Dispatches From a Former Caregiver—Have You Heard Venice has A LOT of Canals?

Today’s blog post is the first of in a recurring series from our friend Scott Liniger, who was an ALS patient caregiver for his partner Tammy Hardy for six years. In his series “Dispatches From a Former Caregiver” Scott hopes to explore the parts of his and Tammy’s story that tend to the, shall we say, more irreverent side of their journey.

Tammy Hardy lost her battle with ALS in 2008. She was 39 years old. She was diagnosed with ALS six years earlier, at the age of 33. After her diagnosis, she had a cadre of caregivers, including her sisters and brother, her parents, her partner Scott Liniger, and his parents and family. Since her death, Scott has been a member of the St. Louis Walk To Defeat ALS committee, and participates and fund raises for Walk Team Tammy Hardy, along with Tam’s sisters, Kelly and Keri (and lots of family and friends).

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Learning from Those Who Know—Latest ALS Focus Survey Needs to Hear from Current or Past Caregivers

Making assumptions can lead to trouble, but we all do it from time to time. You might assume that since the weather was nice yesterday it will be so again today, but if you don’t bother to find the weather forecast you may end up with some soggy clothes at the least. Annoying to be sure, but not really that big of a deal.

However, assumptions about the impact of a disease as serious as ALS can have far reaching implications. ALS researchers around the world work hard to challenge assumptions and find the facts behind the causes of ALS and how to best treat—and someday cure—the disease. But even in assessing the impact of ALS on day-to-day living, there is the danger of assuming.

The goal of the ALS Focus survey project is to move beyond those assumptions. It is a patient- and caregiver-led survey program that asks people with ALS and current and past caregivers about their needs and burdens. The goal is to learn as much as possible about individual experiences throughout the disease journey so that the whole ALS community can benefit.

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Facing Challenges and Finding Solutions—A Family Story for Family Caregivers Month

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.

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What Should You Know About Feeding Tubes?

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:

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Living with ALS—A Small Look

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.

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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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