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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This is What ALS Looks Like

For the general public, ALS might bring some specific images to mind. Many might think of grainy black and white newsreel footage of Lou Gehrig standing in Yankee Stadium. Others might picture the same scene but replace the actual Gehrig with Gary Cooper from the movie Pride of the Yankees. Still others might picture—and hear—Stephen Hawking and his computer-generated voice. More recently, Steve Gleason has become what many think of when they think “this is what ALS looks like.”

But for those living with ALS and those caring for them, the disease isn’t embodied by a famous person, present or past. ALS looks like a kitchen reconfigured to allow for a power wheelchair at the table. It sounds like a ventilator or the hum of other medical devices. It feels like grips on silverware or textured plastic cups.

As we begin May and ALS Awareness Month, we want to explore what ALS looks, feels and sounds like for those with ALS and their families. As these families know, the progression of the disease means near constant change—some that can be planned for, and some that can’t.

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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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