Today’s blog post marks the return of our good friend Gregg Ratliff, who penned the reoccurring series “Perspectives: It’s All in How You Look at it” for us a few years ago. In 2009, Gregg’s wife Nancy was diagnosed with ALS, and he became her full-time caregiver for the next seven years. The Ratliff family turned their grief into action when they started the Kimmswick 5k in 2010, shortly after Nancy’s diagnosis with ALS.
As we approach the 10th Anniversary Kimmswick 5K in a year that has been like no other for us all, Gregg offers his perspective on how momentous events impact all of us, and how the Kimmswick 5K continues to make a difference in the lives of people with ALS. Thank you Gregg for sharing your thoughts and memories with us!
Continue reading Perspectives: Where Were You?
We are well into the dog days of summer, and here in the Midwest it has already been a hot one, with few prospects for cooler days on the horizon. Even a few minutes outside can be draining, and the prospect for fatigue is real for everyone, especially for people with ALS.
“As a long-time St. Louisan I have lived and breathed these hot and humid summers for many years, just a little more than 40! While I should be used to them by now it always seems to surprise me when spring turns to the full on summer and the air gets heavy and thick,” says Anna Zelinske, ALS Association St. Louis Regional Chapter Director of Programs and Services for Patient Care. “I think we all need to be sure we pay attention to our hydration and take the heat and humidity seriously.”
The best advice for everyone to beat the heat is pretty clear—avoid it when possible. Staying inside, ideally with air conditioning, when heat advisories are posted is ideal. But for many of us, including many of those with ALS, that isn’t always entirely possible. So if you cannot entirely avoid the heat, here are some suggestions for not allowing something uncomfortable to turn into something dangerous.
Continue reading Tips for Enduring the Long, Hot Summer
Podcast hosts do a lot of talking. It’s kind of a job requirement. Long stretches of silence don’t tend to pull in an audience for what is a near entirely audio medium. Still, the best out there strike a balance between talking and listening—really listening—to what their guests and experts have to say. This is especially true when dealing with a topic as sensitive and serious as ALS. It is a balance that Jeremy Holden and Mike Stephenson, hosts of the Connecting ALS podcast, try to strike with each episode.
“Jeremy and I always try to stay out of the way of our guests and their stories,” says Stephenson. “We can only imagine the reality of an ALS diagnosis, so as long as we can provide a platform for members of the community to share and inspire, we hope our listeners find value in each episode.”
Continue reading Asking Questions and Really Listening to the Answers—The Connecting ALS Podcast
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
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
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?
We have at times here attempted to provide a look at what living with ALS looks like. This is at times daunting as every person with ALS experiences the disease in their own unique way. What is common for all people with ALS is that there are challenges to overcome. These challenges are sometimes small, and sometimes monumental. But they are there—day-in, day-out—and must be met.
Continue reading Living with ALS—A Small Look
Sometimes getting the help you need starts with figuring out what help is out there. This is never more true that when you are dealing with a government program, like Medicare. What are the resources? Are you eligible? How do you apply? How do you know what information is reliable?
Now, for people with ALS and their families, there is a reliable, trusted resource they can turn to, free of charge. In partnership with Patient Advocate Foundation, the ALS Association has recently introduced a new resource for the ALS community: The ALS Medicare Resource Line.
Continue reading ALS Medicare Resource Line—Help with Getting the Help You Need