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For Caregivers

Huntington's disease often affects the entire family as well as the individual suffering with HD. As a caregiver, you will face many challenges—from helping your loved one manage day-to-day to managing things like household chores and finances. It is important to realize that the more you know about how Huntington's disease progresses and affects a person's moods, movement, and thinking, the better you can provide care and understanding.

It is also important to realize that being a caregiver has its own set of issues, from feeling isolated and lonely to feeling overwhelmed. Make sure you don't forget about your own needs, and take the time to care for them, too.

Explore our site for information on Huntington's disease and chorea and to learn about Xenazine. Be sure to also read how one family copes with the chorea associated with Huntington's disease while maintaining as much independence as possible.

These 10 tips from the Family Caregivers Alliance can help you and your loved one better prepare for life with HD:¹

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 physically and mentally by a qualified health care team. This will ensure an early and effective treatment plan that may address your loved one's chorea in addition to other symptoms of HD.

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 health care to grooming to safety, it's important to determine what kind of assistance your loved one will need and want. Reach out to health care 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 health care 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.

Sources:

Family Caregiver Alliance Website: http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=392

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. 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) SRL