alsconnect

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.

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.

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.

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.

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.

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.

Living with ALS: The Meskers

Since Pat’s ALS diagnosis last March, there have been a lot of changes in his life. But one thing that will never change is the love he and his wife, Hariett, have for each other.

What You Should Know About Planned Giving

The questions in this post are answered by by Jessica Chapman, the National Director of Planned Giving with The ALS Association. She oversees the planned giving department and focuses on donor relations and marketing. Having worked in gift planning since 2009, Jessica enjoys connecting donors and their advisors with gift options that best meet their needs.

Tips to Beat the Cold for People with ALS

Winter takes a toll on everyone, especially people with ALS who can experience increased muscle cramping and tension as well as a weakened immune system. Here are some tips on how people with ALS can take care of themselves during the cold winter months.

Perspectives: On Leaving a Legacy

By Gregg Ratliff

It’s somewhat of a desperate thought to think that we might invest our entire life here on this earth, with all the hardships that we experience and not be remembered for it. And yet, the truth of the matter is that there are very few recognizable names, which get passed down from generation to generation throughout history. Let’s see, there is Abraham Lincoln, John F. Kennedy, Alexander Graham Bell, Albert Einstein, Bill Gates and Gregg Ratliff. Beyond that we could probably continue our list for only another minute or two and then the additions to our list would begin to get rather sparse despite the history of millions and millions of people who have inherited this earth before us. Even most of the famous people in history have quickly been forgotten after their time in the sun… “kingdoms come and go” and “dust returns to dust.” I’m sure there are many ALS patients thinking, “I didn’t get to finish all the accomplishments that I planned on achieving and I feel a great disappointment.” That’s totally understandable! But, having observed my wife’s and other friends’ lives with ALS, I can tell you my ALS friends you INSPIRE us to new levels in our lives! Some of you write books with your eyes, some climb mountains, some attend social events in a wheelchair, events like; operas, concerts, weddings and graduations. Most of you courageous men and women retain an attitude of hope and optimism that outshines those of us not facing this scourge first hand. Your courage and dignity is an example to all! You don’t give up and you remind us that we must not give up in our trials either!