Perspectives: Where Were You?

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!

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Tips for Enduring the Long, Hot Summer

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.

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We Can’t Wait

We are all tired. Some of us are tired of working from home. Some of us are tired of waiting to get to work again. We are tired of cooking and doing the dishes for what seems like the millionth time. We want our kids to go back to school. We want to hug our friends. We want things to feel normal again.

We keep thinking about “when this is over….”

But ALS has no respect for COVID-19. It is not waiting patiently on the sidelines while we deal with this new interloper. Every 90 minutes, someone is either diagnosed with ALS or dies from the disease. While we are waiting for things to go back to normal, a person with ALS must face the fact that their average life expectancy is 2 to 5 years, regardless of how long this other pandemic lasts.

All of this is why we can’t wait. We can’t wait to find new treatments. We can’t wait to find a cure.

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ALS Biomarker Research — One More Reason to Hope

The ALS Association funds millions of dollars in research every year, in a variety of scientific focus areas critical to advancing the search for treatments and a cure for ALS. In the nearly 150 years since ALS was first described in 1874, the search for new treatments and a cure has been frustratingly slow. However, the last decade has seen promising acceleration in progress, and in the last few years, five genes related to ALS have been identified. The ALS Association is currently funding a total of 169 active research projects in 16 different focus areas, and for everyone involved, critical discoveries cannot come soon enough. The promise shown in ongoing biomarker research gives reason for hope.

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In Memorial—Why We Walk

It started out of necessity, really. When it was decided—for the well-being of all involved—that we would not be gathering in Forest Park for the St. Louis Walk to Defeat ALS this Saturday (June 27), our Chapter had to think about new ways to put on the event that keep the sense of community that joining together in support of those with ALS and in support of the search for a cure creates. We think we’ve created a Walk that will bring that sense of community to streets and neighborhoods throughout our region this Saturday, and we hope you’ll take part.

Among the most important parts of Walk day is the memorial banner, which lists the names of each person our Chapter served who has lost their battle with ALS and anyone who is being walked in memory of. As we won’t all be gathering together this year, we needed to find a new way to remember those who we have lost, so we created a virtual memorial banner and posted it to our Walk to Defeat ALS Facebook page.

The post resonated with many in our community, and we wanted to share it with you here as well. ALS does not stop, and neither do we. This Saturday we Walk in honor of those living with ALS and in memory of all we have lost. We hope you’ll join us.

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Still Walking for a World without ALS, Even in a World with COVID-19

We are a little bit more than a week away from the 2020 St. Louis Walk to Defeat ALS, and just a couple of days away from Father’s Day as well. Because of COVID-19, both will be different than they have been in years past, but both are still important.

As you have heard, for the safety of the people with ALS we serve, their families, our staff and supporters, the 2020 St. Louis Walk to Defeat ALS will not occur in Forest Park on June 27. We will still be walking to defeat ALS, but we will all be walking where it safe for all involved: down your street, in your neighborhood park, around your coffee table, just about anywhere you can think of. This year we are asking you to make the Walk your own.

And while we won’t all be gathered together physically this year, we will gather digitally. Starting at 9:45 a.m. on the Walk to Defeat ALS Facebook page, we’ll be sharing content about this year’s Walk and how all of you are still making a difference for people with ALS and their families. We want to see how you are “Walking Your Way” as well, so when you post about your Walk on social media be sure to use the #ALSWalkYourWay hashtag so we can share it with others.

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Asking Questions and Really Listening to the Answers—The Connecting ALS Podcast

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.”

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“This Is Where I Need to Be Right Now”—Virtual ALS Advocacy Day Still Makes an Impact on Congress

In the past, ALS Advocacy Day on Capitol Hill has been a frenetic affair. It almost has to be when groups of ALS Advocates from across the country descend on the Capitol with maps in hand, ready to weave the halls and go from meeting to meeting with Senators, Representatives, and staff to tell the story of people with ALS and how Congress can help. It is a fruitful, yet exhausting, day for all involved.

This year, however, the knock on a door was replaced by the ring of the phone. For the safety of all involved, people with ALS, chapter staff, and board members couldn’t travel to Washington D.C. for the day. As with much in our world today, the visits had to be done remotely.

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Still Finding Solutions—Care Service in the Time of COVID-19

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.

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“You made me want to live.”—How Eye Gaze Technology Can Help Keep Life Fulfilling for People with ALS

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.

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