Highlights from ALS Connect in 2018

This past year on ALS Connect, our goal has been to feature a wide variety of stories and information to highlight the different facets of ALS, including caregiver tips, living with ALS and updates on research and advocacy.

Featuring people on the front lines battling ALS resonates with others who may not know the personal impact of ALS or have experienced something similar. And because ALS affects more than just the individual with the diagnosis, those perspectives are important as well. Here were some of those posts from over the last year:

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Perspectives: On the True Gifts of Christmas

By Gregg Ratliff

Occasionally, Nancy and I would experience a rough emotional week. Most of the time when my dear wife displayed more tears than usual, I did not allow it to influence my own disposition. Some days she was able to communicate with her eyes and some days she was not. I remember one particular December day when she could move her eyes to communicate with me she told me that she was feeling “sad” and “depressed.” Of course, that broke my heart! On days like this I would vary our daily activities in an attempt to avoid the “routine” and pick up her spirits. For example, I would play audio book for her, downloaded some music and read to her more than usual, all of which seemed to help – some. The Christmas season was always Nancy’s favorite season and I suppose her inability to “experience Christmas” by shopping, having a “tea party” with her girlfriends, and just generally participating in the hustle and bustle of her favorite season affected her normally cheerful attitude. Nancy’s “love language” was gift giving.

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Adapting What You Do: Continuing Activities After an ALS Diagnosis

For people with ALS, a lot of lifestyle changes have to be made as the disease progresses, including changes in how free time is spent. Those who are active or have a favorite hobby often find symptom progression challenging and disheartening. However, there are ways to keep doing what you enjoy doing despite ALS. Here are some ways you can stay involved with both indoor and outdoor activities.

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Anndee Glick: Caring for our Heroes with ALS

Anndee Glick, MSN, RN, ANP-BC, is a nurse practitioner and clinical coordinator at the VA St. Louis, John Cochran Division’s ALS Multidisciplinary Care Clinic.  During a recent Veteran’s Day recognition ceremony honoring veterans with ALS, Anndee addressed the audience of military heroes and their families. Following is the text of her speech.

“When I started taking prerequisites for my nursing program in the spring of 1998, my idea about what a nurse was and did were mostly learned by watching Major Margaret Houlihan from “MASH”.  What I  didn’t know when I enrolled in nursing school was that I had enlisted in Colonel Joyce Taylor’s Army.  Colonel Taylor, known to me as Doctor Taylor, had served in a real-life “MASH” Unit during Desert Storm.  The lady that I came to know as Joyce became my friend, mentor, and role model in nursing.

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The Impact of Being a Rare Disease Caregiver

Being a caregiver to someone with ALS can be rewarding, but it also takes a toll both physically and mentally. As National Family Caregiver Month comes to a close and we enter the holiday season, the year-round efforts of caregivers for people with rare diseases, including ALS, continue on. Families with ALS should know they are not alone in their struggles and sacrifices—so many people across the country are forced to readjust their lives in response to this disease. Here are some statistics that show the impact it can have on caregivers.

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Giving Thanks This November

At the St. Louis Regional Chapter, we are incredibly thankful to everyone who joins the effort to find a cure and provide services for people with ALS in eastern Missouri and central and southern Illinois. This year during the holiday season, we’re sharing what makes people thankful in our community who are dedicated to fighting ALS. Here are some of the things they’re thankful for this year.

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Perspectives: A Thankful Thanksgiving

By Gregg Ratliff

I love Thanksgiving! It was always my father’s favorite holiday. He passed away on November 24, 1997. I found it to be somewhat ironic that while he loved Thanksgiving, he had a stroke on Thanksgiving Day and he was buried four years later on Wednesday, the day before Thanksgiving. It just seems like more than a coincidence.

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