Study on Mindfulness and Self-Compassion for People with ALS Offers a Path to Living Life as They Choose

Just breathe. It’s advice we’ve all been given at one time or another. Beyond the obvious physical need we all have to take in oxygen and emit carbon dioxide, the advice to “just breathe” is often a call to stop for a moment and just be aware of the act of breathing to re-center, re-focus, and re-set.

For people with ALS, such seemingly simple advice comes with its own set of emotional baggage, as ALS slowly robs a person of the ability to “just breathe.” Still, the idea behind the advice might have far reaching benefits for people with ALS in ways you might not imagine.

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Benefits of Palliative Care for People with ALS

Today’s blog post is by our intern Bradie Schoemehl, who explains what palliative care is and why it can be beneficial for people with ALS.

By Bradie Schoemehl,

Anyone affected by ALS knows that the loss of the everyday things in life is one of the hardest obstacles to face when battling this disease. The walks around your favorite park are no longer possible; losing the ability to have weekly anticipated outings with family and friends; no longer being able to reach out and grab the hand of a loved one. A person with ALS and their family do not need to face these challenges alone, which is why a palliative care team is so important. Facing this disease head-on is made easier when patients are not only surrounded and supported by loved ones, but also by a dedicated team of professionals. It is the goal of palliative care that patients’ wants and wishes are respected, quality of life is a top priority, and what can be controlled will be controlled.

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Finding a Way—Occupational Therapists Are the Problem-Solvers of the Multi-Discipline ALS Treatment Team

There are times, for whatever reason, when the English language can be confounding. The examples of everywhere. We drive on a parkway and park on a driveway. This can apply to professions as well. Take for example, occupational therapy. That has to do with work, right? After all, “occupation” is right there in the name. And that’s correct, but only to an extent, because the role of an occupational therapist is that and so much more. In broad terms, occupational therapy focuses on a person’s ability to perform activities of daily living—to live life to its fullest. For people with ALS, an occupational therapist (or OT) is there to help patients maintain their independence for as long as possible as well as to improve their quality of life. The work an OT does can take on many forms as we’ll soon see, but in some ways their role can be summed up by this quote from the movie Patch Adams: “You treat a disease: you win, you lose. You treat a person, I guarantee you win—no matter what the outcome.”

April is Occupational Therapy Month, and what better way to mark the occasion than to hear from someone who knows the role of an OT inside and out: our Associate Director of Care Services Melissa Smith, who just so happens to be a licensed OT.

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What a Year It Has Been

There is no doubt, 2020 will be a year not soon forgotten. We all have had our lives turned upside down in ways big and small, and we are all hoping for 2021 to turn things right-side up.

And while 2020 has been for many a year we’d be fine forgetting, there has been much worth remembering for our Chapter and the ALS community. For while 2020 has been a struggle, we are inspired by those who have struggled to overcome the obstacles in the path. And we are reminded that for people with ALS the struggle never ends. ALS does not stop for global pandemics, or for the challenges created by them.

Like so many others, when the scope of the COVID-19 pandemic became clear, our Chapter was forced to reimagine how to provide services to the community we serve. Our Care Service team worked with our partners to find new and different ways to meet the needs of people with ALS. Visits that would normally have been in person now took place over the phone or internet. Here on ALS Connect, we tried to keep you informed about how we and others in our community we meeting these challenges each and every day.

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Staying Power—SLU Clinic Celebrates 15 Years as an ALS Certified Treatment Center of Excellence

Time has a way of sneaking by when we aren’t looking; not the day-to-day so much, but the sliding of the calendar from year-to-year. What seemed like just a few years ago suddenly is a decade more in the rearview mirror as we zoom on to what’s next.

Think back to 2005—not that long ago, right? You might think things were not that much different then; not that long ago. You might hop on YouTube to see what happened back then, but if you did that back then, you would have been cutting edge: YouTube wasn’t a thing until February of 2005. And hopefully you were a college student back in 2005 if you want to see what was happening on Facebook, since it didn’t open up to the general public until a few years later. And of course if you were doing any Googling for “what happen in…” back in 2005 you were likely doing it from your desktop, as the first iPhone didn’t come out until 2007.

But while the world is different now as opposed to 2005, some things aren’t. In 2005, the SLUCare ALS Clinic was recognized as an ALS Association Certified Treatment Center of Excellence, and remains so to this day. This certification means that a clinic meets rigorous clinical care and treatment standards, participates in ALS-related research and has successfully completed ongoing comprehensive site reviews. Nationwide, there are only 72 ALS Association Certified Treatment Centers of Excellence.

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Navigating Medicare Open Enrollment: What’s the right plan for you?

Medicare’s annual open enrollment period for health and drug coverage has begun and will continue through December 7, 2020. This time period allows those eligible to sign up, and those enrolled to change their selected Medicare health/prescription plan for the following year. It can be difficult to navigate, but the decisions you make during this period are critical, and you deserve to understand exactly what’s available.

As we approach the open enrollment deadline, we want to cover some Medicare basics, what this period means for people living with ALS, and resources available to select the right plan for you.

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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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