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
This week we continue our “Chapter & Verse” series where we allow you to get to know the people who make up the ALS Association St. Louis Regional Chapter a little bit better. Today we hear from Care Service Coordinator Lori Dobbs, who has been with our chapter for 10 years.
Continue reading Chapter & Verse: Lori Dobbs
This week is Feeding Tube Awareness Week, and in light of the fact that many people with ALS will have to face the decision of if or when to have a feeding tube placed, we asked Care Service Coordinator Mary Love, who is a registered dietician, some questions about the ins and outs of feeding tubes:
Continue reading What Should You Know About Feeding Tubes?
This week we are starting a new series with the hope of allowing you to get to know the people who make up the ALS Association St. Louis Regional Chapter a little better. We are calling it “Chapter & Verse” because every person’s life is a story. This week we hear from Care Service Coordinator Mary Love, who joined the Chapter last spring.
Continue reading Chapter & Verse: Mary Love
As 2020 begins in earnest with the first full work week, we asked our Board Chair Josh Rogers to share some thoughts on the upcoming year. Here is Josh’s message for us all:
The ringing in of each new year brings with it hope. When the ball drops and fireworks fill the sky on New Year’s Eve, when we hang a new calendar on the wall and open it to January, when we walk through the front door at work on the first business day of the new year, we press the symbolic reset button on life. We put behind us the challenges and neglected resolutions of the year before and welcome with optimism the next 12 months.
Continue reading Wishing You a Hopeful New Year
It’s the time of year where you almost can’t help looking back. In a few short days 2019 will be no more. The year has been one of milestones and new beginnings for us here at the ALS Association St. Louis Regional Chapter, and while we are looking back we wanted to include you and remember what a year it’s been.
Continue reading The Year That Was—Looking Back
Melissa Smith, MSOT,
OTR/L, joined our team as Associate Director of Care Services this September. Before
joining the ALS Association St. Louis Regional Chapter, Melissa spent the last
14 years working at Paraquad, most recently as the Manager of the Health and
Wellness Center. She is an Occupational Therapist and has experience working
with people with a variety of disabilities, including ALS. Here in her own
words she shares her journey as well as what occupational therapy can mean to
people with disabilities and caregivers.
Continue reading Meet Our New Associate Director of Care Services