By Andy Esch, MD
Living with Huntington’s disease can be extremely challenging. It’s a disease of the nervous system and brain, with symptoms that typically progress over time. These can include uncontrollable movements in your arms, legs, or body overall; painful muscle jerking; and difficulty swallowing or breathing. Huntington’s can also cause mental disturbances such as nervousness, mood swings, depression, and personality changes.
Huntington’s is often called the “family disease.” Knowing that your children have a 50/50 chance of inheriting the disease, without a way to prevent it, can be extremely distressing.
These challenges are difficult, but they can be managed so that you and your family can live life as well as possible. Palliative care can ease your burden and improve your quality of life.
Palliative care (pronounced pal-lee-uh-tiv) is specialized medical care for people living with a serious illness, like Huntington’s disease. This type of care is focused on relief from the symptoms and stress of the illness. The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a specially trained team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness, and it can be provided along with other medical treatment.
How Palliative Care Helps Those Living with Huntington’s Disease
Palliative care teams are expertly trained to manage the symptoms, side effects, and stresses of serious illnesses like Huntington’s disease. They can provide medication to relieve muscle spasms, calm nervousness, and manage shortness of breath. They can also help you adjust, understand complex medical information, and match your treatment choices to your needs and goals.
Palliative care specialists can support you and your family as you process what the diagnosis of Huntington’s disease means for you, and those you love. It is important to remember that the team is there for you and for your family.