A Family’s Perspective on Tardive Dyskinesia (TD)
Moira and Forrest were compensated by Neurocrine Biosciences, Inc. to share their story.
Moira, a minister, and her husband Forrest, talk about the impact that her Tardive Dyskinesia (TD) movements had on their family, and the crucial role that family and partners can play during TD diagnosis and treatment. Taking certain mental health medicines (antipsychotics) for a while can cause abnormal dopamine signaling in the brain, which can lead to uncontrollable movements called TD.
The Onset of Moira’s Tardive Dyskinesia
Moira: Everything was going well for us. I had my depression under control. I was working as a minister, living with my husband, Forrest, and our two young adult kids. Suddenly, I began to experience uncontrollable movements in my mouth and lips, which I now know was TD. It felt like I had bits of metal in my mouth, and my tongue was working to dislodge them. I’d also smack my lips together. It looked like I was chewing gum or working bits of food out of my teeth, but there was nothing in my mouth. Being able to comfortably and confidently speak publicly and talk and listen to people is a big part of my job. When the movements began, I became much less confident speaking publicly. In fact, my contract as a minister was not renewed after my symptoms became apparent because the movements really impacted my ability to confidently speak and interact. I was worried, and my family was worried for me. I even began to isolate myself from my family.
Forrest: As a family, we all struggled with Moira. Our kids were really worried about their mom’s health because of the TD movements. As time went on and the uncontrolled movements continued, Moira started describing herself as feeling “ugly.” She got so self-conscious that she began closing herself off — even to us. And that was hurtful to our family.
Stress seemed to worsen Moira’s movements and her feelings about them, so while I was working hard to keep everything calm, the pressure of “walking on eggshells” made the situation more stressful over time. Moira’s employment being affected by the movements also added to the situation by creating financial stress.
Diagnosis, Treatment With INGREZZA and Improvement
Moira: I had a somewhat indirect path to diagnosis, which some other patients may experience. Because the movements were in my mouth, I talked to my dentist at first, who confirmed that I did not have a dental issue. I then went to my psychiatrist who ordered a full neurological work-up with a movement disorder neurologist. After the tests, the neurologists diagnosed me with TD and my psychiatrist concurred. My psychiatrist prescribed an INGREZZA® (valbenazine) capsules treatment regimen that I have been on ever since. INGREZZA has lessened my movements while allowing me to stay on my mental health medicines.
INGREZZA® (valbenazine) capsules is a prescription medicine used to treat adults with movements in the face, tongue, or other body parts that cannot be controlled (tardive dyskinesia). My psychiatrist told me that the most common side effect is sleepiness.
Please see Important Safety Information below
This is just my experience, others may have a different experience with INGREZZA.
Forrest: As Moira’s husband and care partner, I was relieved — and so were the kids — when her TD was diagnosed, and she started treatment for it. Moira’s TD movements are no longer as noticeable; we consider them well-managed.
What’s most important is that Moira is confident again due to the reduction in her TD movements in her face and mouth and is no longer isolating herself. When Moira was struggling with the movements, she was self-conscious about how others perceived her and how they reacted to the movements.
Now that Moira is being treated with INGREZZA and having a reduction in movements, people are back to responding to her — not her movements. She’s back to working as a pastor, and we’re very happy to see her again in a role that’s meaningful to her.
The Importance of Care Partners and What You Can Do
Forrest: Family and care partners can play such an important role as a patient seeks answers and treatment for TD. Besides being a loving, unconditionally supportive partner, one way to help your loved one is to embrace your role as their advocate. With your partner’s permission, you can accompany them to their doctor’s office and help paint a fuller picture of your partner’s movements. A verbal history, Doctor Discussion Guide, notes, and even short videos of their movements can all be helpful. Your role is important.
Moira: Being open and honest with my psychiatrist about how my TD symptoms were affecting me and our family was important in arriving at my INGREZZA treatment plan. Many patients have an understandable tendency to want to minimize how upsetting and disruptive TD movements are but not discussing the full extent of your symptoms won’t help you find a treatment plan.
My family and I experienced emotional and financial stress because I was unable to work due to self-consciousness caused by my undiagnosed TD. I’m grateful now that my movements are more under control thanks to INGREZZA. And reduced TD movements can give hope to TD patients, families and care partners who struggle alongside them.
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INGREZZA® (valbenazine) capsules is a prescription medicine used to treat adults with movements in the face, tongue, or other body parts that cannot be controlled (tardive dyskinesia).
It is not known if INGREZZA is safe and effective in children.
IMPORTANT SAFETY INFORMATION
Do not take INGREZZA if you:
- are allergic to valbenazine, or any of the ingredients in INGREZZA.
INGREZZA may cause serious side effects, including:
- Sleepiness (somnolence). Do not drive, operate heavy machinery, or do other dangerous activities until you know how INGREZZA affects you.
- Heart rhythm problems (QT prolongation). INGREZZA may cause a heart problem known as QT prolongation.
Symptoms of QT prolongation may include:
Tell your healthcare provider right away if you have a change in your
heartbeat (a fast or irregular heartbeat), or if you faint.
- Abnormal movements (Parkinson-like). Symptoms include: shaking, body stiffness, trouble moving or walking, or keeping your balance.
Before taking INGREZZA, tell your healthcare provider about all of your medical conditions including if you: have liver or heart problems, are pregnant or plan to become pregnant, or are breastfeeding or plan to breastfeed.
Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.
The most common side effect of INGREZZA is sleepiness (somnolence). Other side effects include changes in balance (balance problems, dizziness) or an increased risk of falls, headache, feelings of restlessness, dry mouth, constipation, and blurred vision.
These are not all of the possible side effects of INGREZZA. Call your doctor for medical advice about side effects. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit MedWatch at www.fda.gov/medwatch or call 1-800-FDA-1088.
Please see accompanying INGREZZA full Product Information
The following promotional article is sponsored by Neurocrine Biosciences