Movement Disorders and the Family Caregiver
Gary Barg: Dr. Jain, I know what the dictionary tells me about the two words, "tardive" and "dyskinesia." One, tardive, having symptoms that develop slowly or appear long after inceptions; and two, dyskinesia, difficulty or abnormality in performing voluntary muscular movements. Those are particularly benign descriptions. But when you put those two words together, they tend to create a profoundly troubling disorder for our loved ones.
So, I'm wondering if you can tell us about tardive dyskinesia.
Rakesh Jain: Tardive dyskinesia (TD) can be a complicated and disabling condition. It often appears after an individual has been exposed to an antipsychotic medication that blocks dopamine receptors in the brain. These types of medications are commonly prescribed to treat schizophrenia, bipolar disorder and depression. Over time in some individuals, abnormal, involuntary conditions appear that can affect multiple parts of their body. We call this TD.
Gary Barg: What are the symptoms?
Rakesh Jain: In most people, TD appears slowly, but then can gather speed. Individuals can, perhaps, first notice a change in how they blink. They might find themselves blinking excessively or that their tongue, lips, jaws, and muscles of facial expression can have a life of their own and start moving about at times and places that it makes no sense. Sometimes anxiety or being self-aware can worsen it.
Gary Barg: Other than as a consequence to taking antipsychotic medications, are there other ways that TD manifests?
Rakesh Jain: That's primarily the cause. There are a number of medications we use – both in and outside of psychiatry– that are wonderful. They can help people with their suffering and even save their lives. But when they block the dopamine receptor, particularly the D2 receptor, then they carry that risk. And the risk gradually increases over time. If someone is taking these medications, it's important that their care provider discusses the risk of TD with them, as well as monitor for the development of TD.
Gary Barg: How do doctors recognize TD? How soon can they recognize it and what do they do to provide support to their patients and their patients' loved ones?
Rakesh Jain: Even before the process of detection begins, informed consent between the clinician and the patient and perhaps, even the family support system should commence. People should know that this can happen and watch for signs of TD. If something does happen that appears to be abnormal in terms of movement difficulties, they can alert their healthcare provider.
There are instruments that are recommended, one is called the AIMS, that mental health professionals use to assess for abnormal movement – even before it occurs. But that, in itself, is not enough. At every visit, the clinician, as well as the patient and caregiver should report any abnormalities.
If TD appears, then the clinician, patient and support system, should talk about treatment. We're very fortunate to have a couple of medication treatment options available that can minimize the symptoms.
Gary Barg: Would you recommend clinicians having a conversation with their patient, if they think they see signs of TD?
Rakesh Jain: Oh, absolutely, and in addition to the conversation, an appropriate differential diagnosis should be conducted and history taken. Perhaps the AIMS examination should be done and then perform an evaluation for impact as a result of TD. For example, "Ms. Smith, Mr. Jones, do you fall, bite your tongue or avoid social contact? What other things happen to you?" And once that is finished, we can create a treatment plan to specifically address TD.
Gary Barg: How have you seen TD impact the lives of your patients' loved ones, as well as their relationship with one another?
Rakesh Jain: TD is an impactful condition for patients and caregivers. That's why conversations about identification and treatment are so very important. When people are depressed or experiencing psychosis, the family members suffer right along with them. A nurse, with TD had complaints filed against her by a patient’s family because they thought she was making "ugly faces" at them.
Gary Barg: What advice do you have for caregivers of TD?
Rakesh Jain: It's a team effort. If you're a caregiver of a TD patient, you are as important a member of this team as anybody else. The very first thing to do, is get educated about TD. The second thing, would be to team up with the patient and healthcare provider as soon as possible. I would not recommend you wait till the next appointment.
Matt and Shelly - Matt is the Caregiver for Shelly who is living with TD
Gary Barg: Matt and Shelly, it is a real pleasure to talk with you as a family affected by TD. Matt, what happened when you first noticed the symptoms?
Matt: We were just so happy to have Shelly functional that we didn't notice the twitching for quite some time. The slurring was the thing people noticed. There were incidents with teachers and doctors where they assumed that she was drunk. I really had to stand up and say that is not the case.
Gary Barg: Shelly, what is living with TD like for you?
Shelly: When my speech is really bad, I don’t even answer the phone, I sound like someone who has had too many. My voice is so bad, I’m actually inarticulate. You can’t understand me at all, so my go to thing is to shut up totally.
Gary Barg: Shelly, how have you been able to cope with your own condition and be able to take care of your daughter?
Shelly: It is hard. One time, Matt and I were at a parent/teacher meeting. My symptoms were bad. I was swinging my hands and my voice was slurred. We explained that I had something called TD. There was one teacher that didn't seem to be buying it. She kept shooting me angry, judgmental looks, because TD is not well-known, people make assumptions on what they're seeing. Unfortunately, it can seem like someone is on drugs or alcohol. I was judged for something completely beyond my control. Therefore, nothing I said on behalf of my daughter was taken seriously or without that judgment coloring their assumption.
Gary Barg: Matt, how does this make you feel? What do you do?
Matt: I can get kind of snarky and use that to our advantage. But often, I need to be there so Shelly doesn't get stressed and trigger symptoms.
Gary Barg: Snarky is a great tool in the caregiver toolkit. I love it.
Shelly: Yeah. Matt is my defender. Whereas, I get hurt, he kind of gets angry. But, a lot of times that's to my benefit.
Gary Barg: It seems like you guys operate as a team. How has Matt's role been helpful to you as you see the symptoms come on?
Shelly: Both Matt and my daughter have ways of non-verbally letting me know that I'm exhibiting symptoms. For instance, my daughter will catch and hold my hand. My husband will put his hands on my shoulders, so I'll quit rocking. They have developed ways to tell me without hurting my feelings.
After so many years together, we have developed a kind of mental telepathy. I always say that when one of us falls down, the other one stands up. I will just step back. He'll take over.
Gary Barg: What do you see as the best way to deal with the TD when it shows up?
Matt: Humor.
Shelly: Humor, yes, my husband is our in-house comedian. Matt has a way sometimes of pointing out what I did to where I'm mortified. I'm just, "Oh no." He'll just make me laugh at myself and If I'm laughing at myself, it doesn't hurt so much.
For instance, I went to a church social where we did a video of A Christmas Carol that we sent out to every member in the church. We sent them an e-mail. Matt and Fia were not with me. They put me in the front row. We were singing Joy to the World. When the link came out, Matt said I looked like a chicken with my head cut off trying to achieve flight. My hands were just flopping away. I was mortified.
But well, Matt, you tell him what you said…
Matt: I was just, "Honey, I love you, but that is the funniest thing."
Shelly: He made me laugh about it.
Gary Barg: Matt, I see how wonderful you are as a caregiver, a spouse and a father. But, what do you do to care for you?
Matt: I try to sleep.
Gary Barg: Shelly. What would your advice be to other people living with TD?
Shelly: I would have to say find an advocate, especially in health care and at doctor's appointments.
Gary Barg: Talk to me about your difficulties with interactions with law enforcement.
Shelly: That can be very stressful. Your TD can come on, then you're not able to communicate the problems you're having because of your symptoms. It has been very helpful to have Matt there, not only as an advocate, but as a witness.
This is something that happened to me. I changed lanes without signaling and was pulled over. I immediately got stressed and my voice got slurred. I'm trying to tell them I have something called TD, but the name went right out of my mind. I was like, "I have something. I have something." They're like, "How much alcohol have you had to drink?" I was like, "None, look at my Dr. Pepper I'm holding." It took me about half an hour to convince them that I was completely sober.
Matt: You had them call me.
Shelly: They had to call Matt to verify. Then, they made him come and pick me up, because they'd never heard of anything called tardive dyskinesia, they felt in some way that it hindered my ability to drive.
Gary Barg: Matt, what would your advice be to other caregivers?
Matt: Be ready to laugh at yourself. It takes away the ability for others or situations to hurt you, if you are aware of the comedy of the situation.
Shelly: Don't take yourself so seriously, I think, is what Matt has helped me to achieve.
Sponsored by Neurocrine Biosciences, Inc.
CP-TD-US-0476, 10/19