Thanks for Stopping By—Our 200th Post on ALS Connect

We admit, it snuck up on us. We have been posting here at ALS Connect since 2016, and it didn’t really occur to us to check in on how many posts that was. But as it turns out, this is the 200th post since we started back then. So it seemed appropriate to take a quick look back before we start into the next 200.

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Dispatches From a Former Caregiver—Epilogue

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….

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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.

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“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:

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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 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.

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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.

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Your Year-End Gift Has More Impact than You Might Think

December is here and the 2020 holiday season is in full swing! Sure, maybe a bit more of the holiday shopping is being done online, and what would normally be in-person gatherings are now Zoom meetings dotting the calendar. But even in these most unusual circumstances, this time of the year feeds feelings of generosity and fuels a desire to give. And although this holiday season may look different due to the COVID-19 pandemic, holiday giving remains more important than ever.

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Navigating Medicare Open Enrollment: What’s the right plan for you?

Medicare’s annual open enrollment period for health and drug coverage has begun and will continue through December 7, 2020. This time period allows those eligible to sign up, and those enrolled to change their selected Medicare health/prescription plan for the following year. It can be difficult to navigate, but the decisions you make during this period are critical, and you deserve to understand exactly what’s available.

As we approach the open enrollment deadline, we want to cover some Medicare basics, what this period means for people living with ALS, and resources available to select the right plan for you.

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Bringing About Real Change Step-by-Step: What it Means to Be an ALS Advocate

With the 2020 election looming, it seems every other ad highlights a different elected official in either a positive or negative light. But when we look beyond the talking points that dominate our screens, we often find that elected officials at the federal, state, and local level are not only open to, but eager to hear the thoughts of the constituents they are elected by. By becoming an ALS advocate today, you can make your thoughts known to your elected leaders and advocate for changes in laws and regulations that affect thousands of people living with ALS and their families.

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Not in This Alone—New Virtual Support Group Offers Sense of Community

Though the hardships of ALS can create mental health challenges and isolation, it may help to find support and strength from people who are going through or have gone through similar experiences. During this COVID-19 pandemic, maintaining a real-time connection with others has become all the more critical for our emotional health, and a support group provides an opportunity for people to share personal experiences and feelings, coping strategies, and firsthand information.

Begun in July of this year, our Chapter’s Virtual Support Group exists to help keep people with ALS and ALS caregivers connected emotionally in a time where we are not able to meet in person. Through this virtual community, we hope to help everyone feel closer.

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