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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Walk a Crooked Path: I Think I Can!

By Saundra Stewart

I find myself remembering some odd things from time to time. I can barely recall some of the crises Don and I faced together during his war with ALS, but I can see clearly the look in his eyes during that time. I don’t necessarily remember what the doctors said, but I can tell you, verbatim, things that Don said to me when it was a major struggle to even speak.

The lesson I taught my class this week at church was from Chapter 7 of a Max Lucado book titled “Unshakable Hope”. It was talking about how God does the impossible. When we’ve gotten to the end of our rope, He’s there. But God can do nothing as long as we stubbornly hold onto our own will. It made me think of two specific times during my time of caring for Don.

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Home Modifications for ALS—You Don’t Have to Do It Yourself

There is no getting around it, for nearly all people with ALS shortly after the diagnosis comes the need to address home modifications. The needed modifications could be minor at first, or the need could be significant. But in any case the modifications will feel significant because the changes being made will not simply be made to a house, condo or apartment, but to a home. Modifying a doorway on a house may be a straightforward tasks, but modifying a doorway on a home could mean removing the pencil marks and dates that show how tall children or grandchildren were when they were growing up.

There will be considerations beyond cost and functionality. There will be emotional costs as well. After factoring all these in, you can begin to plan for a home that makes sense for everyone. Modifications can also make life easier and safer for caregivers and other family members.

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ALSUntangled—Making Sense of Alternative ALS Treatments

The world today can seem like day after day of information overload. And with good reason. Want to find a good place for dinner? Here are 45 positive reviews of that Italian place down the street, but what about those 15 negative ones? Here are 10 reasons eggs are bad for you, and 12 reasons you should eat them every day. Which streaming service is best for you? Are you saving enough for retirement?

And we haven’t even touched on making medical decisions. For people with ALS, there are many well-regarded, well-informed medical professionals to rely on for advice on traditional treatment options. But for patients and families seeking information on alternative or “off label” treatments, it can seem like they are on their own, left to fend for themselves and to parse what is good information and what is spin. But that is not entirely true. For those wanting and willing to learn more, there is ALSUntangled.

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