Amyotrophic lateral sclerosis, or ALS, is a progressive neurodegenerative disease also known as Lou Gehrig’s disease. It’s estimated that over 6,000 people in the U.S. are diagnosed with ALS every year, and 20,000 people live with the disease at any given time. In honor of ALS Awareness Month, we’re sharing stories about living with ALS from our award-winning membership magazine, New Mobility.
Smart Homes Get Smarter
When living with ALS, technology can be the key to independence and quality of life. Fortunately, there are a bevy of new home automation technologies available for every budget and level of function. From a $150 voice controlled Amazon Echo to $6,000+ whole home systems that can be controlled via eye scanner, environmental control units can now automate everything from lights to televisions, computers, and even coffee makers.
Faith and Mystery
For Phil Simmons, a professor at a small Midwestern college, being diagnosed with ALS was a spiritual wake up call. In this timeless interview, Simmons discusses his book Learning to Fall: The Blessings of an Imperfect Life, and how accepting mortality can lead to a fuller life. For Simmons, spirituality was not about reaching for some perfect, unknowable afterlife, but rather, about learning to find sacred moments in everyday life.
Steve Gleason Act Improves Access to Eye Tracking Technology
For those living with ALS, being able to communicate can require complex, expensive technology. Recent legislation, championed by a former NFL player with ALS, Steve Gleason, helps to provide greater access to eye tracking technology by ensuring that it will be covered by Medicare.
Jason Becker: In Rare Company
Jason Becker was a guitar prodigy who could play everything from classical to speed metal before he’d entered high school, and was touring worldwide by the age of 16. At 20 he was named “Best New Guitarist” by Guitar Magazine, and signed on as lead guitarist for David Lee Roth. When he was diagnosed with ALS, Becker was forced to give up his guitar. More than 25 years on, with the help of a close-knit team of family and friends, Becker continues his dream by composing music that touches fans from around the world.
Living with ALS: No Longer Afraid of the Beach
In this personal story, Mike Marsala reflects on learning to live with ALS: to adapt to an ever changing level of function, to live without fear and put his toes in the sand, and to “not allow my disability to become a handicap.”
Ways to Give
Learn how you can help United Spinal Association assist people living with ALS and other spinal cord injuries and diseases.