A Caregiver’s Perspective – Managing A Loved One’s Mental Health and Tardive Dyskinesia

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This article was sponsored and developed by Neurocrine Biosciences Inc. Forrest and Moira were compensated by Neurocrine Biosciences Inc. to share their story.

Whether you’re caring for a loved one’s physical or mental state, this November, we commemorate caregivers across the country for providing well-needed care for their families during National Family Caregivers Month.

Approximately 39.8 million caregivers provide care to loved ones. Those who require caregiving vary in age, so the duties and responsibilities caregivers must undertake may span from buying groceries and cooking, to helping manage medications and attending medical appointments. National Family Caregivers Month is an important time to honor those who provide these crucial services.

Forrest, hailing from Long Island, New York is a proud husband, father, and care partner to his wife, Moira. Forrest prefers to refer to himself as a care partner, rather than a caregiver because he and Moira are navigating her mental health journey together. He is an ordained as a Roman Catholic priest and a Protestant minister, as well a social worker.

He met Moira through an online dating service in New York City. Soon after, the couple married and have a family with Moira’s two children from a previous marriage.

A few years into their marriage, Moira’s battle with major depressive disorder and bipolar disorder resurfaced. “This depression was very different than anything I’d experienced in the past. I had no appetite and was in terrible psychological and physical pain,” said Moira.

After consulting with her psychiatrist, Moira was prescribed antipsychotics to treat her depression and bipolar disorder. Over two years later, she started experiencing involuntary movements in her mouth. “The movements were so extreme that people thought I was chomping on gum,” said Moira. “It wasn’t even subtle looking.” People even commented on Moira's movements while she was leading service at her church.

When Forrest first noticed Moira’s symptoms, he was heartbroken. “I’ll never forget the day in our study when she asked me to look in her mouth because she felt phantom objects with her tongue – and of course, there was nothing there,” Forrest said. Forrest couldn’t bring himself to suggest her involuntary movements may be part of another health condition. Forrest’s suspicions were confirmed after Moira visited her neurologist, who conducted a full assessment and later diagnosed her with tardive dyskinesia (TD).

TD is a movement disorder characterized by uncontrollable, abnormal, and repetitive movements of the face, torso, and/or other body parts, which may be disruptive and negatively impact those living with the condition. TD is associated with taking certain kinds of mental health medicines (antipsychotics) that help control dopamine receptors in the brain. Approximately 600,000 people in the U.S. may be affected by this condition.

Moira’s TD diagnosis changed their relationship as she began to withdraw further and experienced self-esteem issues. “I spent a lot of time talking to Moira to help her cope,” said Forrest. “It was a difficult time because she previously had a job that required a public presence and was having trouble working.”

As Moira’s care partner, Forrest accompanied his wife to appointments and took on a historian role. He recorded dates, events, and medication dosages ahead of each appointment. “She needed a lot of support then, as her work was in jeopardy and her depression was getting worse,” said Forrest.

Forrest’s role also extends beyond caring for Moira’s physical symptoms of TD. He also provides emotional and mental support. “There would be moments where I woke up and the movements would start. Forrest was there and helped me continue with life. He kept pushing me to do the next thing,” said Moira. “Without Forrest, I think I would have been hospitalized for my depression.”

In 2017, Moira’s psychiatrist prescribed INGREZZA® (valbenazine) capsules for her TD, the only once-daily treatment for adults with TD. INGREZZA 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. The most common side effect is sleepiness (somnolence).

She began taking INGREZZA, and Forrest noticed a reduction in the severity of her involuntary movements caused by TD a month later. Both Forrest and Moira noticed the involuntary movements were also less severe. Individual results may vary. Some taking INGREZZA begin to notice a reduction in movements at 2 weeks with clinical results at 6 weeks.

Please see Full Important Safety Information below and Prescribing Information

“It was a bleak situation with Moira,” said Forrest. “TD had an emotional impact on Moira, and I could see its outward impact on her work and family life. Now that Moira is on treatment with INGREZZA, her TD symptoms are much more manageable.”

To learn more about TD and INGREZZA, talk to your doctor or visit INGREZZA.com for more safety information.

Download the doctor discussion guide on Ingrezza.com to help talk to your doctor about your TD movements.

This article was sponsored and developed by Neurocrine Biosciences Inc. Forrest and Moira were compensated by Neurocrine Biosciences Inc. to share their story.

See Important Safety Information Below

Important Information

Approved Use

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:

  • fast, slow, or irregular heartbeat
  • shortness of breath
  • dizziness or fainting

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.

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