Dispatches From a Former Caregiver—The Cobblestones Aren’t the Only Bumps You Have to Look Out For

Today’s blog post is the third 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.

Scott picks up the story shortly after his last Dispatch as their journey gets smoother in some ways, but bumpier in others…

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Surrounded by Love—A Former Volunteer Shares Her Family’s Journey with ALS

Jan Schmitz Mathew hadn’t really set out to write a book, but she is certainly comfortable with expressing herself through the written word. So when her father Roger began experiencing the symptoms of ALS in the fall of 2012, and after he was diagnosed in March 2013, she turned to writing. Rather obviously, at the time she was focused on her father, her mother, and the rest of her family—what was right in front of them. Her dad’s journey with ALS ended in October of that year, and while her writing continued, it was not yet time to think that maybe, just maybe, her experiences could have meaning for the larger ALS community.

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Dispatches From a Former Caregiver—Trying to Get on the Right Track, and the Right Train

Today’s blog post is the second 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.

Scott’s story today picks up shortly after his last Dispatch. After some additional drama with rental cars, Scott, Tammy and their friend Chris have made their way to the Milan train station as the head to Lyon, France. At least, that’s the plan…

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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).

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

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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