Huntington’s Disease and Palliative Care

What is Huntington’s Disease?

Huntington’s Disease is a disease of the nervous system and brain. Huntington’s Disease is often called the “family disease.” Every child of a parent with the disease has a 50/50 chance of getting it. There is no way to prevent it.

Understanding Palliative Care

Palliative (pronounced “pal-lee-uh-tiv”) care is specialized medical care for people with a serious illness such as Huntington’s Disease. The goal of palliative care is to improve quality of life for both the patient and their family. It does this by providing relief from the symptoms and stress of a serious illness like Huntington’s Disease.

Palliative care is provided by a team of palliative care specialists, including doctors, nurses and social workers. The team works together with your other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in your illness and you can have it with all other treatments.

Huntington’s Disease Symptoms and Treatment – How Palliative Care Can Help

The symptoms of Huntington’s Disease may get worse over time as you age. Physical symptoms can include:

• Lack of coordination
• Movements in your arms, legs or body that you cannot control
• Painful muscle jerking
• Problems with swallowing or breathing

Huntington’s Disease can cause mental disturbances too. These can include:

• Changes in personality
• Changes in mood
• Nervousness
• Dementia

Palliative care can make a big difference. The palliative care team can manage symptoms and side effects of treatment. They can provide medications to relieve muscle spasms, calm nervousness and manage shortness of breath. Sometimes feeding tubes are necessary for nutrition if swallowing becomes difficult.

Palliative care specialists are experts in treating the symptoms of Huntington’s Disease and the side effects of treatments. They can help you adjust, understand complex medical information, and help you match your treatment choices to your needs and goals. And they will spend as much time as it takes. It is important to remember that your palliative care team is 100 percent there for you, and for your family.

How to Get Palliative Care

Ask your doctor for a referral to palliative care if you or a loved one is living with Huntington’s Disease.  You can get palliative care in the hospital, at an outpatient clinic and sometimes at home.

Palliative care can ease your burden and help your quality of life. For more information, explore GetPalliativeCare.org. Take the quiz to find out if palliative care is right for you. And find providers in your area by visiting the Palliative Care Provider Directory.