Shelly is a real patient living with tardive dyskinesia. In this podcast, Shelly tells Dr Nasrallah how tardive dyskinesia has shaped her relationships with others.
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This promotional educational program is sponsored and co-developed by Neurocrine Biosciences and is not certified for continuing medical education. The speakers are presenting on behalf of and are paid consultants for Neurocrine Biosciences. The information presented is consistent with FDA guidelines.
Narrator: Shelly is a real patient living with tardive dyskinesia. In this podcast, Shelly tells Dr Henry Nasrallah how tardive dyskinesia has shaped her relationships with others. In turn, Dr Nasrallah shares some anecdotes from his own clinical experience managing patients with TD.
Shelly: Hi, I’m Shelly and I am living with tardive dyskinesia. I experience a lot of uncontrollable movements. It’s like my legs and fingers have a mind of their own. My hands also move all over the place. My husband thinks I might have the strongest hands of anyone he knows because I’m constantly moving them. My tongue movements impact how I speak and can make me slur my words and make me sound drunk.
Dr Nasrallah: This is consistent actually with patients I have seen in my practice. One patient in particular is a 48-year-old woman who has been living with bipolar disorder for 24 years. She was treated with several antipsychotics during her manic and depressive episodes. She is highly functioning and works in a law firm as a paralegal. She developed TD 5 years ago, and it first included oro-buccal and lingual movements. Then her fingers started moving, too. The mouth movements embarrassed her when she was talking with clients in the office, and the finger movements interfered with her use of the computer keyboard, which is a vital part of her work. How often do you experience your TD symptoms, Shelly?
Shelly: Well, sometimes they come and go intermittently and sometimes stressful situations will make them worse.
Dr Nasrallah: Well, this makes me think of a patient of mine, a 45-year-old man diagnosed with schizoaffective disorder and TD with moderate symptoms. He pointed out that his abnormal movements increased in severity whenever he noticed someone staring at him. This prompted him to stop going out in public unless he absolutely had to, and he described spending most of his time alone. Well, not only can everyday stress worsen your movements by the way, but those uncontrollable movements themselves can be stressful. How do you feel about the movements you described?
Shelly: A lot of the time I don’t even realize I am exhibiting them. One time, my church did a Christmas video, and I was singing a song in the front row. They sent a copy of the video to everyone at our church and when I watched it, I couldn’t believe my eyes. I was flapping my arms all over the place. It was so embarrassing. Also, I feel like people can recognize that I have a mental illness by my movements. Like I have a neon sign posted on me. Also, I find myself socializing less due to my TD, and I tend to isolate and that has impacted my relationships.
Dr Nasrallah: Well, it sounds like TD has seriously impacted your life physically and emotionally. You mentioned your husband Matt has noticed your hand movements. Can you talk a bit more about that? Have other people also noticed your movements?
Shelly: Well at first, I wasn’t really so aware of my tardive dyskinesia symptoms. But as I got into a regular routine—you know, taking my daughter to school, meeting with her teachers, going to the grocery store—I started to notice that people were treating me differently, staring at me, because of my movements. I felt embarrassed.
Dr Nasrallah: Can you give me an example?
Shelly: One particular memory stands out. I was at a parent–teacher conference with my husband and at the time, my tardive dyskinesia movements were really bad. My hands were swinging all over the place and I could feel the teachers staring at me. Both Matt and I tried to explain that my movements were due to a medical condition, but they didn’t seem to believe me and my feelings were really hurt. Situations like these are really hard to deal with. You are working so hard to be a better person and deal with your mental health issues, and strangers who don’t understand are judging you on your appearance for things beyond your control.
Dr Nasrallah: Yes, sometimes people can be judgmental and can lack empathy. For instance, I treated a 39-year-old woman who has treatment-resistant depression. She developed TD after being treated with adjunctive antipsychotic drugs for several years, and she has described how before she was diagnosed and treated for TD, her own family pointed it out. They would not take her to outings with them because they were embarrassed by her movements. The patient was depressed and had low self-esteem. She also felt isolated when she was excluded from family gatherings. So how do your unwanted movements impact your daily routine?
Shelly: Well, on the days that my symptoms are exacerbated, I tend to stay at home. I don’t even answer the phone because my voice is so slurred from my tongue movements, and it’s hard for people to understand me. I also suffer from symptoms at night. I move my legs somewhat constantly when I get into bed, which is hard for my husband since he has a bad back, so often my kicking winds up with one of us sleeping on the couch.
Dr Nasrallah: This must be very frustrating to you and your husband. What is the most frustrating aspect of your symptoms?
Shelly: Well, I hate that my symptoms sometimes put an unintentional strain on my relationship with my husband and my daughter. You know, my daughter growing up—she was very embarrassed by my symptoms. And, you know, it created a distance between them and me. The symptoms can be so disruptive and embarrassing.
Dr Nasrallah: Thanks so much for your candid description of your tardive dyskinesia symptoms, Shelly. Suffering from tardive dyskinesia has adversely affected your personal and social life. Do you have any other thoughts you want to share with us?
Shelly: Thank you, I do. I would like to see more doctors talk to patients about the options for managing tardive dyskinesia. I feel that some of the doctors I have seen over the years didn’t really understand the stigma that living with tardive dyskinesia creates and how seriously it impacts our lives. I think it is important for doctors to open themselves up to what their patients are telling them.
Dr Nasrallah: This is consistent actually with patients I have seen in my practice. One patient in particular is a 48-year-old woman who has been living with bipolar disorder for 24 years. She was treated with several antipsychotics during her manic and depressive episodes. She is highly functioning and works in a law firm as a paralegal. She developed TD 5 years ago, and it first included oro-buccal and lingual movements. Then her fingers started moving, too. The mouth movements embarrassed her when she was talking with clients in the office, and the finger movements interfered with her use of the computer keyboard, which is a vital part of her work. How often do you experience your TD symptoms, Shelly?
Shelly: Well, sometimes they come and go intermittently and sometimes stressful situations will make them worse.
Dr Nasrallah: Well, this makes me think of a patient of mine, a 45-year-old man diagnosed with schizoaffective disorder and TD with moderate symptoms. He pointed out that his abnormal movements increased in severity whenever he noticed someone staring at him. This prompted him to stop going out in public unless he absolutely had to, and he described spending most of his time alone. Well, not only can everyday stress worsen your movements by the way, but those uncontrollable movements themselves can be stressful. How do you feel about the movements you described?
Shelly: A lot of the time I don’t even realize I am exhibiting them. One time, my church did a Christmas video, and I was singing a song in the front row. They sent a copy of the video to everyone at our church and when I watched it, I couldn’t believe my eyes. I was flapping my arms all over the place. It was so embarrassing. Also, I feel like people can recognize that I have a mental illness by my movements. Like I have a neon sign posted on me. Also, I find myself socializing less due to my TD, and I tend to isolate and that has impacted my relationships.
Dr Nasrallah: Well, it sounds like TD has seriously impacted your life physically and emotionally. You mentioned your husband Matt has noticed your hand movements. Can you talk a bit more about that? Have other people also noticed your movements?
Shelly: Well at first, I wasn’t really so aware of my tardive dyskinesia symptoms. But as I got into a regular routine—you know, taking my daughter to school, meeting with her teachers, going to the grocery store—I started to notice that people were treating me differently, staring at me, because of my movements. I felt embarrassed.
Dr Nasrallah: Can you give me an example?
Shelly: One particular memory stands out. I was at a parent–teacher conference with my husband and at the time, my tardive dyskinesia movements were really bad. My hands were swinging all over the place and I could feel the teachers staring at me. Both Matt and I tried to explain that my movements were due to a medical condition, but they didn’t seem to believe me and my feelings were really hurt. Situations like these are really hard to deal with. You are working so hard to be a better person and deal with your mental health issues, and strangers who don’t understand are judging you on your appearance for things beyond your control.
Dr Nasrallah: Yes, sometimes people can be judgmental and can lack empathy. For instance, I treated a 39-year-old woman who has treatment-resistant depression. She developed TD after being treated with adjunctive antipsychotic drugs for several years, and she has described how before she was diagnosed and treated for TD, her own family pointed it out. They would not take her to outings with them because they were embarrassed by her movements. The patient was depressed and had low self-esteem. She also felt isolated when she was excluded from family gatherings. So how do your unwanted movements impact your daily routine?
Shelly: Well, on the days that my symptoms are exacerbated, I tend to stay at home. I don’t even answer the phone because my voice is so slurred from my tongue movements, and it’s hard for people to understand me. I also suffer from symptoms at night. I move my legs somewhat constantly when I get into bed, which is hard for my husband since he has a bad back, so often my kicking winds up with one of us sleeping on the couch.
Dr Nasrallah: This must be very frustrating to you and your husband. What is the most frustrating aspect of your symptoms?
Shelly: Well, I hate that my symptoms sometimes put an unintentional strain on my relationship with my husband and my daughter. You know, my daughter growing up—she was very embarrassed by my symptoms. And, you know, it created a distance between them and me. The symptoms can be so disruptive and embarrassing.
Dr Nasrallah: Thanks so much for your candid description of your tardive dyskinesia symptoms, Shelly. Suffering from tardive dyskinesia has adversely affected your personal and social life. Do you have any other thoughts you want to share with us?
Shelly: Thank you, I do. I would like to see more doctors talk to patients about the options for managing tardive dyskinesia. I feel that some of the doctors I have seen over the years didn’t really understand the stigma that living with tardive dyskinesia creates and how seriously it impacts our lives. I think it is important for doctors to open themselves up to what their patients are telling them.
Thanks for tuning in. There are more resources on tardive dyskinesia to explore, which have been created with your busy schedule in mind.