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
No doubt, this is a May like no other. But at the same time, the world continues, and as we mark May as ALS Awareness Month, we take this opportunity to remind our larger community what our ALS community knows all too well: that even with all the uncertainty and unrest caused by COVID-19, ALS doesn’t stop, and neither do we as we work to support our ALS community as they face new and existing challenges.
Because of the need for extreme social distancing during this pandemic, people with ALS and their caregivers have no choice but to take extraordinary precautions and isolate themselves nearly completely. This means they are at risk of losing access to services that are traditionally delivered in person at their homes or in a clinic. Our Care Service team has been working to bridge this connection gap by reaching out by phone and video conference, and by ensuring people with ALS have access to their clinic staff in whatever way makes sense for them. Even as we have been working remotely, our staff has been in constant collaboration around how to best serve our community and how we can prepare for the time when can once again gather together.
But even though we are still mostly at home, you don’t have it sit this ALS Awareness Month out. There are many way you can have an impact on our fight to end ALS.
Continue reading An ALS Awareness Month Like No Other
It seems like it was long ago, but in reality it’s only been a couple of months or so since things were “normal” for most of us. Schools were in session, most of us were actually “going” to work in person, and we were all waiting for spring to arrive.
And then everything got turned upside down. Event after event was either canceled, or postponed, or changed in some way to ensure the safety of all. We’ve all done what we needed to do.
And just like that much that was to be in-person became virtual, including the annual Jim Schoemehl 5K Run, being held this Saturday. The run will still be held—and you can still participate—but it will all be held virtually.
Continue reading A Virtual Story for a Virtual Run—How We Can Still Connect When We Are Apart
For many of us, among the most difficult parts of the “Stay at Home” orders we face because of the COVID-19 crisis is the isolation. We miss going out wherever we want, doing whatever we want, seeing whoever we want to see. It is unusual, and uncomfortable, and more than a few of us are going more than a little stir crazy because of it.
But for people with ALS, much of this is all too familiar. The isolation and “self-quarantine” we are trying to deal with is every day for them. A member of our staff recently saw a post on Facebook from one of the families we serve that brought this home to us in very personal way. We reached out to them and here, in the words of Summer Nolen, is the story of her father Kent and their family:
Continue reading For Most of Us, Our Current Isolation Will End. For People with ALS, it Is Every Day
Right now, it can be hard to think much about the future. We are locked in on the now, and what current events mean for our family and loved ones. Right now, it can be hard to think that the future, with all the thoughts and worries of everyday life, is coming and that time does not stand still. There will be a spring, summer, and fall. Students of all ages will return to classrooms and campuses, and the financial burdens of college will be there as well.
But for students whose lives have been impacted by ALS, there is the Jane Calmes ALS Scholarship Fund, which was established in 2019 to support the post-high school education for such students. The ALS Association is now accepting applications for year two of the fund. Applications for this year’s scholarship awards, which will be distributed for the fall 2020 and spring 2021 semesters, are being accepted through May 18, 2020.
Continue reading Living the Now but Thinking of the Future—The Jane Calmes ALS Scholarship Fund Kicks Off Year Two
The ALS Association St. Louis Regional Chapter understands that many of those we serve—people with ALS, their families and supporters—may have questions and concerns related to the spread of the Coronavirus, known as COVID-19. We are closely monitoring national government health agency guidance on taking measures to protect our staff and you. Our highest priority is the safety and well-being of people with ALS, their families and caregivers, and our staff.
Continue reading Important Information About Our Chapter and the Coronavirus