Huntington’s disease: 5 strategies for self-advocacy

Huntington's disease (HD) is a genetic disorder that causes a progressive breakdown of nerve cells in specific parts of the brain. It affects the parts of the brain that control movement, communication, memory, and cognition. HD can lead to a wide range of symptoms and complications, including involuntary movements (called chorea), cognitive decline, and psychiatric symptoms (such as depression, anxiety, irritability, and impulsivity).

Self-advocacy is a person’s ability to take an active role in their healthcare, including treatment decisions. It involves communicating questions, needs, and concerns to a healthcare provider, and being open and honest during appointments.

Self-advocacy is important when living with HD, especially in the early stages of the disease. As HD progresses, cognitive decline will eventually make it more difficult to advocate for yourself. This makes it critical to practice self-advocacy skills early, involve caregivers early, and make important decisions while you are still able to advocate for yourself.

Here are a few strategies that can help.

Prepare for your appointments

Before each appointment, set a goal (such as discussing a specific symptom or treatment), practice describing your concerns concisely, write down and prioritize your questions, and gather necessary information like insurance details or records from other providers.

Keep a symptom journal

If you aren't already, start keeping a symptom journal. Use it to keep track of symptoms and changes in symptoms, how you are feeling each day, anything that seems more difficult, or anything that you are finding challenging. This can provide important information to you and your healthcare provider. Journaling can also help you manage stress and difficult emotions.

Be clear and direct

Speak honestly with your healthcare provider about your needs and concerns:

• Be honest and direct when answering your healthcare provider’s questions.
• Tell your provider when a concern isn't being addressed or when you need more information.
• Ask for clarification if something is confusing. It also helps to repeat information back to be sure you understand what your provider has explained.
• Acknowledge when topics feel uncomfortable to discuss.
• Use "I" statements to be direct (for example, "I want to know more about my treatment options").

Involve a caregiver early on

People with HD will need help from caregivers or care partners at some point. It’s helpful to involve a trusted loved one in your treatment early on. This can help your loved one become familiar with the condition, treatment, and what to expect in the future.

A caregiver or care partner can accompany you to appointments as a source of emotional support and an advocate. Some of the ways a loved one can help at an appointment include:

• Taking notes and keeping track of what is discussed and what needs to be discussed
• Asking questions and asking for explanations of complex topics
• Updating a healthcare provider about symptom changes or other observations about symptoms or changes they've noticed
• Learning about your treatment options and your treatment preferences
• Helping you follow through on steps after appointments

Learn about treatment options for HD

While there is no cure for HD, various treatments can help manage symptoms. These include medications to help manage involuntary movements, and medications to help with psychiatric symptoms like depression, anxiety, and changes in behavior. Physical therapy, occupational therapy, speech therapy, and nutritional support are often important parts of treatment.

You may also want to know about clinical trials for therapies under development. If this is something you are interested in, talk about it with your healthcare provider.