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Tips for HD Chorea Caregivers

Sue and Jeff’s Story

Sue and Jeff share their experiences living with Huntington’s disease, from their initial reactions to her diagnosis to working with their doctor to find treatment for her HD chorea symptoms.

Hear from Sue and Jeff »

Caregivers Discuss Considering HD Chorea Treatment

Considering treatment for chorea associated with Huntington’s disease? Hear from caregivers about considering HD chorea treatment

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As a caregiver, you will face many challenges — from helping your loved one manage day to day to taking charge of household chores and finances. These tips from Family Caregiver Alliance are offered to help you coordinate the needs of your loved one during this critical time. Family Caregiver Alliance is a nonprofit organization that addresses the needs of caregivers providing long-term care at home.

As a caregiver, I feel it’s very important not to let myself get burnt out because I need to be able to care for the person with Huntington’s disease. Sometimes you just need to get away and let other people come in and help care for them. I like to get out and exercise and walk and just kind of relieve the pressure — mental pressure — that may be associated with the disease.”
~ Sara, caregiver of person living with HD

These 10 tips can help caregivers:2

  1. Determine your starting point

    Talk with family and friends to get a realistic idea of how long symptoms have been going on, the types of symptoms, etc. This can help determine your loved one’s care now and down the road.

  2. Get a thorough understanding of your loved one’s condition

    Make sure your loved one is evaluated by a qualified healthcare team. This will ensure an early and effective treatment plan based on your loved one’s symptoms of HD. Talk with your doctor about any concerns you have and become an advocate for your loved one’s healthcare needs.

  3. Become informed

    Learn all you can about HD from doctors, books, the Internet, health and social service professionals, and people who know what you’re going through. Learn how Huntington’s disease progresses and the level of care that may be required.

  4. Know your loved one’s needs

    From healthcare to grooming to safety, it’s important to determine what kind of assistance your loved one will need and want. Reach out to healthcare professionals and caregiver centers to find quality care in your area.

  5. Have a plan

    Once your loved one’s needs are determined, it’s time to put a plan into action. The plan will change over time as your loved one’s condition and needs change. Figure out what you need help with and recruit family, friends and neighbors.

  6. Determine your loved one’s financial situation

    To help give your loved one the best care, you need to know his or her financial assets and liabilities. You may want to seek help from a financial planner or attorney.

  7. Have access to legal documents

    Legally binding documents can help ensure you’re carrying out your loved one’s wishes regarding everything from financial and healthcare decisions to burial arrangements.

  8. Create a safe home environment

    Be aware of fire hazards, things that can cause falls, dangerous products and sharp objects. Be sure to have emergency information handy, and watch your loved one’s food and medication intake.

  9. Connect with other caregivers

    Get support from other caregivers who know what you’re going through. Try local support groups or connect online.

  10. Stay healthy

    Being a caregiver can be stressful. Make sure you get regular check-ups, eat right, exercise and take time out for you.

XENAZINE® (tetrabenazine) Tablets

Indications and Usage:

XENAZINE is a medicine that is used to treat the involuntary movements (chorea) of Huntington's disease. XENAZINE 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.

It is not known whether XENAZINE is safe and effective in children.

Important Safety Information:

  • XENAZINE can cause serious side effects, including:
    • depression
    • suicidal thoughts
    • suicidal actions
  • You should not start taking XENAZINE 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, or worsening depression. This is especially important when XENAZINE is started and when the dose is changed.
  • Do not take XENAZINE if you have liver problems or are taking monoamine oxidase inhibitors (MAOIs) or reserpine. Ask your doctor or pharmacist if you are not sure. At least 20 days should pass after stopping reserpine before starting XENAZINE.
  • Tell your doctor if you are pregnant or plan to become pregnant, breast-feeding, have breast cancer or a history of breast cancer, or have heart disease or an irregular heartbeat.
  • Tell your doctor about all the medicines you take. Do not start any new medicines while taking XENAZINE without talking to your doctor first.
  • Take XENAZINE exactly as prescribed by your doctor. The need for therapy should be evaluated on an ongoing basis with your doctor. The dose of XENAZINE should be adjusted slowly over several weeks for a dose that is appropriate for you. Tell your doctor if you stop taking XENAZINE for more than 5 days. Do not take another dose until you talk to your doctor. If your doctor thinks you need to take more than 50 mg of XENAZINE each day, you will need to have a blood test to see if a higher dose is right for you.
  • Neuroleptic Malignant Syndrome (NMS) is a potentially fatal side effect reported with XENAZINE. Call your doctor 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. XENAZINE should be stopped immediately if NMS is diagnosed.
  • XENAZINE can also cause other serious side effects, including: parkinsonism (slight shaking, body stiffness, trouble moving, or keeping your balance), restlessness (akathisia), trouble swallowing, irregular heartbeat, and dizziness due to blood pressure changes when you change position (orthostatic hypotension). Trouble swallowing may increase the risk of pneumonia. Uncontrolled movements called tardive dyskinesia (TD) may also develop in patients treated with XENAZINE. It is possible that the TD will not go away.
  • The risk of side effects, such as irregular heartbeat, parkinsonism, NMS, and restlessness (akathisia), may be increased when using XENAZINE with other drugs (e.g., dopamine antagonists or antipsychotics).
  • Sleepiness is a common side effect of XENAZINE; do not drive a car or operate dangerous machinery until you know how XENAZINE affects you. Alcohol and other drugs may increase sleepiness caused by XENAZINE.
  • Some side effects, such as depression, tiredness, trouble sleeping, sleepiness, parkinsonism, agitation, and restlessness (akathisia), may be dose-dependent. If the side effects don’t stop or lessen, your doctor should consider lowering the dose or stopping your XENAZINE. The most commonly reported side effects in studies with XENAZINE were sleepiness, trouble sleeping, depression, tiredness, anxiety, restlessness, agitation, and nausea.

For more information, please see the full Prescribing Information, including Boxed Warning, the Medication Guide or go to

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit, or call 1-800-FDA-1088.


  1. "FDA Approves First Drug for Treatment of Chorea in Huntington's Disease", FDA News Release, August 15, 2008: Updated April 15, 2013. Accessed August 17, 2015.
  2. Caring for Adults with Cognitive and Memory Impairments. Family Caregiver Alliance website. Accessed on March 18, 2013.