There’s a wide range of equipment and technology that can improve mobility and help manage ALS symptoms as the disease progresses. These devices can make it easier for ALS patients to get around their homes, speak, and perform day-to-day tasks like bathing and going to doctor’s appointments, which makes life easier for both the patient and their caregiver.
Because every ALS patient is a little different, it’s hard to say exactly when each patient will need each assistive device, but we recommend installing a wheelchair ramp and purchasing an SGD (Speech Generating Device) device before either is necessary. Getting used to this equipment and incorporating it into your daily routine can be challenging, which means you should give yourself time to adjust to these additions to your home and daily life.
If you are having difficulty obtaining many of these devices, financially or otherwise, please contact your local Care Services Manager. We can help you find the right retailers or professionals, or you may be able to take advantage of our Equipment Loan Program.
When an ALS patient can no longer walk, a power wheelchair can restore a great deal of mobility. Medicare and some insurance policies provide coverage for ALS patients who need power wheelchairs. Depending on your area, you may be able to purchase your power wheelchair from Numotion, NSM Seating or Travis Medical. If you need more assistance with sourcing your power wheelchair, please contact your local Care Services Manager.
Once navigating the home becomes difficult, wheelchair ramps are often a necessary home modification. Wheelchair ramps can range from inexpensive portable ramps to a complete remodel of entryways, patios, and doors. Federal law requires that apartment buildings and other multi-unit homes are constructed with basic accessibility in mind, but cramped spaces and other barriers may still exist. For more information about making your home more accessible, please contact your local Care Services Manager.
Most ALS patients will experience difficulty with speech and movement as their illness progresses. Some patients will ultimately lose the ability to speak and use their hands, which can be both frustrating and emotionally devastating. Using alternative and augmented communication (AAC) devices can greatly improve a patient’s quality of life. (When Medicare began paying for communication devices in 2001, they decided to refer to AAC devices as SGD’s—Speech Generating Devices. The acronyms are interchangeable). SGD includes systems such as sign language, symbol or picture boards, and electronic devices with synthesized speech.
Although the same systems can be used for either augmentative communication or alternative communication, there is a difference between the two. Augmentative systems are used by people who already have some speech but are either unable to be understood, or have limited speaking ability. These other modes of communication are used to support, or supplement, what the person is able to say verbally. Alternative communication is the term used when a person has no speech. These people must completely rely on another method to make all their ideas, wants, or needs known.
Electronic communication devices are used by anyone who can’t make themselves verbally understood. Many different electronic communication systems are available. Some communication systems are custom-designed for a specific user or can only be used in specific situations. For example, a communication system that works through a desktop computer cannot travel with the patient to doctor visits, but a laptop or notebook computer is more portable and will allow the system to travel with the patient.
To find out how to work with Medicare or your insurance provider to obtain a SGD, please contact your local Care Services Manger.
There are a variety of eye-gaze devices that can improve the lives of people living with ALS. These devices use eye movement to “activate” a letter, word, or phrase on a computer screen, which can then be spoken by the computer for communication purposes. To use eye gaze devices, the patient needs to be able to use the muscles that control upper, lower, and lateral eye movement. These devices are typically used once other SGD devices are no longer useful. If your disease has progressed to the point of needing an eye-gaze device, Medicare and some insurance policies may cover a majority of the costs associated with purchasing an eye-gaze system, and of course, our Care Services Managers can always help.
When ALS begins to affect the muscles that control breathing, respiratory assistance will become necessary. There are a number of technologies, including breathing pacemakers, that can help ALS patients breathe. Both surgical and non-invasive respiratory aids are available, and your physician can help you determine which is best for you. For more information on respiratory aids, please contact a Care Services Manger in your area.