ALS CONNECT

Dispatches From a Former Caregiver—Our Journey Ends

November is National Family Caregivers Month, and today’s blog post is the fourth 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.

Today Scott brings his and Tammy’s story back from Europe to the United States. Back in the U.S. they face challenges with medical devices, accessible seating, and unfamiliar bathroom tile. Lastly, they reach the end of their journey with ALS.

Get Ready for Game On!—And You Can Play Along!

If you are listing off all-time favorite TV game shows, Family Feud is certain to come up sooner rather than later in the conversation. And if you are listing off game shows that seem the most fun to be on, Family Feud probably comes up even sooner. Since the beginning way back in the 1970s, it just seems like, well, fun. Right?

But realistically, few if any of us will ever get the chance to be ON Family Feud. But that doesn’t mean you can’t find a way to join in the fun. And if that fun just so happens to support the fight to end ALS, so much the better.

Enter Game On!—The ALS Association’s premier dinner event, combining fun and fundraising in one elaborate extravaganza. This energetic party will continue the momentum of the Ice Bucket Bash, and positively impacting the future of the ALS landscape. The event is Friday, November 12, at historic Union Station.

“To Live Their Lives to the Fullest”—Physical Therapists as Part of an ALS Multi-Disciplinary Care Team

Odds are you’ve had some interaction with a physical therapist (PT) in your life. Most of us have had sprain, strain, or something that needed some help to heal right. To make sure that happened, your doctor prescribed a few sessions of PT to make sure you were doing your exercises, and doing them correctly.

October is National Physical Therapy Month, a time when we celebrate those in the physical therapy field for all they do, including the vital role they play for people with ALS and their families.

Whitney Roper (PT, DPT, ATC) is a physical therapist with the Department of Neurology, Washington University School of Medicine. As the physical therapist at the Washington University Neuromuscular Clinic, she is part of the multi-disciplinary team that serves people with ALS in our community. As we near the end of National Physical Therapy Month, we asked her to share some insights on her profession and the role it plays for people with ALS. Here’s what she had to say:

On Llamas, ALS, and Love—Author Finds His Own Way to Give Back

For many of those touched by ALS, the impact is a lasting one. Many who have known someone who has passed away from ALS look to find a way to give back to the fight to end ALS, be it through volunteering, spreading awareness, or donations. The timing of when they come to the cause is as individual as their stories; some are ready soon after losing someone, others find that time brings them back. Each find their own way, in their own time.

For Byron von Rosenberg, the journey with ALS began 20 years ago, when his father was diagnosed with the disease. He passed away in July 2002. Byron’s very first poem, “Look at My Hands,” was written about his father’s struggle with ALS. The poem is a sort of conversation between God, a father, and son, and remains a guide to Bryon to this day.

From that poem and a lifelong love of words, other poems and stories came, including his most well-known poem “I Don’t Want to Kiss a Llama!” Since then, Bryon has made this love of words into a 2^nd career of sorts as a poet, author and storyteller.

But having been touched by ALS, Bryon wanted to find a way to give back through his work. Through the end of October, he is donating $1 from every book sold to the ALS Association St. Louis Regional Chapter, and is planning more opportunities to support the work of the ALS Association in the upcoming months.

From The Update: An Unexpected Fight—Local UFC Star & His Grandmother Battle ALS Together

It has been a busy few months for Joaquin Buckley, who Saturday night was a winner in his latest UFC fight to push his record to 13-4. But as he recently shared with us in the latest edition of The Update newsletter, his most important role is that of caregiver to his grandmother Peggy Brooks, who was diagnosed with ALS in 2017. Here is their story:

You wouldn’t know just by looking at 27-year old UFC Knockout of the Year Winner Joaquin Buckley that he’s facing challenges brought on by a neurodegenerative disease. Though he’s not the one experiencing symptoms, his life was forever altered when his grandmother was diagnosed with ALS in 2017.

Time is a Precious Commodity—ALS Focus Caregiver Survey Results

The results of the ALS Focus Caregiver Survey were published recently, and they tell a story that is familiar to many: time is a finite resource, and how we choose to spend our time says a lot about what we think is important.

This survey included responses from over 600 current and past caregivers about their needs and wellbeing. They were asked about topics including the amount of time they dedicated to caregiving, the programs and tools they used as caregivers, how prepared they felt they were for changes in caregiving responsibilities, their concerns about caregiving, and how they assessed their quality of life.

Summer 2021 ALS Research Round Up

It’s easy to imagine research into any topic, and especially into ALS, as it might appear in a movie or TV show. Someone somewhere in a lab peering into a microscope or a test tube suddenly jumps up and exclaims “I’ve found it!”, followed by a montage of headlines announcing the breakthrough.

The truth, of course, is the real research is incremental, with findings reviewed and tested, then reviewed and tested again, and then reviewed and tested some more. Today’s promising result sometimes doesn’t stand up to more detailed scrutiny, and yesterday’s set back may end up bearing fruit with some tweaks or by helping inform a new approach.

With that in mind, we wanted to give you a look at some recent developments that will hopefully continue the trend of promising discoveries from that last few years:

Benefits of Palliative Care for People with ALS

Today’s blog post is by our intern Bradie Schoemehl, who explains what palliative care is and why it can be beneficial for people with ALS.

By Bradie Schoemehl,

Anyone affected by ALS knows that the loss of the everyday things in life is one of the hardest obstacles to face when battling this disease. The walks around your favorite park are no longer possible; losing the ability to have weekly anticipated outings with family and friends; no longer being able to reach out and grab the hand of a loved one. A person with ALS and their family do not need to face these challenges alone, which is why a palliative care team is so important. Facing this disease head-on is made easier when patients are not only surrounded and supported by loved ones, but also by a dedicated team of professionals. It is the goal of palliative care that patients’ wants and wishes are respected, quality of life is a top priority, and what can be controlled will be controlled.

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…

In Memoriam: Remembering Those We’ve Lost to ALS

Those who have experienced a Walk to Defeat ALS can attest to the sense of community everyone involved feels. The feeling is different for each person, and perhaps different when we gather in-person or when we Walk Your Way as we are again this year, but the act of walking in support of the cause always seems to resonate and remind us all that we are not alone on this journey.

Among the most important parts of a Walk to Defeat ALS day is the memorial banner, which lists the names of each person our Chapter served who we have lost to ALS, and anyone who is being walked in memory of. Last year when we couldn’t gather in person, we decided to create a virtual memorial banner and posted it to our Walk to Defeat ALS Facebook page. As we are once again walking in the way that makes the most sense for you this year, we’ve created another virtual banner for 2021, and wanted to share it with you here as well.