We know the life of a caregiver for a person with ALS is not easy. That is not at all to say that it isn’t incredibly rewarding, but it is not easy. The same thing might be said, but for completely different reasons, about being a small business owner. Sure, that too can be rewarding, but few if any small business owners would describe it as easy.
But what if you combined the two, and in combining the two you were able to enhance both roles, all while facing a global pandemic? That would be something you might need a personal trainer to have the stamina to face. And that, it turns out, is kind of how we got here in the first place.
November is National Family Caregivers Month, a time when we make a point to recognize those who more often than not don’t seek recognition. Those who often put the needs of others before their own. For those in our ALS community, it is a time to remember that ALS is a disease that challenges the whole family in ways unique to each family, but where solutions are unique to each family as well, like for the Swinnen’s.
Continue reading Facing Challenges and Finding Solutions—A Family Story for Family Caregivers Month
This week is Feeding Tube Awareness Week, and in light of the fact that many people with ALS will have to face the decision of if or when to have a feeding tube placed, we asked Care Service Coordinator Mary Love, who is a registered dietician, some questions about the ins and outs of feeding tubes:
Continue reading What Should You Know About Feeding Tubes?
We have at times here attempted to provide a look at what living with ALS looks like. This is at times daunting as every person with ALS experiences the disease in their own unique way. What is common for all people with ALS is that there are challenges to overcome. These challenges are sometimes small, and sometimes monumental. But they are there—day-in, day-out—and must be met.
Continue reading Living with ALS—A Small Look
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.
Continue reading The Year That Was—Looking Back
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.
Continue reading November Is Family Caregivers Month—A Time to Honor Those Who Care
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
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
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
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
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
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”
Continue reading Extra Hands for ALS—John Burroughs Students Honored for Lending a Hand to Make a Difference
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.
Continue reading Care Services FAQ, Part 2