The Year That Was—Looking Back

It’s the time of year where you almost can’t help looking back. In a few short days 2019 will be no more. The year has been one of milestones and new beginnings for us here at the ALS Association St. Louis Regional Chapter, and while we are looking back we wanted to include you and remember what a year it’s been.

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November Is Family Caregivers Month—A Time to Honor Those Who Care

Do you ever feel tired at the end of the day? Most of us do. Be it work, or family, or just the running around of daily life, most of us have had the feeling of wondering how we managed to squeeze it all in today, and how we’ll possibly do it all again tomorrow.

Now, imagine that on top of everything you already have to do, you’ve got another whole job on top of that. One that requires your complete attention; one that can be physically and emotionally taxing; one that it seems at times that only you can do. And so it is with family caregivers across the country.

November is National Family Caregivers Month, a time to recognize and honor family caregivers for all they do. It is also a fitting time to explore the role our ALS family caregivers play in the role of people with ALS, and how we as a community can help make their lives a little bit easier.

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Meet Our New Associate Director of Care Services

Melissa Smith, MSOT, OTR/L, joined our team as Associate Director of Care Services this September. Before joining the ALS Association St. Louis Regional Chapter, Melissa spent the last 14 years working at Paraquad, most recently as the Manager of the Health and Wellness Center. She is an Occupational Therapist and has experience working with people with a variety of disabilities, including ALS. Here in her own words she shares her journey as well as what occupational therapy can mean to people with disabilities and caregivers.

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Home Modifications for ALS—You Don’t Have to Do It Yourself

There is no getting around it, for nearly all people with ALS shortly after the diagnosis comes the need to address home modifications. The needed modifications could be minor at first, or the need could be significant. But in any case the modifications will feel significant because the changes being made will not simply be made to a house, condo or apartment, but to a home. Modifying a doorway on a house may be a straightforward tasks, but modifying a doorway on a home could mean removing the pencil marks and dates that show how tall children or grandchildren were when they were growing up.

There will be considerations beyond cost and functionality. There will be emotional costs as well. After factoring all these in, you can begin to plan for a home that makes sense for everyone. Modifications can also make life easier and safer for caregivers and other family members.

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Listening to Learn—ALS Association Community Survey Results

The Dali Lama once remarked: “When you talk, you are only repeating what you already know. But if you listen, you may learn something new.” In that spirit, the national ALS Association undertook a community survey in early 2019 to hear from the community about programs and services that people consider important, reasons why people were not accessing some programs, major challenges, and issues around medications. In listening to the community about their realities, the ALS Association is better able to incorporate real world information in to care services planning activities and to inform priority setting, program outcomes, and program improvements.

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Extra Hands for ALS—John Burroughs Students Honored for Lending a Hand to Make a Difference

High school students often get a bad rap. Sometimes it is deserved. High school, after all, can be a challenging time. And while figuring out this period of growth and change, students can and do sometimes make at best questionable decisions. We can all probably look back at our high school years and think of one or two (or maybe more) cringe-worthy moments. It is all part of growing up.

But it would be unfair to not acknowledge that high school students can and do have much to contribute to the greater good. In some cases, their dedication and energy towards a cause is nothing less than awe-inspiring. We have been witness to just such dedication and energy here in our local community in the form of John Burroughs School and the “Extra Hands for ALS” club.

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Care Services FAQ, Part 2

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. A few months ago, they answered some common questions they receive. Here is Part 2 of those FAQs.

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