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 serious illness. 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 a serious illness. Palliative care works hand-in-hand with curative treatment.

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

Because Huntington’s affects the brain, it also causes serious mental disturbances. Mental symptoms can include:

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

While living with Huntington’s Disease is always a major challenge, palliative care can make a big difference. The palliative care team can provide medications that relieve muscle spasms, calm nervousness and manage shortness of breath. Sometimes feeding tubes are used to help with nutrition when swallowing becomes difficult.

A diagnosis of Huntington’s Disease can be very shocking. And adjusting to the disease can also be very hard, not only for you but also for your family.

Palliative care specialists are experts in treating the symptoms of Huntington’s Disease and the side effects of treatments, so they can help you and your family in many ways. They can help you adjust. They can help you understand complex medical information. They can help you match your treatment choices to your personal 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.

How to Get Palliative Care

If you or a loved one is facing Huntington’s Disease, ask your doctor for a referral to palliative care—the earlier the better. You can receive palliative care in the hospital, at an outpatient clinic and sometimes at home.

Although living with Huntington’s Disease is a difficult journey, palliative care can ease your burden and help you achieve the best possible 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.