Proper Nutrition for People with ALS

Keeping up with the calendar can seem like a daunting task even when just thinking about the normal flow of the year. Halloween is right around the corner, and even thought it doesn’t seem possible Christmas decorations are up for sale already. Sure, sometimes the days seem to creep by, but at the same time the pages of the calendar can seem to fly off. Add to that the various “awareness” weeks and months and you need a calendar just to keep track of the calendar, if that makes any sense.

But there are times when we should stop and consider that many of these issues we are asked to be “aware” of are really important, some even more so to people with ALS and their families. So as we note that this is Malnutrition Awareness Week, we asked Care Service Coordinator and Registered Dietitian Mary Love to share some thoughts on nutrition for people with ALS.

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ALS Virtual Town Hall Brings Community Together

In a lot of ways, the origins of the “town hall” meeting are uniquely American. Sure, community gatherings have been happening from the time there have been communities to gather, but since the early days of colonial America, the gathering of a group of concerned individuals to be updated on current events has been a time honored tradition that persists to this day across the country. The idea has become so much a part of us that we don’t think twice that “town hall” can easily refer as much to a meeting as it does to a building.

But just because the town hall concept is old doesn’t mean it has stayed the same, and in 2020 when nothing seems normal the concept has had to evolve even more. What might have in the past been in-person gatherings have become virtual, expanding the scope and reach even further. But the basic idea of gathering a community to be updated on current events remains.

In just such spirit, our Chapter hosted a virtual town hall meeting in September to discuss the current state of ALS care services, research, and advocacy. Members of our community were able to hear from experts in these areas and ask question to the speakers. The full 90 minute recording is available for all to view.

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Communication Is Key—Speech Language Pathologists Find Ways to Help

Humans have an innate need to communicate. And our use of language is unique in the animal kingdom. It is, to some extent, what makes us human. It is among the signposts in our evolution. Parents remember the where and when of a child’s first words. Before there were books—or even written languages—stories, wisdom, and culture was passed from generation to generation through the spoken word.

For people with ALS and their families, keeping communication going is very important to everyone. While no two cases of ALS are the same, many people with ALS will encounter difficulties with speaking as the disease progresses, with many losing the ability to speak entirely. These challenges with speech and communication can progress quickly or slowly, and are among the emotional taxing issues a family living with ALS must face.

Given the importance of communication to us as humans, finding ways to keep communication going is an important part of treatment for a person with ALS. While doctors and ALS Association care service coordinators are an important part of that process, often times the expertise of speech language pathologist (SLP) is invaluable.

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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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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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Chapter & Verse: Lori Dobbs

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.

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What Should You Know About Feeding Tubes?

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:

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Chapter & Verse: Mary Love

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.

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Wishing You a Hopeful New Year

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.

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