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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Making Your Voice Heard on Capitol Hill

On March 13 and 14, ALS advocates went to Capitol Hill to speak with representatives about legislation and policies intended to improve the lives of people with ALS. ALS advocates Mark Calmes and Tara Klucker had preliminary meetings with key legislators that are pertinent to our legislative priorities.

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Reflections from our Director of Programs and Services for Patient Care

Anna Zelinske, M.A., CRC, CCM joined our staff in the role of Director of Programs and Services for Patient Care last month. Anna has 19 years of experience in the disability field, with a Bachelor’s Degree in Psychology and a minor in Human Service Agency Management from Missouri Valley College, and a Master’s Degree in Rehabilitation Counseling from Maryville University. She has a niche for developing and overseeing quality programs with a solid understanding of addressing the needs in the community and working with a team to making a positive impact for those served. In today’s post, Anna shares her story of how she got her start in the disability field and her work at the Chapter so far.

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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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