Flexibility is always a virtue when serving people with ALS. No two situations are ever the same, and no two people with ALS need exactly the same things to fight the disease. So those who care for people with ALS go into every meeting with a family facing ALS knowing there isn’t a one-size-fits-all solution they’ll be able to provide. And every doctor or nurse who treats a patient with ALS knows finding the right way to meet the needs of an individual patient requires flexibility.
So when the COVID-19 pandemic began impacting the nation and our community, our Care Service team and the staff at the ALS Clinics we support did what they are used to doing: they assessed the situation, they remained flexible, and they found the best solutions possible.
Continue reading Still Finding Solutions—Care Service in the Time of COVID-19
On September 25, 2006, one year after Hurricane Katrina ravaged their home city, the New Orleans Saints took the field at the newly-reconstructed Superdome for one of the most memorable NFL games in franchise history. The team’s safety, Steve Gleason, helped secure their victory when, early in the first quarter, he blocked a punt by the Atlanta Falcons in a play that would one day be immortalized with a statue outside the stadium, a symbol of the city’s rebirth after the devastating storm.
Steve Gleason now lives with ALS and has lost much of his muscle control. The former NFL hero can no longer move or speak and needs assistance to eat and breathe. However, in Gleason’s own words, just as the city of New Orleans “had no plans of fading away quietly and disappearing,” neither does he. Gleason uses a tablet equipped with eye gaze technology and a speech generating device to communicate. The words he types with his eye movements can be selected to be spoken, emailed, and even texted. He can also do things such as pay bills, set a budget, write articles, and much more. In 2019, Gleason even helped launch a wheelchair system that can be controlled using eye gaze technology.
“This technology is life-sustaining, and it allows me to be independent and productive. In a sense, this tablet is a cure for me,” Gleason wrote in 2014, three years after his diagnosis.
Continue reading “You made me want to live.”—How Eye Gaze Technology Can Help Keep Life Fulfilling for People with ALS