ALS support: Assistive equipment and adaptations
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Assistive equipment and adaptive devices for people with amyotrophic lateral sclerosis (ALS) can help make life more manageable and comfortable.
ALS is a progressive motor neuron disease that affects a person’s ability to control their muscle movements and leads to speaking, swallowing, mobility, and breathing issues. As muscles weaken, people living with ALS may need aids for eating and drinking, getting dressed, bathing, using the toilet, grooming, and for recreation and mobility.
A range of home modifications also can make a person’s living environment more accessible. These include voice-activated house controls, ramps, and chair lifts. A person with ALS may also require support for communication and breathing.
Therapists and doctors may be able to prescribe certain adaptive devices to assist people and their caregivers and ensure the devices are being used effectively.
These aids and adaptive devices not only help a person physically, but also can give a boost to mental health by helping them maintain independence longer.
Mobility aids
Mobility aids are intended to keep a person with ALS active, providing the ability to engage in social activities, go to work or on vacation, and to attend medical appointments. These devices can include using a cane, orthotic braces, or a walker, and eventually moving to a manual or power wheelchair due to ALS disease progression.
A cane or walker can be used when stability is needed, to avoid falls, and for assistance when navigating uneven surfaces.
An orthotic brace, such as on the ankle, can help stabilize a weak limb, making it easier to rise from a sitting position. For people who have difficulty holding their head straight, a neck brace may increase stability and comfort.
ALS News Today columnist Dagmar Munn, who was diagnosed with ALS in 2010, uses a walker with wheels, called a rollator, which helps her feel safer while walking. She wrote in a column that her neurologist recommended using the mobility device after her lower limbs became weak and unreliable.
“Looking back, I realize that the evolution of my mindset from initially disliking rollators to wanting to improve them, to now liking mine just the way it is, has come a long way,” Munn wrote, adding she can’t imagine life without a rollator now.
Wheelchairs range from lightweight models pushed by a caregiver or propelled by the user to power chairs that use electric batteries, and specialized chairs for wheelchair sports, at the beach, or on snow.
Power chairs can be driven by a joystick, head switches, chin-operated joysticks, or sip-and-puff controllers. Some power chairs are lightweight and foldable for transport in a vehicle or on an airplane. Others can be tilted into a reclining position or support the user in a standing position. “Smart” wheelchairs, driven by computer, offer features such as collision avoidance and route planning.
In the U.S., charitable organizations can aid in the purchase of wheelchairs, wheelchair-accessible vans, and other mobility aids. Among these are national and state level charities including:
- ALS Association
- Easterseals
- Lions Clubs
- Medicaid and Medicare
- National Council on Independent Living
- The Wheelchair Foundation
- United Way
A number of veteran-specific charities may also be able to help, including:
All-terrain wheelchairs are available at several U.S. parks. The Action Trackchair models have tank-like treads that make backcountry or beach travel possible, beyond where a power chair can go. The list of locations includes parks in Colorado, Florida, Georgia, Kansas, Michigan, Minnesota, Missouri, South Carolina, South Dakota, Oklahoma, Oregon, and Wisconsin.
U.S. national parks with the all-terrain chairs include Georgia’s Kennesaw Mountain National Battlefield Park and Cumberland Island National Seashore, and Michigan’s Sleeping Bear Dunes National Lakeshore.
Communication aids
More than 80% of people living with ALS may develop speech issues, which can affect their ability to communicate in a variety of ways.
Augmented and alternative communication (AAC) devices can give people with ALS their voice back, using items that can be as simple as pen and paper, alphabet or picture boards, all the way to high-tech aids such as computer speech generators and eye-gaze devices.
Communication strategies for ALS speech problems include:
- writing, drawing, or typing on a computer keyboard
- using facial expressions, hand gestures, or American Sign Language
- voice banking, which takes recorded samples of a person’s speech and creates a synthetic voice; and message banking, in which a person records common words and phrases that can be played back on a text-to-speech device.
Eye-gaze software allows a person with ALS who has no or limited use of their extremities to navigate and control their computer or tablet by tracking where their eyes are looking. Tracked eye movements allow a person to type and convert those messages to speech, as well as surf the internet and play online games. Some systems connect to smartphones for calls and texts, and operate lights and environmental controls in the home setting.
Speech therapists can work on a person’s ability to form words, improve their breathing, and train them in the use of AACs. Treatment should be customized to the individual and their changing needs as their ALS symptoms progress.
Breathing aids
Muscle weakness in the torso and respiratory system can lead to breathing difficulties, including labored breathing. Sometimes this sensation is described as “air hunger,” as those affected can feel as if they’re gasping for breath.
Respiratory aids can be classified as noninvasive, such as a BiPap machine, cough assist unit, or suction devices; or invasive, which include surgical tracheostomy or mechanical ventilation.
A BiPap machine feeds pressurized air via a mask worn over the nose and mouth, or a mouthpiece, aiding in inhalation and exhalation.
A cough assist machine can help ensure the airways stay clear by helping eliminate mucus and other secretions from the respiratory tract. When a person breathes in, the machine provides air (positive pressure) to expand the lungs; when breathing out, the machine rapidly creates a sucking force (negative pressure) to help remove airway secretions.
Portable suction units can help remove secretions such as saliva from the mouth.
Mechanical ventilators, which help move air in and out of the lungs, are used when a person with ALS cannot breathe on their own. This can be combined with a surgical hole made through the neck to the windpipe — called a tracheostomy — with a tube placed for breathing.
A person should speak with their doctor before using a breathing aid, as they can help to decide which device is the most suitable.
Home accommodations
Adaptations can be made to the home of a person with ALS to make it more accessible and to maintain independence for as long as possible. These modifications can range from removing tripping hazards and brighter lighting to accessible washrooms, kitchen, stair lifts, and ramps.
Lowering countertops, widening doors, and making the bathroom accessible will require the work of contractors, as will installing ramps and stair lifts.
A bathroom should have sufficient space for wheelchair turning radius, and an accessible shower, with grab bars in the shower and at the toilet. Depending on a person’s mobility, a transfer lift may be needed to go from a wheelchair into the shower or to use the toilet.
Smart home electronics with voice-activated controls or input from a tablet or smartphone can help with tasks like operating lights, temperature control, and answering the door.
Beds and sleeping aids
Weakened muscles of the chest and diaphragm due to ALS can make it hard to breathe, which can worsen at night or during a nap.
Breathing naturally slows down during sleep, and sleeping prone (lying in a stomach-down position) means the diaphragm has to work harder to push away the stomach and other parts of the abdomen during breathing.
Elevating the head of the bed can assist in breathing. This can be done by placing blocks under one end of the bed frame. For more precise elevation, an adjustable bed or a hospital bed is used. Some people may find that sleeping in a reclining power chair helps with breathing.
An inflatable, alternating air mattress can help cushion a person with ALS, help with rolling over, and avoid stiffness or pressure sores.
Pillows or a foam wedge can also help to raise the head and torso into a more elevated position, helping the weakened chest muscles and diaphragm aid the lungs in breathing more deeply.
The bed itself can be outfitted with rails and a leg lifter to help get in and out of bed. A transfer board can assist in moving from bed into a wheelchair. Some people with ALS may need a Hoyer lift or a ceiling lift to get in and out of bed.
Munn talks about the first time she was unable to roll over in bed, noting her core muscles weren’t up to the task. Her solution was twofold: change both the bed sheets and her night attire to be more slippery, and to practice rolling.
“I’ve been practicing rolling almost every day for 13 years now, and I toss and turn a lot — on purpose, and with ease. I’m sleeping like a baby!” she wrote in a column that includes tips on rolling over for people with ALS.
Clothing
Adaptive clothing for wheelchair users or others with limited mobility makes getting dressed easier and offers greater freedom of movement.
Garments can be fitted with features such as snap or Velcro fasteners, magnetic buttons, pull-on pants with elastic waistbands, and one-handed zippers. The fabric tends to be breathable, lightweight, and stretchy. Seams are often sewn on the outside so as to not irritate skin, and longer seams are sewn on the back of pant legs to aid in sitting for long periods in a wheelchair.
Adaptive clothing can go over the top of braces, and other body aids and can be layered to provide access to gastronomy (feeding) tubes.
Shirts may feature hidden front or back closures to avoid having to pull them on over the head, potentially twisting joints and muscles. Velcro closures on shoes may be easier than having to tie shoelaces for people with ALS.
In recent years, more companies have started lines of adaptive clothing, with major fashion labels such as Seven7 Jeans, Tommy Hilfiger, IZ Adaptive, and Billy Footwear offering stylish and comfortable clothing.
Eating utensils
Adaptive utensils, cups, plates, and bowls can make eating easier for someone with ALS.
Examples of adaptive eating utensils include:
- cutlery with grips, or angled and bendable handles that are easier to grasp
- cuff utensil holders, or straps for utensils to hold them in place
- plates and bowls with higher sides to avoid spills, and suction or non-skid bases, or non-skid place mats
- scoop bowls with one high, curved side used to get food onto a utensil
- cups with large handles that make it easier to hold, and lids to allow sipping without spills, and weighted bases
- dysphagia cups that allow the user to tuck their chin downward to aid in swallowing.
As ALS progresses, it can make it more difficult for people to use conventional utensils; adaptive utensils can extend the amount of time a person can eat independently.
Driving aids
People with ALS who drive may wonder if they have to give up driving immediately after their diagnosis. This won’t always be the case and will be dependent on the stage of the disease.
It’s important to be assessed by the healthcare team after receiving a diagnosis, and those who are able to continue driving will need to monitor their ability moving forward, to ensure safety of the driver and others on the road.
An occupational therapist can perform a driving evaluation that looks at muscle coordination and reflexes, vision and hearing, and cognitive skills that affect driving.
ALS driving aids and vehicle modifications that can help with driving independence include:
- a disabled parking pass to park closer to buildings
- modifications to the vehicle, including hand controls for the gas pedal and brake, signals, and steering
- lifts and ramps to assist getting in and out of the car
- assistive devices to aid in buckling the seat belt.
When a person is no longer able to drive, they can use transit companies that specialize in door-to-door service to accommodate a walker or wheelchair. Ride shares, taxis, and charitable organizations that offer transportation to medical appointments are other options for getting around.
Exercise equipment
Exercise can help maintain and improve muscle strength, lung and heart capacity, and flexibility. For someone with ALS, exercise should be done in consultation with a physical therapist to develop an individual exercise plan to safely maintain mobility without overexertion, falls, and labored breathing.
Exercises for flexibility can include yoga and other gentle stretches. Yoga blocks and props can help maintain a stretch while remaining stable and comfortable. Resistance bands can be used for gentle stretches.
Aerobic exercises can include walking, swimming, and riding a stationary bike.
Swimming aids include floatation belts and jackets, hand paddles, inflatable neck and arm rings, and flotation suits. Some swimming pools have access ramps for wheelchairs or lifts to get a person in and out of the water.
Walking aids include canes, hiking sticks, walkers, rollators, and orthotic braces.
Recumbent road or stationary bikes are more stable than upright models. Some models can be pedaled by hand controls, and come in tricycle and quad wheel frame format or duo bikes, where another person aids in stability, steering, and pedaling. Cycling exercise attachments are available for wheelchairs or for use while lying down.
Moderate strength training can be done with hand weights and weight machines. Exercise should be done carefully on limbs that still have good muscle strength. Take care not to overexert, as muscles take longer to recover in a person with ALS.
ALS News Today forum co-moderator Amanda Sifford, who has the SOD1 mutation associated with ALS, recommends stretching, yoga, and meditation.
“From what I’ve read and heard from other [people with ALS], I personally would avoid challenging workouts that lead to fatigue. This would also depend on how far a person’s ALS has progressed and what they are capable of physically,” said Sifford, a school psychologist who resides in Cape Coral, Florida.
She also recommends getting exercise advice from a physical therapist who is knowledgeable about ALS and has experience with people who have the disease.
“I want to make sure I don’t cause myself to lose any strength sooner than I have to! Again, education, information, and a good medical team are essential,” she said.
ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
FAQs about ALS aids and adaptations
Using adaptive equipment puts less strain on progressively weaker muscles of a person living with amyotrophic lateral sclerosis (ALS). For example, using a cane, walker, rollator or wheelchair lessens pain on leg muscles. Pain and discomfort in upper limbs can be reduced by using adaptive equipment for eating, driving, and home assistance devices to control the temperature, music, or door openings. Pain management for ALS is typically based on a combination of approaches that include physical therapy, massage, and medications.
Mild impairment in walking can be managed with the use of a cane or hiking sticks, for a person with amyotrophic lateral sclerosis (ALS). As the disease progresses and muscles become weaker, a person with ALS may need a walker, rollator, or a manual or power wheelchair.
Adaptive equipment for breathing can help prolong life expectancy for a person with amyotrophic lateral sclerosis (ALS). Respiratory aids can be noninvasive, such as a BiPap machine, cough assist units, and suction devices, or invasive, including a surgical tracheostomy and mechanical ventilation. Elevating the head of the bed can also assist in breathing, especially during sleep.
As long as it is safe to do so, a person with amyotrophic lateral sclerosis (ALS) can drive. Regular evaluations of the skills needed for driving, including muscular control, reflex, vision, hearing and cognitive ability should be done by an occupational therapist and other members of the healthcare team. Hand controls can be added to a car, and some people may be able to purchase a wheelchair van. After a person with ALS cannot drive any longer, there are other options for transport, such as charitable organizations, accessible transit, taxis, and ride shares.
Gentle stretching such as yoga, swimming, recumbent biking, walking, light-to-moderate resistance training, and weight lifting are suitable for a person with amyotrophic lateral sclerosis (ALS). An exercise program should be set up for the individual’s needs and monitored by a physical therapist familiar with working with people with ALS.
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