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Enhancing Quality of Life: Practical Tips for Maintaining Independence with Huntington’s Disease

Just about everyone wants to be independent and enjoy their lives. But people with Huntington’s disease can struggle to do the things they want to do on their own. That’s because Huntington’s disease is a neurological condition that affects and causes problems with thinking, movement and behavior.

“People with Huntington’s may have trouble thinking clearly. They may have difficulty with coordination and balance and have involuntary or uncontrolled movements called chorea. And they may struggle with mood swings, irritability, anxiety or depression,” said David Shprecher, DO, a neurologist specializing in movement disorders with Banner Sun Health Research Institute.

Unfortunately, there is no way to prevent Huntington’s disease. People who have a parent with Huntington’s disease have a 50% chance of getting it themselves. 

Although there is also no cure for Huntington’s disease, people who develop the disease live an average of 18 to 20 years after being diagnosed. During that time, the disease progresses and the symptoms of the disease slowly get worse. 

“The thinking problems associated with Huntington’s eventually interfere with the ability to work, keep track of appointments or manage finances,” said Dr. Shprecher. “Additionally, coordination and balance problems can interfere with independence with chores and self-care.”  

While Huntington’s disease is not curable, treatment can help people stay independent and active for as long as possible. Treatment can include:

  • Physical and occupational therapy for coordination and balance problems
  • Speech therapy for swallowing problems and communication issues
  • Medication for involuntary movements and behavioral health problems 

If you have Huntington’s disease, it can have a major impact on your life. Here are some options that can help you stay independent.  

Be as active as you can

Gentle exercises like yoga and walking can help you maintain as much strength as possible. You may want to involve your caregivers for support. “Exercises prescribed by a physical therapist can help delay the worsening of balance problems from Huntington’s disease,” said Dr. Shprecher. “However, you may need a walker or wheelchair for safety in the advanced stages.”

Create a safe space  

Movement and balance problems can make you prone to falls that can cause injury. Modify your home to make falls less likely. Keep clutter off the floors, get rid of throw rugs, make sure electrical cords and charging cables aren’t tripping hazards, use lights in hallways and bathrooms at nighttime and install grab bars near toilets and bathtubs. 

Pursue your hobbies

Spending time on hobbies you love is a key part of enjoying your life. Adaptive devices can make it easier to keep up with your interests, especially in the early stages of the disease. 

“Involuntary movements can make it difficult to hold still, so you may need to adapt. For example, using a cardholder while playing card games like poker may make it easier to avoid dropping the cards or revealing your hand,” said Dr. Shprecher.

Add creative activities to your life

Many people find that music and art can add value to their lives. You may want to sing, play an instrument if you’re able or listen to recorded or live music. You may also want to paint, draw, sculpt, write poetry or journal for as long as possible.

Stay connected with others

Spending time with family and friends can be good for your physical and mental health. Meet for lunch, visit museums, attend concerts and participate in activities that are meaningful to you. 

You may also want to join an in-person or online support group for people with Huntington’s disease. That way, you can interact with other people who are dealing with similar issues.

Keep your brain active

Challenging your brain with engaging activities may help it remain stronger for longer. Reading, playing games and solving puzzles are good options. 

Choose a balanced diet

A diet centered around nutritious foods is always a good choice. And healthy eating can improve your energy levels.

Adaptive devices like utensils with bigger handles and plates with spill guards can help you stay independent at mealtime. You may also want to work with a dietitian for personalized advice about good food choices.

Follow routines

Routines can make your days more structured and predictable. They are important for your comfort and well-being.

Writing down your daily routine can be helpful, so you don’t have to rely on your memory. Placing reminders on sticky notes in key places can also help you remember what you need to do.

Find ways to reduce stress that work for you

Living with Huntington’s disease can bring a lot of changes that add stress to your life. Taking steps to cope with that stress can improve your emotional well-being. You may want to try meditation, mindfulness or relaxation techniques like deep breathing.

Consider adopting an emotional support animal

Research has found that having a dog can improve mood, quality of life and symptoms. A dog can also prompt you to be more physically active. Having a companion animal in the home also benefits caretakers and other family members.

Connect with professional support

Huntington’s disease is a complicated condition and can be hard to deal with for the people who have it and their families. Your primary care provider, occupational therapist, physical therapist and other health care professionals are there to support you. Contact them with any questions or concerns about staying independent and active.

Also, organizations like Huntington’s Disease Society of America can help people connect with resources and support that can help.

The bottom line

While living with Huntington’s disease can be challenging, your health care team can work with you to develop a treatment plan that helps you manage your symptoms. That way, you can continue to live a life that’s as active, independent and rewarding as possible.

For more support as you live with Huntington’s disease, contact your primary care provider or neurologist or connect with an expert at Banner Health.

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