Dispatches From a Former Caregiver—Have You Heard Venice has A LOT of Canals?

Today’s blog post is the first of in a recurring series from our friend Scott Liniger, who was an ALS patient caregiver for his partner Tammy Hardy for six years. In his series “Dispatches From a Former Caregiver” Scott hopes to explore the parts of his and Tammy’s story that tend to the, shall we say, more irreverent side of their journey.

Tammy Hardy lost her battle with ALS in 2008. She was 39 years old. She was diagnosed with ALS six years earlier, at the age of 33. After her diagnosis, she had a cadre of caregivers, including her sisters and brother, her parents, her partner Scott Liniger, and his parents and family. Since her death, Scott has been a member of the St. Louis Walk To Defeat ALS committee, and participates and fund raises for Walk Team Tammy Hardy, along with Tam’s sisters, Kelly and Keri (and lots of family and friends).

Continue reading Dispatches From a Former Caregiver—Have You Heard Venice has A LOT of Canals?

ALS and Respiratory Health—Asking Hard Questions, and Getting Important Answers

The range of emotions someone faces with an ALS diagnosis are as unique as every person is. But while no two people experience exactly the same range of feelings or thoughts, there are some common themes, among them a desire to understand what the future will hold.

For Ken Menkhaus, that meant turning his analytical mind to the task of better understanding ALS. A husband, father, professor of political science and member of The ALS Association national Board of Trustees, Ken was diagnosed with ALS in 2018.

Among the issues Ken wanted to understand better was the impact ALS has on breathing. With the hopes of sharing what he learned with others facing ALS, Ken allowed The ALS Association to bring cameras along on his fact-finding journey to understand more about the impact of ALS on his respiratory health and the kinds of decisions he and his family will face as the disease progresses.

Continue reading ALS and Respiratory Health—Asking Hard Questions, and Getting Important Answers

The COVID-19 Vaccine—What You Should Know

It is fair to say that there has been much enthusiasm about safe and effective vaccines for COVID-19 being developed quickly and being distributed across the country. It is also fair to say that there has been more than a little confusion about how the vaccines are being distributed, and how and when they will be available to people from various communities, including for people with ALS.

In an effort to provide the most current and reliable information available, the National Organization for Rare Disorders (NORD), in partnership with The ALS Association, Cystic Fibrosis Foundation and Muscular Dystrophy Association, will host a special webinar with leaders from the US Food and Drug Administration (FDA) and the Centers for Disease Control (CDC) to discuss the COVID-19 vaccines with the rare disease community. The webinar is Friday, January 15, from 1 – 1:45 p.m. CT. The webinar is free, and you can register here: https://bit.ly/Vaccine-Webinar.

Continue reading The COVID-19 Vaccine—What You Should Know

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.

Continue reading Proper Nutrition for People with ALS

Assessing the Financial Burden of ALS—FOCUS Survey Results

The emotional costs of ALS put a strain on every family who must face the disease. But even while a family faces these challenges, the financial costs of ALS are there as well. The cost to a person with ALS averages around a quarter of a million dollars over the course of the disease. That cost comes in the form of piles and piles of bills, insurance forms, and more forms, and more bills. And while each family’s financial challenges are different, the reality is that these challenges make an already difficult situation that much more so.

To better understand these challenges, The ALS Association and its partners made “understanding the insurance needs and financial burden” of people with ALS the topic of the first ALS Focus survey conducted earlier this year, the results of which are now available.

Continue reading Assessing the Financial Burden of ALS—FOCUS Survey Results

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.

Continue reading Communication Is Key—Speech Language Pathologists Find Ways to Help

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!

Continue reading Perspectives: Where Were You?

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.

Continue reading Tips for Enduring the Long, Hot Summer

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.”

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

“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.

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