Being diagnosed with Huntington’s disease (HD) can be overwhelming, not only for the person with the condition but also for their loved ones. This progressive brain disorder affects movement, thinking, and emotions, and while there is currently no cure, there are many steps you can take to live as well and as fully as possible for as long as possible. Managing HD is about more than medications—it’s about building a lifestyle that supports your physical, emotional, and mental well-being.
Here’s how to take care of yourself and maintain the best possible quality of life as Huntington’s disease progresses.
Prioritize Regular Exercise
Physical activity plays a powerful role in improving both mental and physical health, especially when living with a chronic condition like HD. Studies suggest that regular exercise can help improve motor function, boost mood, and reduce anxiety and depression. Even light activities like walking, stretching, yoga, or dancing can make a difference.
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As the disease progresses, you may need to adapt your exercise routine or work with a physical therapist who understands Huntington’s disease. They can help you find safe ways to stay active and prevent falls or injury.
Focus on Nutrition
Healthy eating is crucial for anyone, but for people with Huntington’s disease, it’s even more important. Involuntary movements caused by HD can significantly increase the number of calories your body uses—sometimes up to 5,000 calories per day—making weight loss a common concern.
A high-calorie, nutrient-rich diet may be recommended by your healthcare provider to help maintain your strength and body weight. This might include frequent meals and snacks, high-protein foods, and healthy fats. Some individuals also have difficulty swallowing (a condition known as dysphagia), so your provider or a dietitian might suggest softer food textures or thickened liquids to reduce the risk of choking.
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Stay Hydrated
Because Huntington’s disease can affect your ability to swallow, dehydration becomes a serious risk. You may not feel thirsty, or you might struggle to drink liquids safely. That’s why staying hydrated requires planning and attention. In some cases, a speech-language pathologist can help assess your swallowing ability and recommend strategies or modifications that make drinking safer.
Drinking plenty of fluids throughout the day—and using hydration aids or thickening agents if recommended—can help support your overall health and prevent complications such as urinary tract infections, kidney issues, or confusion.
Build Your Support Network
A diagnosis of Huntington’s disease can be isolating—but it doesn’t have to be. Connecting with others who understand what you’re going through can make a big difference emotionally and mentally. Support groups, whether in-person or online, provide a safe space to share experiences, tips, and encouragement.
Ask your healthcare provider or a social worker for information about local or virtual Huntington’s disease support groups. You can also explore national organizations like the Huntington’s Disease Society of America (HDSA) for additional resources, advocacy, and community.
Plan for the Future with Care Services
Huntington’s disease is progressive, meaning your care needs will change over time. Early planning can ensure that you’re prepared for whatever comes next. It’s important to begin researching home healthcare providers, respite care, and long-term nursing facilities before a crisis arises.
By establishing care options early, you can remain in control of your preferences and reduce the burden on family members later. Consider creating an advance directive or living will that outlines your wishes for end-of-life care.
Designate a Trusted Advisor
One of the most difficult but necessary decisions is selecting someone to manage your affairs when you no longer can. Over time, HD can affect cognitive abilities and judgment, making it challenging to handle finances, healthcare decisions, or legal matters.
Choose someone you trust—whether a family member, friend, or legal guardian—and talk with them about your values, priorities, and expectations. Work with an attorney to establish power of attorney (POA) and review your legal documents regularly.
Ask the Right Questions
Living with Huntington’s disease means staying informed and proactive. Regular check-ins with your healthcare team can help you manage symptoms, adjust treatment, and prepare for changes. Here are some important questions to ask your provider:
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What’s my prognosis?
Understanding the expected course of the disease can help you plan for the future. -
What type of treatment do you recommend?
This may include medications, therapy, and lifestyle changes. -
What side effects from treatment should I look for?
Knowing what’s normal and what’s concerning can help you catch complications early. -
How do I prevent complications?
Your provider can help you anticipate and manage issues like falls, infections, and nutrition problems. -
How should I prepare for end-stage Huntington’s disease?
This may involve hospice care, palliative support, and comfort-based decision-making. -
Do you recommend genetic testing for others in my family?
Since HD is hereditary, a genetic counselor can help your relatives understand their risks and make informed choices.
Final Thoughts
Although you can’t prevent Huntington’s disease, you can plan for it. Because symptoms typically worsen gradually over years, you have time to build a strong support system, find healthcare providers you trust, and make thoughtful choices about your care and future.
Living with HD isn’t easy—but you are not alone. With the right tools, resources, and community, you can maintain a high quality of life and meet each stage of the disease with strength, dignity, and support.
