August is National Wellness Month, a time to focus on self-care, managing stress and promoting healthy routines. For people with ALS and their families, all of these can be challenging, but they are attainable. The national ALS Association has been running a series on its blog this month exploring the many facets of wellness and the ALS community.
In that spirit, we asked our friend Scott Liniger to share how approached self-care and stress management when he was a caregiver to his partner Tammy Hardy, particularly how he approached his mental well-being.
Continue reading Wellness Month Wisdom from Our Friend Scott
We are so excited to be back IN PERSON for the St. Louis Walk to Defeat ALS this Saturday (June 25, 2022) in Forest Park. It has been three long years since we have been able to gather together as a community for the St. Louis Walk, and the chance to see so many old and new friends in one place has us all counting down the hours.
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. For the last two years when we couldn’t gather in person, we created a virtual memorial banner and posted it to our Walk to Defeat ALS Facebook page. Even though we will be back in Forest Park this year, we’ve updated the virtual banner to create a lasting memorial to those we have lost to ALS that the ALS Association St. Louis Regional Chapter served during their fight. We wanted to share it with you here as well.
Continue reading In Memoriam: Remembering Those We’ve Lost to ALS
You’d be forgiven by most if you admitted you can’t keep up. There are awareness months, weeks or days for so many things. It’s not that it is a bad thing, it’s just that it is it so much. And yet here we are again, reminding you that May is ALS Awareness Month. Why?
And honestly, if you are a regular visitor here, you don’t really need reminding. As a part of the ALS community you are well aware of the challenges of this horrible disease. You are aware of the progress in research being made even as we all wish it would move faster. You are aware of the funding ALS advocates have been able to secure even as we all wish it could be more.
Still, ALS is categorized as a rare disease, and for a large portion of the overall population, ALS isn’t something that crosses the mind very often. Sure, they probably know about Lou Gehrig and “Lou Gehrig’s Disease,” and they probably remember the Ice Bucket Challenge and what a wild ride that was. But other than that? Like we said, it’s hard to keep up.
So it as much to remind the world as to remind ourselves that each May we work to shine a light on all people with ALS, and all the people who are working every day to find treatments, and a cure. To remind everyone that of the more than 140 active research projects around the world. To remind everyone that thanks to more than 40,000 ALS advocates, we secured millions in additional federal dollars to support that research, veterans with ALS, and to empower people with ALS to live life to the fullest.
Continue reading It Takes All of Us—ALS Awareness Month
Over the years we’ve talked a lot about how no two cases of ALS are the same; about how each person with ALS and their caregivers experience ALS in their own way. But we also have learned that the experiences of those who have seen the challenges of ALS can be very helpful to those facing the disease. There are solutions out there to many of the challenges people with ALS face, and as importantly there are many, many people out there who are willing to offer both advice and assistance.
About a year ago, we took a look at a video series that explored the respiratory challenges of ALS. Now in a new video series, the ALS Association takes a look at some strategies for coping with and preparing for changes in mobility.
Continue reading “Give You More Energy Back for the Things You Want to Do”—Strategies for Maintaining Mobility Video Series
In a lot of ways, 2021 has been a roller coaster ride. For many in the ALS community and beyond, the year began on a hopeful note with COVID vaccines becoming more and more available. For a few weeks in early summer, it looked like the pandemic might be behind us. But as summer rolled on and eventually turned to fall the word “variant” entered our vocabulary is a big way, and as we near the end of December we find ourselves back in a world of uncertainty.
Continue reading Finding a Way—A Look Back at 2021
Today’s blog post is the last in the 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 has explored the parts of his and Tammy’s story that tended to the, shall we say, more irreverent side of their journey.
We’d like to say a heartfelt thank you to Scott for taking us along for the ride on this journey with him and Tammy. Scott thought it appropriate to give Tammy the last word to end the series, and so now here are a few final words from Scott, and Tammy….
Continue reading Dispatches From a Former Caregiver—Epilogue
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:
Continue reading “To Live Their Lives to the Fullest”—Physical Therapists as Part of an ALS Multi-Disciplinary Care Team
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 2nd 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.
Continue reading On Llamas, ALS, and Love—Author Finds His Own Way to Give Back
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.
Continue reading In Memoriam: Remembering Those We’ve Lost to ALS
It started, as so many ideas do these days, with a text. “(D)o you think it would [be] possible and appropriate to approach mlb with doing something with Lou Gehrig like they’ve done Jackie Robinson?” songwriter Bryan Wayne Galentine, who had been diagnosed with ALS two years earlier, texted friends whom he’d met through the tight-knit ALS community on June 24, 2019. From that the idea was born.
Continue reading Lou Gehrig Day Shines a Light on ALS Across Major League Baseball