ALS Awareness Month: Enhancing Quality of Life Through Technology

May is a time to shine a spotlight on Amyotrophic Lateral Sclerosis (ALS). ALS Awareness Month serves as an opportunity to recognize the challenges faced by those who have ALS, as well as an opportunity to highlight the role of innovative technologies in optimizing their autonomy and quality of life. 

ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord, eventually leading to muscle weakness and loss of control of body parts and functions, including the ability to move, speak, eat, and eventually breathe (The ALS Association, n.d.).  

AAC, voice banking, and environmental control units are powerful tools in enabling individuals with ALS to maintain their autonomy and dignity.  

One of the most notable advancements in AAC technology is the development of eye-tracking (or eye gaze) systems. These devices use specialized cameras to track the movement and position of the individual’s eyes, allowing them to select letters, words, or phrases by looking at the AAC device screen.  

• For individuals with ALS who have lost the ability to speak and move their limbs, eye-tracking AAC systems provide a means of communication that is both intuitive and efficient. 

An individual's voice is a part of who they are. Therefore, it can leave them devastated when they lose the ability to speak. However, AAC systems can be customized to reflect the sound of their voice.  

Voice banking allows individuals to record and preserve their natural speech before it is affected by the progression of ALS. These recordings can then be used to create personalized synthetic voices that closely resemble their own that can be used on AAC devices.  

Voice banking and message banking are invaluable resources for individuals with ALS. Voice banking allows individuals to record and preserve their natural speech before it is affected by the progression of the disease, while message banking enables them to store pre-recorded messages in their own voice for later use (The ALS Association, 2020). These recordings can then be used to create personalized synthetic or digitized voices or to communicate common phrases and expressions with loved ones using their unique voice.  

• Voice banking and message banking enables individuals with ALS to retain their unique voice after they have lost the ability to speak verbally. This not only helps them maintain a sense of identity and familiarity but also facilitates more natural and authentic communication with loved ones. 

Voice banking can be tempting to postpone due to its daunting process, time constraints, and financial constraints. However, recent advancements in technology, such as Apple's Personal Voice feature, have provided individuals with ALS with flexible options for maintaining their voice identity. Apple's Personal Voice feature allows individuals to create a custom text-to-speech voice using recordings of their own voice (Apple Machine Learning Research, 2023) 

• This feature can be particularly beneficial for individuals with ALS, as it enables them to create a synthesized voice that closely mirrors their natural speech patterns and vocal characteristics from the comforts of home with minimal time and money.  

AAC systems provide communication for individuals with ALS and have a crucial role in fostering their quality of life and autonomy. Environmental control units (ECUs) allow individuals to control various aspects of their environment, such as lighting, thermostats, appliances, and electronic devices, using technology that is integrated into their AAC system (Disabilities, Opportunities, Internetworking, and Technology Center, 2022) 

• By using switches, buttons in their AAC system, voice commands, or other input methods, individuals with ALS can independently perform tasks that would otherwise require assistance, thereby promoting autonomy and improving their overall sense of well-being. 

Despite the transformative potential of AAC, voice banking, and ECUs, access to these tools remains a challenge for many individuals with ALS. Cost barriers, limited insurance coverage, and a lack of awareness about available tools and resources often prevent people from accessing assistive technologies that can improve their quality of life.  

Forbes AAC is an advocate for ALS awareness. It is crucial to not only promote understanding of the disease itself but also to advocate for policies and initiatives that ensure equitable access to these life-changing technologies for all individuals with ALS. 

During ALS Awareness Month and beyond, it is crucial to stand in solidarity with the ALS community and acknowledge the role of AAC, voice banking, message banking, ECUs, and innovative technologies in empowering individuals with ALS to continue communicating, connecting, and living life to the fullest.  

• By raising awareness, supporting research efforts, and advocating for accessibility to necessary tools and resources, society can contribute to ensuring that all individuals affected by ALS have the tools and support they need to lead fulfilling lives. 

References 

Apple Machine Learning Research. (2023, December). Advancing Speech Accessibility with Personal Voice. https://machinelearning.apple.com/research/personal-voice 

The ALS Association. (2020, June 10). FYI: A Guide to Voice Banking Services. https://www.als.org/navigating-als/resources/fyi-guide-voice-banking-services 

The ALS Association. (n.d.). What is ALS? https://www.als.org/understanding-als/what-is-als 

Disabilities, Opportunities, Internetworking, and Technology Center. (2022, May 22). What are Environmental Control Units?. What are environmental control units? | DO-IT. https://www.washington.edu/doit/what-are-environmental-control-units