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Supporting a Loved One

Taking care of a family member or friend living with HD can be exhausting and emotionally challenging. You may feel isolated, alone and overwhelmed. Print out our chorea associated with HD caregiver's guide and read some suggestions below that might help you cope.

Break down tasks into steps. Making everyday activities more manageable can help your loved one maintain some independence. But, be ready to assist when needed.¹

Learn how to communicate in a new way with your loved one. Speak clearly and in short sentences. Give your loved one time to think and respond.¹

Make sure your loved one gets regular exercise, like taking short walks. Exercise can help both the patient's physical and emotional well-being. Wearing comfortable, sturdy shoes during exercise can help with stability.²

Maintain proper nutrition. Patients with Huntington's disease can burn extra calories due to the movements of chorea, so it is important that they get adequate nutrition to maintain body weight, as well as plenty of water. Ask your doctor or nutritionist if extra vitamins or supplements might be necessary.²

Cut food into smaller pieces to help make food easier to swallow and prevent choking. You may want to consider pureeing certain foods, too.²

Provide cups with lids and suction cups and tableware designed for people with disabilities. Providing bendable straws can make it easier for someone with chorea to drink.²

Lessen the risk of falls and injury due to balance problems. Remove area rugs, install grab bars in bathrooms, and clear rooms of sharp or breakable objects.¹

Sources:

Family Caregiver Alliance Web site: http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=392
Huntington's Disease. Mayo Clinic. http://www.mayoclinic.com/health/huntingtons-disease/DS00401

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 increase the chance of depression, suicidal thoughts or suicidal actions in some patients.
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. 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 or reserpine. At least 20 days should pass after stopping reserpine before starting Xenazine. Tell your doctor if you are pregnant, breast-feeding or have breast cancer.

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. 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 Xenazine is safe for you.

Neuroleptic malignant syndrome (NMS), restlessness, agitation, parkinsonism (slight shaking, body stiffness, trouble moving or keeping your balance), trouble swallowing, dizziness, and irregular heartbeat have also been reported with use of Xenazine. Do not use Xenazine with drugs known to cause irregular heart beat. Side effects associated with Xenazine, such as irregular heartbeat, NMS, and parkinsonism, may be increased if used together with drugs called dopamine antagonists. Uncontrolled movements called tardive dyskinesia (TD) may develop in patients treated with Xenazine. It is possible that the TD will not go away.

Xenazine may cause sleepiness or drowsiness, and may affect the ability to drive or use dangerous machinery. Some side effects, such as depression, tiredness, trouble sleeping, sleepiness/drowsiness, parkinsonism, and restlessness, 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/drowsiness, tiredness, trouble sleeping, depression, restlessness, anxiety, and nausea.

For more information, please see the Xenazine Medication Guide and Full Prescribing Information, including Boxed Warning.

®Xenazine is a registered trademark of Biovail Laboratories International (Barbados) S.R.L.

XZN118

The product information provided in this site is intended only for residents of the U.S. The health information contained herein is provided for educational purposes only and is not intended to replace discussions with a healthcare provider.