4 steps to take when diagnosed with Huntington’s disease

Huntington’s disease (HD) is a genetic disorder that causes a progressive loss of nerve cells in the brain. It affects the parts of the brain that control movement, thinking, and emotional regulation. While it can develop at any age, it most commonly begins in a person’s 30s or 40s.

While HD is a different experience for everyone, people in the early stage of HD may notice cognitive changes, mild motor symptoms (such as involuntary movements, called chorea), and/or behavioral and mood symptoms. These early changes may or may not interfere with everyday activities.

Early-stage Huntington’s disease symptoms:

• Mild difficulty with planning, organization, or multitasking
• Slight involuntary movements such as fidgeting or twitching
• Changes in mood or behavior, including irritability, anxiety, or depression
• Slower thinking or trouble recalling information quickly

While early-stage symptoms are usually mild, HD is a progressive condition where symptoms become more severe over time. A diagnosis of early-stage Huntington’s disease can feel overwhelming to people with the condition and their families.

If you or a loved one has been diagnosed with early-stage HD, the following overview highlights four key steps to take in the months after diagnosis.

Establish your healthcare team

A person treating HD will work with multiple healthcare providers with different specialties. The members of a healthcare team can change over time, and may include:

• Neurologists, including movement disorder specialists
• Genetic counselors, who help explain genetic test results and discuss how genetics can impact other family members
• Psychiatrists or psychologists, who help manage mood, anxiety, irritability, or behavioral changes
• Primary care providers, who oversee basic healthcare needs and may help coordinate care
• Physical, occupational, and speech therapists, who support mobility, coordination, communication, and daily functioning
• Social workers, who help with counseling, care planning, navigating the healthcare system, and accessing resources
• Nurses, who play a critical role in monitoring symptoms, patient education, and coordinating care
• Pharmacists, who are a valuable source of information about drugs and drug interactions

Understand your treatment options

Treatment for HD focuses on managing symptoms and maintaining quality of life. There are currently no therapies that can cure the disease or alter its progression. The therapies prescribed will depend on the symptoms a person is experiencing. Examples include:

• Medications to help reduce involuntary movement symptoms
• Medications to treat depression, anxiety, and/or behavioral changes
• Physical, occupational, and speech therapy to help maintain mobility, functioning, and communication

What treatments are under development?

Treatment for HD is evolving, and medical researchers are studying a number of therapy options with the goal of finding treatments that can slow or stop HD. Some therapies may be available through clinical trials. This is a topic worth discussing with your healthcare providers.

Build routines and habits

Following consistent habits and routines can be helpful when managing a condition that affects memory and thinking. And it’s helpful to start establishing habits and routines in the early stages of HD. Strategies include:

• Writing down important information, reminders, and daily tasks
• Using calendars, alarms, and electronic reminders for schedules, medications, and bill payments
• Keeping the home and workspace organized to reduce frustration and make items easier to find
• Following a consistent daily and weekly schedule
• Taking steps or setting aside time to reduce stress
• Maintaining good sleep hygiene (going to bed and waking at the same time each day), as sleep disruptions can worsen HD

Build your support network

Think about the types of support you may need and the people in your life who can help. A support network can include:

• Family members and friends
• Support groups for people living with HD and their loved ones
• A healthcare social worker (mentioned above as part of a healthcare team)
• Your healthcare providers, who should be informed about any challenges with mood, function, or managing your symptoms

Support needs and independence will change over time. In the early stage of HD, it’s helpful to address important decisions such as financial planning, power of attorney, advance directives, and preferences about future medical care. Social workers, genetic counselors, and legal professionals can help in this process.