Adaptive Devices to Maintain Independence With Huntington’s Disease

Huntington’s disease (HD) affects the brain over time, causing symptoms such as involuntary movements, balance problems, changes in thinking, and mood and behavior symptoms. For many people, everyday tasks like bathing, walking, eating, remembering appointments, or communicating clearly gradually require more support as the disease progresses.

In some cases, adaptive devices and technology can help compensate for deficiencies caused by HD. When used for the right activities at the right time, they can make daily tasks safer and easier while helping people with Huntington’s disease maintain independence.

Occupational therapists (OT) and a physical therapist (PT) will be the experts on your care team to help you navigate your options, says Melissa Werz, an occupational therapist at Duke Health in Durham, North Carolina.

“In the early stages, the use of adaptive tools and technologies may make walking, communicating, eating, and drinking easier,” says Werz. Rehabilitation specialists can recommend the best devices for your individual situation, she adds.

Mobility and Balance

A PT with specialized training in neuro rehab can assess how symptoms such as balance changes, decreased coordination, and movement control are affecting your daily mobility.

“From there, we can design interventions to help you move more safely and confidently throughout the day,” says Robyn Wilson, DPT, a neurological physical therapist at Duke Health.

Mobility devices should make walking safer and more manageable — and not just another thing to coordinate. A PT can help decide whether footwear changes, trekking poles, a walker, rollator (a wheeled walker), or wheelchair makes sense based on balance, chorea, thinking changes, and fall risk, says Dr. Wilson.

Ideally, you are meeting with a therapist early-on. The sooner, the better, says Danny Bega, MD, an associate professor and a neurologist who specializes in movement disorders at Northwestern Feinberg School of Medicine in Chicago.

Start With Safer Footwear

Shoes can affect posture, balance, and walking. Helpful features may include:

• A firm, flat heel
• A wide heel base
• A firm heel counter to support the back of the foot
• A bendable forefoot
• Velcro closures if tying laces has become difficult
• High-top sneakers or shoes if ankle support is needed

Choose Walking Aids Carefully

Trekking poles or walking sticks may help some higher-functioning people, but they are not automatically safer.

“Recommendations for these depend on cognition, balance, and chorea. They can often be challenging to coordinate, which can create a distraction and actually hinder balance,” says Wilson.

A wheelchair does not always mean giving up walking. “I will often initially recommend a transport wheelchair for long community distances, and later, if necessary, recommend a comprehensive seating evaluation for a custom wheelchair,” says Wilson.

Home Safety and Convenience

The bathroom is often one of the first places to modify because wet floors, tubs, toilets, and standing showers can all raise fall risk.

Grab bars next to the toilet, in the shower, and near the shower entrance may help with transfers, says Werz.

She typically recommends shower chairs with arms and a back, or a tub bench if the person with HD has a bathtub. Swivel tub benches may be easier for some people.

Other tools, such as the following, can make grooming and daily routines less frustrating.

• Electric toothbrushes and razors can help when dexterity and coordination are reduced.
• A tabletop mirror and water basin can allow someone to sit and support the arm while grooming.
• A handheld shower head can make bathing easier from a seated position.
• A raised toilet seat with grab bars can reduce the effort needed to sit and stand.

When in doubt, or even if you just want a little support, schedule a home safety evaluation with an OT, says Werz.

Dr. Bega has the same advice: “A home PT or OT evaluation can identify missing grab bars, area rugs, tight spaces, and other hazards that may make daily movement less safe.”

Communication and Memory

Communication and memory supports can be high-tech, low-tech, or both. The goal is to reduce the number of steps a person has to remember and give them another way to express themselves when speech or typing becomes harder.

Text-to-speech apps "can help people with HD communicate when their voice is not understood by others,” says Meredith Kauffman, a speech-language pathologist with the Division of Speech Pathology and Audiology at Duke Health.

Kauffman also recommends:

• Reminder apps for medications, meals, showers, exercise, and appointments
• Whiteboards with the date and daily activities
• Written or picture-based schedules to support routines
• Labels on cupboards and drawers to make items easier to find

Voice-assistance devices may also help with phone or video calls, turning lights or electronics on and off, controlling thermostats, and allowing a care partner to communicate through “drop in” features.

Eating and Drinking

Eating can become harder when chorea, coordination changes, fatigue, or swallowing issues affect mealtimes. Adaptive tools may help someone eat more independently with less frustration.

Werz recommends:

• Larger-handled or weighted utensils to make gripping easier.
• Cups with lids to reduce spills.
• Nonslip mats to keep plates or bowls from sliding.
• High-edged plates (or a bowl) make scooping easier.
• Rocker knives when coordination is limited and cutting with a standard knife is hard.

The right position can help, too. Using arm support while eating can help when chorea makes hand and arm movements harder to control, she says.

But eating tools are not a substitute for a swallowing evaluation. “Coughing, choking, weight loss, slower eating, food left on the plate, food ending up on the table or floor, or worsening speech can all be reasons to involve a speech-language pathologist,” says Bega.

In most cases, when speech is impaired, then swallowing is also a risk, he says.

Who Can Help

The best adaptive device is not always the newest or most expensive one. It is the one that fits the person, the task, the home, and the stage of Huntington’s disease. These specialists can help you figure out what's most beneficial.

• Physical therapists can help with walking, balance, transfers, posture, footwear, and mobility aids.
• Occupational therapists can help with bathing, dressing, cooking, grooming, home safety, and adaptive eating tools.
• Speech-language pathologists can help with communication, memory strategies, mealtime safety, and swallowing concerns.
• Physiatrists, dietitians, social workers, or support groups may also help with equipment needs, nutrition, care coordination, and real-life problem solving.

The Takeaway

• The right adaptive tools can help people with Huntington’s disease stay safer, more independent, and more involved in daily life for longer.
• Simple changes, such as supportive footwear, grab bars, or easier-to-use eating tools, can make everyday tasks less frustrating.
• Technology such as reminder apps, voice-assistance devices, and speech apps may help with memory, routines, and communication.
• Get help from a physical therapist, occupational therapist, or speech-language pathologist early on to match tools to changing symptoms.