A Comprehensive Rehabilitation Team Is Key
While considered a rare disease, an average of 15 individuals in the U.S. are diagnosed with amyotrophic lateral sclerosis (ALS) each day. Also known as Lou Gehrig’s disease, ALS is a degenerative neurological disorder affecting the nerve cells in the spinal cord and brain.
Research indicates that a number of individuals with ALS have unmet needs for assistive technology devices. Assistive technology can refer to any equipment or product that helps individuals with disabilities to improve functional capabilities. It can benefit both the individual and their family. For example, assistive technology can enable individuals to communicate on a speech generating device using their eye gaze,stringing together a series of letters to create a full sentence. Individuals can also control a computer with their brainwaves.
Learn more about the new and emerging technologies for ALS, and how your rehabilitation team can help you access these resources.
The Role of Rehabilitation
ALS attacks the neurons that send messages from the brain and spinal cord to your muscles. As these motor neurons degenerate, they stop transmitting messages to the muscles. Over time, the muscles weaken, atrophy (waste away) and twitch.
In addition to comprehensive medical treatment, people with ALS often receive rehabilitation with assistive technology. Stephanie Bay, PhD, CCC-SLP, a speech-language pathologist at the ALS Assistive Technology and Rehabilitation Clinic at Marianjoy Rehabilitation Hospital, part of Northwestern Medicine, explains how therapy that incorporates assistive technology is essential to helping indviduals with ALS. “Rehabilitation for individuals with ALS differs from the traditional model used for other diagnoses. ALS is progressive, so it requires a different specialized approach,” says Dr. Bay.
Making a Difference with Assistive Technology
Physical therapy can equip you with a wheeled mobility system, such as a power wheelchair, while occupational therapy can help you to use everyday resources, such as your phone or computer. Your speech-language pathologist focuses on your swallowing, helping ensure your safety while consuming food, and your communication needs. For this, technology often plays a crucial role.
Examples can include:
- Eye gaze control systems, which use eye movement to create sentences and synthesize speech
- Brain-computer interface, which allows a person to control a computer with their brainwaves
- Writing tablets
- Text-to-speech computer systems
- Speech banking systems that record your voice so that in later stages of the disease, you may continue to speak in your own voice
- Voice amplification systems
If you’re caring for someone with ALS, you’ll need support too. Rehabilitation specialists can teach you strategies to support communication, safely transfer and lift your loved ones, and assist with self care. “These resources can be life-altering. For example, without knowing how to safely transfer your loved one, she may be isolated or stuck at home,” says Dr. Bay. There are also support groups available for caregivers.
And, while there is no cure for ALS, Dr. Bay has witnessed a significant evolution in the options available for those diagnosed with ALS. “Since my first patient more than 10 years ago, technology has come so far,” says Dr. Bay. “And it’s only going to get better.”