ALS is a devastating disease for both people living with ALS, caregivers and loved ones. Every person affected is different and ALS presents in various ways. It can cause loss of motor function in muscles from their legs, their arms, in the mouth and jaw, among other muscles that eventually leads to total paralysis. Ultimately, ALS affects their diaphragm leaving people unable to breathe on their own. Assistive technology can include a variety of tools and devices that improve quality of life for such as communication devices that allows people with ALS to communicate with ease, despite all their limitations.
Examples of communication devices:
- Speech generating devices (SGD’s): electronic devices that synthesize speech.
- Eye gaze control systems: devices that use eye movement to select letters and words on a computer to synthesize speech.
- Writing tablets: devices used to communicate when people still have the ability to write.
- Brain computer interface (BCI): a system that allows a person to control a computer or other electronic devices using only his or her brainwaves, with no movement required. They can be used for communication, computer access or to control devices such as a wheelchair and prosthetic arms, among other applications.
- Text to speech computer software programs: programs that consist of an on-screen keyboard and mouse that allows use without needing a person’s hands.
- Text to speech apps: apps for use on smart phones or tablets that convert text to speech.
- Voice banking systems: devices that allow people with ALS to store the sound of their voice and recorded words and phrases before they lose their ability to speak.
Communication devices are categorized into two segments: dedicated and undedicated. A dedicated device is strictly a communication device in that the only function it performs is speech generation. Undedicated devices, which are computer based, not only speak, but also feature all the functions of a regular computer, such as word processing, email, internet access, among other applications.
What The ALS Association is Doing
In 2015, The ALS association partnered with Prize4Life and held a workshop with leaders in the field to identify areas in assistive technology that would benefit most from further investment. There was consensus amongst the participants that the area of communications would significantly benefit. This meeting led to the ALS Assistive Technology Challenge. In addition to the Challenge, The Association is funding a postdoctoral fellow to develop a robotic limb.
Why It Matters
Assistive technology is a means to help improve the lives of people with ALS. Communication devices allow people with ALS to communicate with more effectively when they can no longer communicate on their own. This helps people become more independent, communicate medical decisions, and overall become a more active participant in their family and community. Assistive communication devices can be life changing in that people go from very little to no ability to speak to the ability to communicate again. In addition, access to the Internet through email and chat rooms provide a medium to find and meet others in the same situation to vent their frustrations and support each other.
Caregivers and loved ones can also benefit from the advances in assistive technology, by making life easier and less stressful both physically and mentally. For example, there are many smart phone apps that assist them, such as apps designed to provide pill reminders and give advice on caring for a loved one with ALS.
Alisa Brownlee, The Association’s Clinical Manager of Assistive Technology, has been serving both the National Office and the Philadelphia Chapter for over 18 years and is an expert on assistive technology. For questions surrounding assistive technology, contact Alisa (see below).
Other sources for information regarding assistive technology click here.