Serving Those Who Served—Services Available for a Veteran with ALS

Among the many confounding facts about ALS is that veterans are twice as likely as the general population to develop ALS. While there is no fairness in this, those who served our country have the right to expect we as a nation will serve them in return. As we honor those who have served on Veterans Day, we wanted to take some time to explore what services veterans with ALS can access, how they can access them, and what they’ll find at the John A. Cochran VA Medical Center ALS Clinic:

Continue reading Serving Those Who Served—Services Available for a Veteran with ALS

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.

Continue reading Meet Our New Associate Director of Care Services

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.

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

ALSUntangled—Making Sense of Alternative ALS Treatments

The world today can seem like day after day of information overload. And with good reason. Want to find a good place for dinner? Here are 45 positive reviews of that Italian place down the street, but what about those 15 negative ones? Here are 10 reasons eggs are bad for you, and 12 reasons you should eat them every day. Which streaming service is best for you? Are you saving enough for retirement?

And we haven’t even touched on making medical decisions. For people with ALS, there are many well-regarded, well-informed medical professionals to rely on for advice on traditional treatment options. But for patients and families seeking information on alternative or “off label” treatments, it can seem like they are on their own, left to fend for themselves and to parse what is good information and what is spin. But that is not entirely true. For those wanting and willing to learn more, there is ALSUntangled.

Continue reading ALSUntangled—Making Sense of Alternative ALS Treatments

A Beneficial Way to Give—Charitable Gift Annuity Q&A

The basics of “planned giving” are right there in the name: It’s a form of charitable giving that’s planned. But the planning part, well, sometimes it can be hard. After all, taking the time to sit down and think about the future in any capacity–nonetheless charitable giving–often seems intimidating. And once you begin to consider the types and forms of planned gifts, you may find yourself even more lost than when you started.

But when you break down specific options, you might find the world of planned giving becomes a bit less daunting and you may even be surprised by the options that are out there. As such we wanted to explore in a little detail the Charitable Gift Annuity, a form of giving that has benefits for you and a non-profit of your choice.

Continue reading A Beneficial Way to Give—Charitable Gift Annuity Q&A

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.

Continue reading Listening to Learn—ALS Association Community Survey Results

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.

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