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!

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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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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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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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Caregiver Advice from Caregivers for People with ALS

Eat and sleep regularly. Take time for yourself. Breathe. This is often the advice caregivers receive. Although these are important it’s sometimes not the most helpful or only scratches the surface of what advice caregivers really need, especially for those who are caring for someone with ALS. Based on what caregivers in our area have experienced, here is a list of advice specifically intended for caring with someone with ALS.

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