Having the Conversations None of Us Want to Have

Conversations about end-of-life care and advance care planning are difficult in the best of circumstances. For those with ALS and their families, these conversations present their own challenges, and the challenges of these conversation are often unique. It can be hard to think about planning for the future while the present has so many complications of its own. It can also be upsetting to think about declining abilities and the inevitable outcome of the disease. But having these important conversations about the future at a time and place that you decide can provide piece of mind for everyone involved.

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Walk a Crooked Path: The Big Bad Wolf and the Three Bears

By Saundra Stewart

Not so long ago in a land not so far away lived a brave, strong man and his white-haired wife.  They loved their little blue cottage on the hill.  They loved playing with their grandchildren, going for long bicycle rides, and camping – especially camping!

One day, life was going along much as normal, when there came a knock on the door.  When the brave, strong man went to answer, there on the porch stood a big, ugly, horrible wolf.  On the front of his sweatshirt were the letters “ALS.”  The man didn’t know what that meant, but he knew the creature was one of the ugliest things he had ever seen!  Right behind the wolf were three bears.  Big bears.  Scary bears.

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Care Services FAQ

The care services team at the St. Louis Regional Chapter are the forefront of knowledge and information on ALS and what it looks like to live with the disease in our region. They answer questions from people with ALS and their families on a regular basis as they meet with families at clinics or during home visits. Here are the answers to some of the most common questions they receive.

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Walk a Crooked Path: The Irony of Life

Today’s blog post is the first installment of a recurring monthly series from our good friend Saundra Stewart. When her husband, Don, was diagnosed with ALS, Saundra became his full-time caregiver for over 10 years. In her series, “Walk a Crooked Path”, Saundra shares her insights on ALS as a caregiver.

By Saundra Stewart

Ever heard of Lou Gehrig? I can remember my dad, an avid baseball fan, talking about Mr. Gehrig when I was just a kid. Because Dad liked him, I made it my business to like him, too. I read books, I watched movies, I educated myself — especially about the odd illness that Lou Gehrig came down with: Amyotrophic Lateral Sclerosis — ALS. What a long name, and what a devastating disease.

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Navigating Nutrition for People with ALS

With all of the changes that come with ALS, how people with the disease continue to provide nourishment for their bodies and maintain a healthy diet is an important consideration. In recognition of National Nutrition Month, we asked some common questions about nutrition and ALS to Nicole Dirnbeck, MA, RD/LD, a clinical dietitian at St. Louis University Hospital and ALS dietitian for SLUCare.

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Perspectives: Life After Caregiving

By Gregg Ratliff

Post Traumatic Stress Disorder (“PSTD”), soldiers have it. Can caregivers have it too? I am not a licensed psychologist so I can’t say for sure. But I do know I have experienced a lot trauma and stress “living in a war zone” for seven years of day and night caregiving. ALS takes its toll on the entire infantry around it.

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