Living the Now but Thinking of the Future—The Jane Calmes ALS Scholarship Fund Kicks Off Year Two

Right now, it can be hard to think much about the future. We are locked in on the now, and what current events mean for our family and loved ones. Right now, it can be hard to think that the future, with all the thoughts and worries of everyday life, is coming and that time does not stand still. There will be a spring, summer, and fall. Students of all ages will return to classrooms and campuses, and the financial burdens of college will be there as well.

But for students whose lives have been impacted by ALS, there is the Jane Calmes ALS Scholarship Fund, which was established in 2019 to support the post-high school education for such students. The ALS Association is now accepting applications for year two of the fund. Applications for this year’s scholarship awards, which will be distributed for the fall 2020 and spring 2021 semesters, are being accepted through May 18, 2020.

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What Should You Know About Feeding Tubes?

This week is Feeding Tube Awareness Week, and in light of the fact that many people with ALS will have to face the decision of if or when to have a feeding tube placed, we asked Care Service Coordinator Mary Love, who is a registered dietician, some questions about the ins and outs of feeding tubes:

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Living with ALS—A Small Look

We have at times here attempted to provide a look at what living with ALS looks like. This is at times daunting as every person with ALS experiences the disease in their own unique way. What is common for all people with ALS is that there are challenges to overcome. These challenges are sometimes small, and sometimes monumental. But they are there—day-in, day-out—and must be met.

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ALS Medicare Resource Line—Help with Getting the Help You Need

Sometimes getting the help you need starts with figuring out what help is out there. This is never more true that when you are dealing with a government program, like Medicare. What are the resources? Are you eligible? How do you apply? How do you know what information is reliable?

Now, for people with ALS and their families, there is a reliable, trusted resource they can turn to, free of charge. In partnership with Patient Advocate Foundation, the ALS Association has recently introduced a new resource for the ALS community: The ALS Medicare Resource Line.

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Walk a Crooked Path: A Time of Reflection

By Saundra Stewart

           My sweet husband has now been gone from this earth for three years. If I thought the years preceding his death were difficult, it was because I didn’t have a clue what the years without him would be like! We had “grown together” in an amazing way in our just over fifty years of marriage. We had our disagreements and adjustments, just as any couple who has been together for that length of time has had. But we both felt it was well worth the effort.

           When Don began showing symptoms of ALS, we made some decisions that would help me when we got farther down the road. I told Don very honestly that I would never put him in a care facility as long as I was at all able to care for him at home. And I meant it. There were times when he would see my weariness and he would say, “You probably ought to just put me in a home.” Instantly my resolve would revive. “Never!” I insisted.

           We talked about what he would like his children and grandchildren to remember most about him. One thing we wanted to do (but never did) was to make a recording of his speaking to each of his children and grandchildren individually. The time just never seemed right, or he didn’t know exactly what he wanted to say. You know how it is. It was a great thought, but never carried through to fruition. We both regretted at the end of his life that we hadn’t made that happen. 

           Don had a whole collection of Bibles. Having been a minister for a number of years and a teacher in church for the years following, he had a nice stockpile. He asked me to collect them all, and he wanted to give each of the grandchildren a Bible. He had marked in them, made notes in them, and some of the pages were a bit worn, but those things would just show the grandkids how much he had used them and treasured them. We took care of passing them out in the final months and weeks of his life. 

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Being Thankful Through Challenging Times

This week, many of us will gather with family and friends to celebrate Thanksgiving. Traditions vary from family-to-family and by region, but in many if not most cases, we’ll be asked to share what we are thankful for, and for families facing the challenges of ALS, sometimes being thankful is a heavy task.

While the choice on how to handle any holiday is entirely up to them, here are some thoughts on how to think about Thanksgiving during challenging times.

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Serving Those Who Served—Services Available for a Veteran with ALS

Among the many confounding facts about ALS is that veterans are twice as likely as the general population to develop ALS. While there is no fairness in this, those who served our country have the right to expect we as a nation will serve them in return. As we honor those who have served on Veterans Day, we wanted to take some time to explore what services veterans with ALS can access, how they can access them, and what they’ll find at the John A. Cochran VA Medical Center ALS Clinic:

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