starting to have muscle movement problems. Yes, the main go-to is stop the medication causing it or lower the dosage. However, if you have schizophrenia and you’re being treated with antipsychotics, you’ve probably learned that that’s not always an option. Many times you need a certain medication to survive. That certain cocktail might be the only thing that makes it so you can, you know, be a part of society. You could kind of be faced between a rock and a hard place. Me personally, that’s where I’ve been multiple times where they would be like, Oh yeah, we should lower this one. But the minute they lower it, I spiral downward very quickly there. They’re doing studies. One of the studies that they found is that vitamin E has been known to slow the progression of TD, not stop it, but people taking different vitamin E supplements in addition to antipsychotics. They’re also doing a lot of studies into vitamin B6 and ginkgo biloba. They’re still studying this, so please don’t run out and buy all these vitamins because Rachel said so. I’m just telling you the studies that they’re trying to figure out what can help slow down TD something I didn’t realize botox injections that is being used for a lot of the facial twitching not to stop the TD, but if you’ve ever understood how Botox works, you know, it kind of freezes the muscles in your face. So if you are experiencing the side effect with a lot of like twitching of the facial muscles, that is an option which I didn’t realize. That’s something for me because my face does twitch a little bit that in the future I have an excuse for getting Botox. If I can be like, No, no, it was a medical necessity.
Gabe Howard: I love that. You sound like my my my father. My father had chronic nosebleeds and had to have rhinoplasty. And he wanted to make sure that everybody knew that he was having rhinoplasty because of the nosebleeds, not because of the ugly bump on his nose that’s now gone. Now, he was being that was very, very genuine.
Rachel Star Withers: [Laughter]
Gabe Howard: But listen, I know my father, he hated that bump. He is super happy that bump is gone. But he’s also super happy that he can say it’s not because of vanity, it’s because of chronic nosebleeds. Yeah,
Rachel Star Withers: I like it.
Gabe Howard: It’s a twofer, buddy.
Rachel Star Withers: I like it. I like it. Now there are finally and this is a recent development in the past few years, some medications on the market now specifically to treat tardive dyskinesia. Gabe, I’ll be honest, I ran into the room when I heard a commercial for tardive dyskinesia that was playing on the TV. My mom was watching TV and just I heard the word and I literally shot in there to see this commercial. And I was like, Wow, I got so excited. That didn’t mean I was going to run out and try that drug, but it blew my mind that, you know, here in the commercial, they have an older male just talking about it, saying like, Oh, I can now play with my grandkids and all this. And it made me feel so seen because it is something that people haven’t brought up and to hear a commercial for it. I’m not saying that these medications will fix everybody, but I do think it is a new option and it’s exciting to know that there are new ways of dealing with it. And I like the fact that the commercial, the guy was very normal who had it. It wasn’t like the person was in a mental institution shaking and they’re like, Finally I got free or something. It was just this normal guy and it was a sweet commercial. So, yes, there are some that are on the market now that you can look into. Another option that they have is called deep brain stimulation. And our guests coming up actually had a version of that. A thing that all of us can do is exercise physical therapy. If the TD is affecting arms, legs, hand movements, doing exercises can really help with that and especially flexibility.
Gabe Howard: Rachel, we’ve sort of approached this whole episode from the vantage point of you have TD. But how do you know? I mean, there’s obviously the symptoms. The involuntary muscle movement is kind of a pretty big hint, but a doctor generally has some sort of, I don’t know, test. Is there a blood test for this?
Rachel Star Withers: Diagnosing TD is based off a doctor’s observation. Now what they do have is the abnormal involuntary movement scale or the Ames examination, and it’s a very short examination where you do these little physical movements, like touching your fingers together, things like that. Now that is to not tell whether you have TD, but to judge the severity of TD and they actually suggest doing this abnormal involuntary movement scale before starting it. Antipsychotic, during taking the antipsychotic and afterwards once you’ve been taken off of one. This has been around since the seventies. Gabe and I have never had a doctor do the AIMS examination with me. Now, that’s not to say I haven’t had some great doctors, but I did find this a little annoying that no doctor has ever done this examination with me. To my medical professionals out there, this needs to be something that is taken more serious. TD can kind of sneak up on you like it did me. It started with just shaking and it just progressed. I don’t really know when it started because I didn’t notice it until it had escalated to, like I said, my tongue was doing all this really crazy stuff and I was dropping things. I couldn’t hold my phone. I was having trouble writing. That’s at what point I went to the doctor, which it kind of progressed to the point that I was having trouble holding a pen or pencil.
Gabe Howard: You said that the AIMS test was developed in the 1970s. Once again, that was over 50 years ago. Td has been around for a long time. It’s been researched for a long time. It’s been understood for a long time. Yet many people have never heard of it. And when I say people, I mean people with schizophrenia. Wow. Wow. There’s just so much data to support that this has been well known and that people living with schizophrenia just haven’t heard of it for a number of reasons that we probably talked about in the stigma episode of Inside Schizophrenia.
Rachel Star Withers: Yes.
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Gabe Howard: Rachel, you got to interview a great guest. Dee Linde is incredible. Let’s just go ahead and play that right now.
Rachel Star Withers: We’re speaking today with Dee Linde, who is a volunteer with the DMRF, the Dystonia Medical Research Foundation. She is also the leader of the Portland, Oregon and Southwest Washington support groups. She’s a veteran with the U.S. Navy and a retired marriage and family therapist. Thank you so much for speaking with us today, Dee.
Dee Linde: You’re so welcome, Rachel. I’m glad to be here. Thank you for having me.
Rachel Star Withers: You actually have a really interesting background. You’re a veteran with the Navy, so thank you very much for serving. You are also a marriage and family therapist for 15 years. And, on top of that, you actually served on the Department of Defense Peer Reviewed Medical Research Program. So you have done so much when it comes to mental health.
Dee Linde: Yes. Correct.
Rachel Star Withers: Tell us about your background and your personal journey with tardive dystonia.
Dee Linde: Well, back in the early nineties, I was being treated for depression. And the doctor that was treating me at one point along there, she misdiagnosed me and mis-medicated me. And she had me on all kinds of antidepressants and antipsychotic medications. And when she’d give me medication, if I had a side effect, she would just give me another medication to counteract their side effects. And it just kept snowballing to the point where I was on like ten different medications at one time, but the antipsychotics, I was only on them for like six weeks to three months at the most. But the damage was already done. And in 1995, I started showing signs of tardive dyskinesia. And eventually, by 1997, it progressed into full-blown tardive dystonia.
Rachel Star Withers: So you’ve served on the Department of Defense Peer Reviewed Medical Research Program, and you’ve testified before the Senate Defense Appropriations Appropriate Subcommittee urging the federal legislators to keep dystonia included as part of the DOD research program. Tell us from your inside knowledge, how does the government see the topic of dystonia?
Dee Linde: Well, the government initially didn’t even see dystonia. Nobody even knew what dystonia was until we started going to D.C. for Advocacy Day. We go every year. Many of the senators, many people in Congress are now familiar with dystonia. At least they know the word. And that’s a start right there. And now that we know that the military people are coming back from all these wars and whatever with traumatic brain injuries, which can lead to dystonia, they’re much more aware of dystonia and aware of what it is and how it affects a person’s life. So when we go in with from that angle, they’re very much aware and very supportive of the foundation’s efforts to get funding for research. And that’s why every year we try to get on that DOD list. It’s very competitive.
Rachel Star Withers: What were your first symptoms with tardive dyskinesia?
Dee Linde: Well, the very first symptom was what’s in the mental health field is called pill rolling, where your thumb and index finger do this little rubbing thing. Like you’re rolling a pill or something between your fingers. And then the next symptom that I had was I was so restless I couldn’t sit still, and I was constantly moving. Eventually, it progressed to dystonia, which included all the muscle spasms and the cramping. And I was pretty much nonfunctional. For several years I lived on the floor because I couldn’t sit up in a chair and I couldn’t feed myself or button a blouse or zip anything. And I ate, lived and slept on the floor. And in order to eat, I would put my plate on the floor and just scoop the food from the plate into my mouth because I couldn’t get, my hand was shaking so much. I couldn’t get the food from the plate up to my mouth. So I just had to scoop it in. And those were terrible, terrible, dark times for me.
Rachel Star Withers: What did you find that helped you deal with a lot of this?
Dee Linde: Having been a therapist, I kind of tried to do a little therapy on myself, and I went through all those stages of grief that they talk about, the denial, anger, betrayal, depression and acceptance, and how I accepted the fact that this is not going to go away. I used to journal a lot and writing in my journal has always been very helpful for me. So, and I would write to the dystonia and I would say, okay, look, we both have to live in this body, so we have to figure out a way that we’re going to live together in harmony because you’re not going away and I’m not going away. So we have to figure this out. Eventually, I just came to accept that this is what I have to live with now.
Rachel Star Withers: At some point, you had brain stimulation. Did that help?
Dee Linde: Yes. Yes. At first, I was given all the medications that they give to treat dystonia, but none of them were working for me. So I was referred to a neurosurgeon who was doing this brand new surgery called Deep Brain Stimulation Surgery. And I was a good candidate for that. And I was actually the ninth person in this country to get DBS for dystonia
Rachel Star Withers: Wow.
Dee Linde: In 2000. And it has worked incredibly well for me. I mean, it gave me back my life. And I just recently celebrated my 22nd anniversary with deep brain stimulation surgery.
Rachel Star Withers: Was it a one-time thing or did you have to continue to have it done?
Dee Linde: Well, once they implant the leads into the brain and then hook you up to your little battery stimulator like a pacemaker, then you go for several months for programing. And I was lucky because they found my optimum settings within six months after the surgery and I have had the same settings for 22 years.
Rachel Star Withers: Honestly, that’s incredible because I’ve spoken with lots of different people who have schizophrenia and other very serious mental disorders who have tardive dyskinesia and dystonia. I’ve never actually spoken with anyone who’s had this type of brain stimulation surgery.
Dee Linde: Well, it was really fascinating for me. And when I had the surgery, you’re awake for part of it. So in the O.R., they put this little microphone, I guess, down into the brain so you can actually hear your brain cells firing. I could hear all this noise. It sounds like a bunch of static, you know. I asked the doctor, I said, is all that noise coming from my brain? And he said, Yes, it is. And I said, Oh, whoa. So I thought, well, I’m going to try something. So I moved my little finger and the static just went crazy. It just went wild. And he said, Dee, stop moving. And I thought, I wonder what will happen if I move my legs? So I started moving my leg and oh my God, the noise. It was just deafening in this O.R. Because, in the O.R., it’s kind of like surround sound. The sound of the cells firing determines whether the doctor has the lead in the correct spot in your brain or not. I was doing all these little movements and just getting a kick out of it all, and I don’t know if that helped the surgeon or not, but it helped me.
Rachel Star Withers: Could you feel anything during this?
Dee Linde: No, because the brain doesn’t feel anything. And the parts when they were drilling into my skull, I was asleep for that part. So, no, I didn’t feel anything.
Rachel Star Withers: Since the surgery, what symptoms do you still have of dystonia?
Dee Linde: I still have, my head leans forward because my neck pulls and I have some jaw tensing that I do all the time. It’s not teeth grinding, it’s just my jaw clenches. And they’re are about the only symptoms that I still have left.
Rachel Star Withers: How did you become involved with support groups for dystonia?
Dee Linde: Well, having been a therapist, I kind of knew the value of support groups. And here in Portland at that time, there was not a support group that I knew of. I contacted the foundation, the Dystonia Medical Research Foundation, and asked about starting a support group.
Rachel Star Withers: What I found fascinating in your bio is that you actually also started an online support group.
Dee Linde: I did. After I had the DBS surgery. I was looking for support because I had no support because I didn’t know any other dystonia patients that had DBS. So I went online and found a group on Yahoo! Yahoo! Groups, but it was all about Parkinson’s disease. They couldn’t really answer my questions because my questions were specific to dystonia. So I thought, why don’t I just start another group on Yahoo! And I said, Well, I’m the only one here so far, but if I start a group, they will come. And they did come. And eventually, I had had over 700 members that were in my DBS for dystonia group on Yahoo!
Rachel Star Withers: Wow.
Dee Linde: And then Yahoo! Disbanded their groups. So DMRF was trying to find another platform for our group and it ended up on Facebook. That’s where we are and that’s where we are now. And it’s going pretty well. You know, in the beginning, I decided that people were so kind to me, when I first got dystonia. I was on the DMRF’s bulletin board and online support there and people were very kind and I thought, Well, I just want to keep that kind of going and pay it forward. So that’s why I started all these groups, and that’s why I really got involved with the Dystonia Medical Research Foundation.
Rachel Star Withers: How can a support group help someone who is experiencing different types of TD?
Dee Linde: For one thing, you’re with other people who have kind of the same symptoms. You’re with like people, you know? And that helps a lot to know that you’re not the only one who is suffering from this thing, that you’re not crazy, that your symptoms are not all in your head. It’s not imaginary. It’s a very real thing. And you don’t have to deal with it alone.
Rachel Star Withers: Is an online support group a good option for people who might be a little hesitant about going in-person to a support group?
Dee Linde: Yes, actually, it is. It is because a lot of people that have dystonia aren’t able to drive or they’re not able to travel because it’s too painful to sit in the car. It can be in the comfort of your own home. You can be laying in bed if you want. You can be in your pajamas, whatever you want. It’s really, it really has been beneficial.
Rachel Star Withers: Tell us what is a typical support group session like? If I was going to one for the first time, what should I expect?
Dee Linde: You could expect people to greet you and make you feel welcome and comfortable. And at the support groups, we have different formats. Like sometimes we’ll have a guest speaker will come and talk about things like living with the chronic illness, coping skills, how to be assertive or how not to feel excluded from things, or how not to exclude yourself from activities or from life just because you have tardive dystonia or tardive dyskinesia. And then sometimes we’ll just have a meet and greet where people come and they talk about all the things that they’re doing to help their symptoms and what doctors are seeing and what their doctor does and how they’re feeling today and that kind of thing. And I also want to say that family members and friends are also welcome to come to our roots.
Dee Linde: You don’t have to talk if you don’t want to. You don’t have to do anything you don’t want to do. You can just sit there and observe. Whatever you want to do, whatever makes you feel comfortable. They’re very informal. It’s not like a therapy session. It’s more like just a group of people getting together to compare symptoms and compare treatments and get information.
Rachel Star Withers: How can our listeners find out more about support groups for dystonia?
Dee Linde: You can go to Dystonia-Foundation.org and look up support groups in your state or just send it an email to info@Dystonia-Foundation.org.
Rachel Star Withers: Thank you so much for speaking with us today, Dee. The work you’re doing is helping people like me and so many other people that have disorders. So thank you very much from all of us.
Dee Linde: You’re welcome, Rachel. And it’s really been a pleasure. Thank you so much.
Gabe Howard: Thank you so much, Rachel, for doing that interview. As I was listening to it, I wondered about your emotions honestly. How did it feel hearing about a really, really severe case, knowing that you live with as your friend? I was kind of worried about you during the interview process.
Rachel Star Withers: It shook me a little bit. Gabe and I actually emailed Dee right after we had the interview with her, and I thanked her because I said, as you were talking, as you were describing your symptoms, I realized I had a lot of those symptoms. And it did make me kind of think like, Oh, wow, I need to watch my TD more carefully. She talked about the jaw, the clenching, which I’ve had now for quite a few years. I really didn’t think of it as being related to antipsychotics. In the past three years now I’ve actually dealt with this really bad locking up of the right side of like my shoulders, this like cringing pain that keeps happening. And I go to massage therapist, I went to a physical, I went to all these different people. No one has helped me with it. And that made me think when she was talking, I was like, I wonder if this is related to the antipsychotics, these muscle problems that I keep having with the right side. It was eye-opening because here she’s talking and I’m thinking, wait, why do I identify so much with what she’s saying? And it really shows you like how important support groups can be, that you can be around other people and they might be able to help you realize different things that you’re going through. And also they can share ways to deal with those things. Ways to cope, ways to manage. Just being able to connect. And she made me feel again. She made me feel kind of like that commercial did, seen, you know, like, oh, wow, here’s someone talking about something that I’m going through. And it was kind of nice.
Gabe Howard: We have long been proponents of peer support and peer-led support groups and finding other people who have led a similar life to yours so that you can vent. You can cry.
Rachel Star Withers: Yeah.
Gabe Howard: You can hug. But also so you can trade skills, right? So you
Rachel Star Withers: Yes.
Gabe Howard: Can learn coping skills. And I know you learned a lot of coping skills from this episode, as you just mentioned, but also just from being a mental health advocate, a schizophrenia advocate and somebody who lives with TD. Can you share some of those coping skills with our audience?
Rachel Star Withers: Yes. So over the years, I’ve had to kind of learn how to deal with my TD. It gets a lot worse when I’m stressed out. I have learned that and managing stress is like I hate when people tell me to do that because I’m like, I don’t know how. I don’t know what else to do here. I feel like that’s all I do is manage stress, and I guess I’m doing a terrible job at it. But for me, that’s one of the biggest things, is when I start to realize that I am shaking, is that I probably need to take a step back in my life from different things. You know, we talk about it with schizophrenia. Support networks are very important. And those that you have in your support group, you need to speak up about the tardive dyskinesia, any kind of issues like that that you’re having let people around, you know, you’re having issues. My dad is great when it comes to food because of my shaking, I try to avoid using knives because I have cut myself so many times. It’s very hard for me to cut things. And he’s real quick to cut my food up for me.
Rachel Star Withers: I know nobody wants to be told to exercise, but the stretching for me really has helped with a lot of my muscle movements. Now, when it comes to actual activities adapting, you’re going to have a hard time finding tools and resources for tardive dyskinesia. It’s a lot easier if you look up tools for Parkinson’s, for tremors, different products that are specially marketed to the elderly, who have a hard time holding things. And when you start looking for stuff like that, there’s lots of tools for eating, drinking, cooking, writing, you know, pens and pencils that are, like, thick, like big, padded ones that are easier to hold. Like the hardest time using a normal pen or pencil. I just can’t hold them. Well, they have these little sponges that you can actually slide on utensils and different kind of things like that that make eating so much easier. Other options is switching to electronics when it comes to shaving, brushing your teeth and Gabe, I feel like that that’s where the world is at anyway. Like everybody has an electric toothbrush now or a sonic toothbrush. And everybody wants to make their lives easier.
Rachel Star Withers: Today’s episode is not to scare away people from taking their medications, and it’s not to demonize antipsychotics for many of us who live with schizophrenia. Antipsychotics are a necessity for us to be able to function in society. And unfortunately, tardive dyskinesia could be a necessary evil for a lot of us. You may not develop tardive dyskinesia, but you want to be on the lookout for it. The good news is that there are ways to cope with it day to day, and there are new treatments coming out to help manage tardive dyskinesia. Thank you so much for listening to this episode of Inside Schizophrenia, a Healthline media podcast. Please like share, subscribe and rate our podcast and we’ll see you next time here on Inside Schizophrenia.
Announcer: You’ve been listening to Inside Schizophrenia, a podcast from Psych Central and Healthline Media. Previous episodes can be found at PsychCentral.com/IS or on your favorite podcast player. Your host, Rachel Star Withers, can be found online at RachelStarLive.com. Co-host Gabe Howard can be found online at gabehoward.com. Thank you and we’ll see you next time.