ALS CONNECT

Perspectives: On Leaving a Legacy

By Gregg Ratliff

It’s somewhat of a desperate thought to think that we might invest our entire life here on this earth, with all the hardships that we experience and not be remembered for it. And yet, the truth of the matter is that there are very few recognizable names, which get passed down from generation to generation throughout history. Let’s see, there is Abraham Lincoln, John F. Kennedy, Alexander Graham Bell, Albert Einstein, Bill Gates and Gregg Ratliff. Beyond that we could probably continue our list for only another minute or two and then the additions to our list would begin to get rather sparse despite the history of millions and millions of people who have inherited this earth before us. Even most of the famous people in history have quickly been forgotten after their time in the sun… “kingdoms come and go” and “dust returns to dust.” I’m sure there are many ALS patients thinking, “I didn’t get to finish all the accomplishments that I planned on achieving and I feel a great disappointment.” That’s totally understandable! But, having observed my wife’s and other friends’ lives with ALS, I can tell you my ALS friends you INSPIRE us to new levels in our lives! Some of you write books with your eyes, some climb mountains, some attend social events in a wheelchair, events like; operas, concerts, weddings and graduations. Most of you courageous men and women retain an attitude of hope and optimism that outshines those of us not facing this scourge first hand. Your courage and dignity is an example to all! You don’t give up and you remind us that we must not give up in our trials either!

Living With ALS: Ken Danridge

Ken Danridge was just 56 years old when he was diagnosed with ALS. Married for 13 years to his wife Amy, Ken is the father of three young children – Blake, Maya and Addison. Ken also served in the U.S. Air force for nearly 20 years and was stationed in Oklahoma City during the terrorist bombing in 1995. With the muscles in his body progressively weakening, Ken now uses a motorized wheelchair to get around, a feeding tube to eat, and a ventilator to breathe. Despite the many limitations ALS has imposed on his once active lifestyle, Ken remains a beacon of positivity, intent on using his diagnosis to connect with others with the disease and influence and motivate the people around him. Below, Ken shares his philosophy on living with ALS.

Greetings, my name is Ken and I have ALS. I was officially diagnosed in March of 2017, but I had symptoms for about two years prior to the confirmation. I didn’t really think much about the periodic loss of fine motor skills in my left hand, but when I developed a dropped left foot I became concerned.

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:

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.

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.

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.

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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