The first step when caring for someone with HD chorea is caring for yourself1

Huntington’s disease (HD) chorea care partners are looking after at least two people—the affected individual and themselves. Learn about some steps you can take to make looking after yourself a daily priority.

Why self-care is so important

You may feel like it’s easier to focus only on your care partner responsibilities, or you may feel like you lack time or energy to devote to yourself. However, looking after your own needs, along with those of the person for whom you care, may have practical benefits.

  • Balance: You may find it easier to balance the demands of your day, giving you more time to do enjoyable things, such as taking a walk or having coffee with a friend.2
  • Health: Your physical health may improve. This may better position you to attend to daily tasks, and allow you to be more present for the person with HD chorea in your life.1,3
  • Motivation: With time devoted to self-care, you may find it easier to process the challenges of caring for someone with HD. This can help with motivation and confidence.3

Starting small1,2

The time, commitment, and personal toll of caring for someone with HD chorea is considerable. To begin, consider an approach to self-care that reserves a few minutes each day for simple activities such as:

Taking a walk around the block

Taking a walk around the block

A form of light exercise such as yoga

A form of light exercise such as yoga

Listening to a favorite song

Listening to a favorite song

Reading one chapter of a book

Reading one chapter of a book

Meditating

Meditating

Working on a crossword puzzle or playing a mobile game

Working on a crossword puzzle or playing a mobile game

These tasks may seem small, but they may be all you need for the time being. Brief moments can become longer moments over time.

Opening up to others and asking for help

Opening up to others about caring for someone with HD chorea may help you manage your emotions, expand your support system, and release feelings of tension or stress.2-4 It may also give you the chance to clear up myths or stigmas about HD chorea so that people don’t get the wrong impression of you or the person you care for.

When choosing to share experiences about HD chorea, work with the person you care for, if possible, to think through why you want to share this personal information, and how and when to proceed. Consider the following as you prepare:

  • In general, talking with others may help you sort through your feelings and put things in perspective.3,4
  • Opening up to others may help them understand HD chorea and why caring for someone with HD takes so much of your time and energy.2
  • Keeping others up-to-date on the latest information can help them provide the best support.
  • Asking for support can be hard, but being your own advocate is just as important as being there for a loved one with HD chorea.1
  • If a friend or family member offers to help, say yes. Dedicate this newfound time to doing something for yourself.
  • Accept that not everyone may be able or willing to help you.

Additional Support

Ask a member of your healthcare team if they can direct you to a local caregiver support group. You can also connect with fellow caregivers online, and learn more about Huntington’s disease and the unique challenges of caring for those affected, by visiting:

Join Teva’s Facebook community dedicated to supporting those affected by Huntington’s Disease (HD).

JOIN HONESTLY HD

Receive Updates

Sign up to have information about AUSTEDO® tablets and HD chorea emailed to you.

You are about to leave this site

You are about to leave AUSTEDO.com and enter a website operated by a third party. Teva is not responsible for and does not control the content contained on this third-party website linked to AUSTEDO.com.

Are you a healthcare professional?

The information on this site is intended for healthcare professionals in the United States. Are you a healthcare professional in the United States?

Approved Uses

AUSTEDO® is a prescription medicine that is used to treat:

  • the involuntary movements (chorea) of Huntington’s disease. AUSTEDO® does not cure the cause of the involuntary movements, and it does not treat other symptoms of Huntington’s disease, such as problems with thinking or emotions.
  • movements in the face, tongue, or other body parts that cannot be controlled (tardive dyskinesia).

It is not known if AUSTEDO® is safe and effective in children.

Important Safety Information

AUSTEDO® can cause serious side effects in people with Huntington’s disease, including: depression, suicidal thoughts, or suicidal actions.
Do not start taking AUSTEDO® if you are depressed (have untreated depression or depression that is not well controlled by medicine) or have suicidal thoughts. Pay close attention to any changes, especially sudden changes, in mood, behaviors, thoughts or feelings. This is especially important when AUSTEDO® is started and when the dose is changed. Call your healthcare provider right away if you become depressed, have unusual changes in mood or behavior, or have thoughts of suicide.

Do not take AUSTEDO® if you:

  • have Huntington’s disease and are depressed or have thoughts of suicide.
  • have liver problems.
  • are taking a monoamine oxidase inhibitor (MAOI) medicine. Do not take an MAOI within 14 days after you stop taking AUSTEDO®. Do not start AUSTEDO® if you stopped taking an MAOI in the last 14 days. Ask your healthcare provider or pharmacist if you are not sure.
  • are taking reserpine. Do not take medicines that contain reserpine (such as Serpalan® and Renese®-R) with AUSTEDO®. If your healthcare provider plans to switch you from taking reserpine to AUSTEDO®, you must wait at least 20 days after your last dose of reserpine before you start taking AUSTEDO®.
  • are taking tetrabenazine (Xenazine®). If your healthcare provider plans to switch you from tetrabenazine (Xenazine®) to AUSTEDO®, take your first dose of AUSTEDO® on the day after your last dose of tetrabenazine (Xenazine®).
  • are taking valbenazine (Ingrezza®).

Other possible serious side effects include:

  • Irregular heartbeat (QT prolongation). AUSTEDO® increases your chance of having certain changes in the electrical activity in your heart. These changes can lead to a dangerous abnormal heartbeat. Taking AUSTEDO® with certain medicines may increase this chance. If you are at risk of QT prolongation, your healthcare provider should check your heart before and after increasing your AUSTEDO® dose above 24 mg a day.
  • Neuroleptic Malignant Syndrome. Call your healthcare provider right away and go to the nearest emergency room if you develop these signs and symptoms that do not have another obvious cause: high fever, stiff muscles, problems thinking, very fast or uneven heartbeat, or increased sweating.
  • Restlessness. You may get a condition where you feel a strong urge to move. This is called akathisia.
  • Parkinsonism. Symptoms include: slight shaking, body stiffness, trouble moving, trouble keeping your balance, or falls.

Sleepiness (sedation) is a common side effect of AUSTEDO®. While taking AUSTEDO®, do not drive a car or operate dangerous machinery until you know how AUSTEDO® affects you. Drinking alcohol and taking other drugs that may also cause sleepiness while you are taking AUSTEDO® may increase any sleepiness caused by AUSTEDO®.

The most common side effects of AUSTEDO® in people with Huntington’s disease include sleepiness (sedation), diarrhea, tiredness, and dry mouth.

The most common side effects of AUSTEDO® in people with tardive dyskinesia include inflammation of the nose and throat (nasopharyngitis) and problems sleeping (insomnia).

These are not all the possible side effects of AUSTEDO®. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

Please read the accompanying Medication Guide.

References: 1. Taking care of you: self-care for family caregivers. Family Caregiver Alliance website. https://www.caregiver.org/taking-care-you-self-care-family-caregivers. Published 2012. Accessed September 23, 2019. 2. Care for the family caregiver: A place to start. National Alliance for Caregiving website. http://www.caregiving.org/data/Emblem_CfC10_Final2.pdf. Published March 2010. Accessed September 23, 2019. 3. A Caregiver Guide for HD Families. Huntington’s Disease Society of America website. http://hdsa.org/wp-content/uploads/2016/05/HDSA_CaregiverGuideFamilies_Final.pdf. Published 2016. Accessed September 23, 2019. 4. Talking about HD with family and friends. Huntington’s Disease Youth Organization website. https://en.hdyo.org/tee/articles/387-en.pdf. Accessed September 23, 2019.