Take Charge of Your Day: A Guide to Energy Management With Huntington’s Disease

Huntington’s disease (HD) is a rare inherited condition that gets progressively worse, affecting movement, thinking, mood, and behavior. For people living with HD, the “simple” tasks and activities of everyday life may not feel so simple anymore. Getting ready, eating a meal, walking through the house, making decisions, and staying focused can all take more effort as symptoms change.

In Huntington’s disease, energy management is about working with those changes — finding ways to optimize your lifestyle and daily habits to conserve your energy and feel better. If you shift your approach and make small adjustments — pace your activities, simplify routines, get enough calories, organize your home, and accept help — it can help you take charge of your day.

In simple terms, energy gets drained more quickly in people with Huntington’s disease.

“Even when someone with HD is at rest, their body tends to burn more energy than someone without HD — this is called ‘higher sedentary energy expenditure,’” says Robyn Wilson, DPT, a board-certified clinical specialist in neurological physical therapy in the department of rehabilitation services at Duke Health in Durham, North Carolina.

“The brain and muscles are working harder behind the scenes, which results in the person burning calories and tiring more quickly and easily,” she says.

Getting dressed, feeding yourself, and walking through the house take more energy because with HD you also have to work harder to coordinate movement, stay balanced, and manage involuntary movements, Dr. Bega says.

Because Huntington’s disease can increase calorie needs, eating enough can become an important part of energy management, says Meredith Kauffman, a speech-language pathologist in the division of speech pathology and audiology at Duke Health in Durham, North Carolina.

On top of that, excess movements can make it hard to eat enough at meals, she says.

Dietitian support can help families figure out whether a person is getting enough calories, whether they need shakes or softer foods that are easier to eat, whether meals are taking so long that the person gets full too quickly, or whether food texture is getting in the way, says Bega.

Kauffman’s top recommendations for getting enough calories:

• Work with a dietitian if possible.
• Drink protein shakes such as Boost or Ensure throughout the day.
• Focus on eating higher-calorie foods, and add butter, heavy cream, and peanut butter to what you’re eating to boost calories.

Along with nutrition, these daily habits can support your energy.

Keep moving, within safe limits. “Exercise is one of the most powerful tools we have in HD. It helps maintain strength, balance, endurance, and mobility,” says Wilson. Physical therapy programs can be tailored to the person’s abilities, safety needs, and changing symptoms, she says.

Protect sleep and use rest strategically. Try to follow all the general recommendations for good sleep hygiene, such as consistent bed and wake times. Poor sleep can worsen fatigue, mood, thinking, movement, and fall risk, Wilson says.

Naps can help, but only if they don’t interfere with your nighttime sleep. “Taking an hour-long nap is definitely okay to do, and can be helpful for recharging,” says Bega.

Ask about treatable causes of fatigue. “When we reduce movements with medications to treat chorea, sometimes just that makes the person less exhausted physically,” says Bega.

Treating depression, apathy, low motivation, fragmented sleep, or medication side effects can also improve energy, he says.

Review medications if fatigue worsens. Some Huntington’s disease medications help certain symptoms but can also cause fatigue, so treatment may need adjustment. “We may sometimes have to lower the dose and try to find the balance,” says Bega.

When energy is limited, how you spend it matters, says Melissa Werz, an occupational therapist at Duke Health in Durham.

Pacing, planning, and building in recovery times need to be daily habits, not a last resort after you are completely depleted.

Take Advantage of Your Windows of Energy

Energy levels in Huntington’s disease can shift throughout the day. “Try to notice when you feel strongest, steadiest, or most alert, and use that window for the activities that matter most or require the most effort,” says Wilson.

Plan higher-effort tasks, such as showering, appointments, or errands, for your best time, often earlier in the day or right after resting or a nap.

Pause and Break Tasks Down

Pacing is about avoiding long stretches of effort without recovery. Werz gives the example of showering, resting on the bed, and then getting dressed, instead of doing several high-energy tasks back-to-back.

Other strategies include:

• Sit for tasks you may have done standing in the past, such as dressing, grooming, showering, or preparing dinner.
• Break chores into smaller steps instead of trying to finish everything at once.
• Alternate more demanding tasks with easier ones or built-in rest.
• Use mobility aids when they help you move more safely and spend less energy. If walking is becoming less steady, work with a therapist to find the right option, says Bega.

Make Your Home Less Tiring to Move Through

Small changes at home can help you work “smarter, not harder,” Werz says.

“Organizing your environment to limit the need to walk around the house or go up and down stairs frequently can help save energy,” she says.

Here are some best practices for keeping your home streamlined for easy and safe navigation:

• Keep toiletries on the bathroom counter.
• Store dishes or pantry items at waist level.
• Place a chair where you get dressed.
• Keep frequently used items within easy reach.
• Remove clutter, area rugs, or other tripping hazards.
• Add grab bars where extra support is needed.

Home physical therapy or occupational therapy evaluations can also help identify missing grab bars, tripping hazards, and other home setup issues that may make the day less safe or more tiring, says Bega.

Keep Routines Predictable and Prioritize What Matters

A consistent routine can save energy by reducing the amount of thinking and decision-making required.

“Predictability and routine reduce cognitive load, confusion, and frustration; it simplifies decision-making and helps the body utilize energy more evenly,” says Wilson.

Werz recommends keeping consistent wake and sleep times, eating routines, and medication schedules. “Caregivers can also help by posting a simple schedule, preparing items ahead of time, and giving the person with Huntington’s disease enough time to process requests or transitions,” she adds.

Prioritizing is part of pacing, too. Some days, the most important task may be getting to a medical appointment. Another day, it may be showering, eating enough, or saving energy for a family event. The goal is not to do everything the old way, but to spend energy where it matters most.

Life with Huntington’s disease is often challenging and frustrating, especially when activities that once felt simple start to require more planning, help, or recovery.

While those feelings are natural and don’t need to be dismissed, self-compassion can help you continue to move forward. Wilson recommends:

• Focus on what can be done, not what used to be easy.
• Celebrate small improvements.
• Stay connected socially via support groups and through organizations like the Huntington’s Disease Society of America (HDSA) and HD Reach.
• Use movement as medicine; people in earlier stages of HD can participate in moderate-intensity exercise that emphasizes increasing heart rate for up to 150 minutes per week. Community exercise programs are a great way to keep moving and connect with other people.
• Get connected to an interdisciplinary HD clinic and lean on your providers for support, including your doctor, physical therapist, occupational therapist, speech-language pathologist, chaplain, and social worker.

“Engage in meaningful activities even if they have to be modified to some degree,” says Werz.

She uses pickleball as an example. “If you loved playing pickleball but can no longer play safely because of fall risk, you may be able to stay involved in the sport through officiating, coaching, volunteering, watching friends play, or listening to podcasts about the sport,” she says.

Caregivers can be part of that process by helping set up routines, prepare meals or snacks, simplify choices, schedule appointments, and notice fatigue patterns. With the right support, you can still have energy for the aspects of life that give you purpose and connection.

• Huntington’s disease can drain energy in many ways, including involuntary movements, higher calorie needs, sleep problems, mood changes, and the extra mental effort of daily tasks.
• You can keep your energy steady by eating enough, staying safely active, getting good sleep, and asking your care team about symptoms that may be treatable.
• Pace your day around your best times, build in rest, and simplify your home environment to make daily routines less exhausting.
• Lean on caregivers, therapists, dietitians, and support groups to help you stay safer and more connected to what matters.