Adapting Your Way Through ALS

Aimee Mattes, OTR/L, CLT-LANA

ALS symptoms can present challenges to performing day-to-day tasks. While each person’s journey is different, many will experience some combination of weakness in the upper body, core, and lower body, difficulty breathing, or cognitive difficulty that impacts activities such as getting dressed, bathing, preparing a meal, or participating in leisure activities. Adapting some of these tasks or simplifying harder tasks can allow individuals to continue performing these tasks independently or with minimal assistance for a longer period of time. 

An adaptive strategy can be described as using an alternative method to ‘get the job done’.  The identification of the need for adaptations frequently comes out of necessity and the firsthand experience of the individual. An Occupational Therapist (OT) is skilled in evaluating someone’s strengths and areas of difficulties to come up with solutions and strategies to help with participation in those activities that are of particular importance to the individual.

There are pros and cons to adaptive equipment. For example, adaptive equipment can help reduce the energy required and allow performance of a task more independently or with less effort. However, due to continued disease progression, an adaptive strategy or device may be helpful only for a period of time, or adjustments may be required when symptoms change. An Occupational Therapist can help to determine the best strategies as your symptoms or abilities change. While adaptive equipment can be very helpful in modifying what is needed for a task, not all commercially available adaptive equipment will work for everyone due to individual needs and abilities. It is always best to consult with an occupational therapist whenever possible before obtaining adaptive devices. The ideas and items listed below are some examples of what is available to assist with important activities, and can be helpful in your discussion with your occupational therapist. 

Difficulty holding objects

If you are experiencing weakness in your hands or a weak grip, you can build up the width of a handle so that it is easier to hold onto the item. This can be accomplished through various methods such as cylindrical foam, self-adhering tape (Coban), rubber bands, or commercial cuffs. The concept of making a handle wider can be trialed on almost any item, including utensils, hairbrush, comb, writing instruments, or toothbrush. Handles of items used in leisure activities can also be adapted with larger handles. Golf clubs, gardening tools, and crafting needles can all be made easier to use by making the handles larger and easier to grip.

Built up eating utensils are commercially available that are manufactured with larger handles incorporated into the design. A rocker knife uses a rocking motion to make cutting food easier and is available with different types of handles to make gripping easier. An ergonomic knife helps the user to cut using a sawing motion.

If a larger grip is not helpful, something called a universal cuff may be beneficial. A traditional universal cuff fits over the palm with a Velcro strap and holds the utensil for you. The EazyHold is a thin silicone strap that can be used for a variety of activities.

Difficulty reaching

If you have back pain, limited flexibility, decreased balance, or difficulty reaching certain body parts, long handle tools can be helpful. Some examples include: 

• Long handle sponge for washing legs or back
• Long handle comb or brush to reach head
• Freedom Wand for hygiene such as wiping, shaving, and washing 
• Sock aid for getting socks on
• Reacher to help get pants on over feet or to reach items dropped on floor
• Long handle shoehorn
• Long handle gardening tools

Adaptive Equipment and Strategies for Dressing

There are a variety of adaptive devices to make it easier to get your upper body and lower body dressed. Some examples include:

• Adaptive elastic or silicone shoelaces, Lock Laces, or “no- tie” laces that allow shoes to slip on
• Slip on shoes (Brands such as Kizik, Sketchers, Zebas)
• Shoe funnel
• Using a reacher to help with lower body dressing
• Button hook and zipper pull 
• Adapt clothing such as magnet or velcro closures
  • Adaptive clothing lines such as Silverts, Tommy Hilfiger, Target, Zappos, and No Limbits
  • Local tailor may be able to modify personal clothing

Adaptive Equipment for Bathroom Needs

Some examples include:

• Electric toothbrush
• Electric toothpaste dispenser
• Electric liquid soap dispenser
• Electric razor
• Bidet for ease with hygiene after using the toilet
• A toilet aid such as the Freedom Wand or Bottom Buddy
• Long hose shower head
• Commode over the toilet or a raised toilet seat with handles 
• Grab bars around toilet and shower
• Shower chair with back support to help conserve energy and prevent falls
• Tub transfer bench with sliding or tilting options 
• Shaving shelf to place foot on in shower. This can also be mounted higher for elbow support while washing hair 
• Hair dryer stand
• Silicone body or hair scrubber

Adaptive Equipment for the Kitchen

Some examples include:

• Pizza cutter (wide handle) can be used to cut lettuce, sandwiches, and other items.
• Electric jar/can opener
• Electric mini chopper/Vegetable chopper
• Lazy Susan in the fridge or cabinets can make it easier to reach frequently used items
• Dycem is a non-skid pad that can be used in versatile ways such as to open jars, medication bottles, or placed under a plate or bowl to prevent these items from moving while you eat
• A plate guard can make scooping food easier and prevent food from sliding off the plate
• Adaptive cutting board 

Assistive Technology

Smart technology can automate many tasks in the home. There is a wide range of complexity and pricing for these devices, but you may already have some of this technology in your home and can easily reconfigure it to assist with tasks while moving about your home. Examples include:

• Digital assistants such as Alexa or Google Home 
• Smart Watch to make calls/texts and for Fall Detection
• Automatic lights
• App for managing garage door access
• Keypad door lock allows you to manage remotely
• Obi adaptive self-feeding device

Sometimes it can feel overwhelming to determine what adaptive solutions or equipment might be right for you or your loved one. Keep in mind that there is no ‘one size fits all’ solution. While some of these adaptations seem simple and straightforward, a custom solution for your particular situation may involve specific devices or training a family member or caregiver to support the activity. An Occupational Therapist is an integral part of your team and can help to identify barriers to your participation in important activities and to find solutions that are appropriate for your individual situation. If you are not connected to an occupational therapist, you can ask your doctor for a referral, ideally to an OT who is trained and experienced with neurological and neurodegenerative diseases. Following consultation with your OT, there are some excellent resources for obtaining adaptive devices. Some may be available through the ALS United Greater Chicago equipment lending closet. If the items are not available for loan, there are some reliable online vendors, such as

The Wright Stuff  https://www.thewrightstuff.com/

North Coast Medical  https://www.ncmedical.com/

Amazon    https://www.amazon.com/