A Guide to Energy Management With Huntington’s Disease

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.