Being diagnosed with Huntington’s disease can feel overwhelming. You may have many questions about what happens next and how it will affect your life. While there is no cure, there are ways to manage symptoms, stay active and maintain a good quality of life.
You don’t have to face this alone. Banner Health is here to help you find the best treatment plan. With proper care, people with Huntington’s can continue enjoying life, stay independent longer and find comfort in their daily routines.
What is Huntington’s disease?
Huntington’s disease is a genetic (inherited) disorder that affects the brain, causing changes in movement, thinking and behavior over time. It happens due to a gene mutation that leads to nerve cell damage in the brain. If a parent has Huntington’s, their child has a 50% chance of inheriting it.
Symptoms usually appear between 30 and 50 but can start earlier or later in life. Common symptoms include:
- Uncontrolled jerking or twitching movements (chorea)
- Trouble walking or balancing
- Stiff or rigid muscles
- Trouble with memory, decision-making and concentration
- Mood changes, such as depression, anxiety or irritability
- Difficulty swallowing or speaking
Since Huntington’s is a progressive disease, symptoms get worse over time. However, treatment can help you maintain independence as long as possible and enhance your daily life.
Learn more about the symptoms of Huntington’s disease.
Treatment options for Huntington’s disease
There is no cure for Huntington’s disease, but treatment focuses on managing symptoms and improving quality of life. Your care plan may include:
Medications
Health care providers may prescribe different medicines to help with movement, mood and thinking problems.
- Tetrabenazine and deutetrabenazine: Help reduce involuntary movements
- Antipsychotic medications: May help with severe movements or behavior changes
- Muscle relaxants: Improve flexibility and reduce stiffness
- Antidepressants: Help with depression, anxiety and mood swings
- Mood stabilizers: Manage extreme mood changes
- Anti-anxiety medications: Reduce stress and improve sleep
There is no medication to stop cognitive decline, but some drugs used for Alzheimer’s disease may help with memory and concentration.
Talk to your health care provider or a Banner Health specialist about the benefits and side effects of each medication.
Therapies
In addition to medications, different types of therapies can help you stay active, communicate better and handle daily tasks more easily.
- Physical therapy: A physical therapist can help you improve strength, balance and coordination, making walking and moving safely easier.
- Occupational therapy: An occupational therapist can teach you ways to perform everyday activities like dressing or eating. They can also teach you to use special tools (like weighted utensils) and make changes around your home to prevent falls and injuries.
- Speech therapy: A speech therapist can help with speaking clearly, swallowing safely and using alternative communication methods if speech becomes difficult.
Taking care of your mental and emotional health
Living with Huntington’s disease can be emotionally challenging. Many people experience depression, anxiety or frustration. Taking care of your mental health is as important as managing physical symptoms.
- Counseling and therapy: Talking to a counselor or psychologist can help you cope with the emotional effects of the disease. They can give you strategies for managing stress and mood swings and a safe space to talk about fears and concerns. Therapists can also support family members and caregivers.
- Support groups: Connecting with others who have Huntington’s disease can make a difference. These groups can provide encouragement, advice and a sense of community. There are both in-person and online groups available. For community and social support, visit the HDSA’s website.
- Mindfulness and relaxation techniques: Practices like meditation, deep breathing and yoga can reduce stress, improve focus and mood and promote relaxation and better sleep.
Making daily life easier with Huntington’s disease
As symptoms progress, daily tasks may become harder. Small changes can help you stay independent and safe.
To improve safety in your home:
- Remove loose rugs and clutter to prevent falls
- Install grab bars in bathrooms and stair railings
- Use non-slip mats and bright lighting
To make daily activities easier and help retain your independence, use assistive devices:
Managinging Huntington’s disease with healthy lifestyle choices
Although there is no way to stop Huntington’s disease, making healthy choices can improve overall well-being.
- Eat a nutritious diet: Focus on brain-healthy foods like lean proteins, fruits and vegetables. Difficulty swallowing and changes in appetite can make it harder to maintain a healthy diet. Work with a registered dietitian to help design a meal plan that supports your health and addresses these issues.
- Stay physically active: Gentle exercises like walking, swimming or stretching can help with mobility.
- Get enough sleep: A regular sleep schedule improves mood and brain function.
Planning for the future
Because symptoms will worsen over time, planning ahead can help you and your family feel more prepared.
Legal and financial planning is important and should include:
- Creating a will to ensure your wishes are followed
- Assigning power of attorney to a trusted person to make decisions on your behalf, if needed
- Setting up an advance directive to guide medical care in the future
Look into long-term care options like:
- In-home caregivers for daily help
- Assisted living for extra support
- Palliative and hospice care for comfort and support
Learn more about living with Huntington’s disease and what support resources are available.
You’re not alone
A Huntington’s disease diagnosis can feel isolating but support is available. There are treatments, therapies and support systems to help you have a good quality of life for as long as possible.
Contact Banner Health to discuss the best treatment plan for you. There is hope and help is always available.
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