November Is Family Caregivers Month—A Time to Honor Those Who Care

Do you ever feel tired at the end of the day? Most of us do. Be it work, or family, or just the running around of daily life, most of us have had the feeling of wondering how we managed to squeeze it all in today, and how we’ll possibly do it all again tomorrow.

Now, imagine that on top of everything you already have to do, you’ve got another whole job on top of that. One that requires your complete attention; one that can be physically and emotionally taxing; one that it seems at times that only you can do. And so it is with family caregivers across the country.

November is National Family Caregivers Month, a time to recognize and honor family caregivers for all they do. It is also a fitting time to explore the role our ALS family caregivers play in the role of people with ALS, and how we as a community can help make their lives a little bit easier.

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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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Meet Our New Associate Director of Care Services

Melissa Smith, MSOT, OTR/L, joined our team as Associate Director of Care Services this September. Before joining the ALS Association St. Louis Regional Chapter, Melissa spent the last 14 years working at Paraquad, most recently as the Manager of the Health and Wellness Center. She is an Occupational Therapist and has experience working with people with a variety of disabilities, including ALS. Here in her own words she shares her journey as well as what occupational therapy can mean to people with disabilities and caregivers.

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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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Walk a Crooked Path: Be Prepared!

By Saundra Stewart

I have a pet peeve. Okay, I have more than one, but I’m only going to mention one today! I am irritated to no end to walk into a public place and not be able to find a “family” restroom. I was grateful when our pastors built our new sanctuary that they thought it wise to include a family restroom in the plans. Why? If you’re caring for a person who is totally incapable of caring for him/herself, it’s often necessary to help them with their bathroom needs. It was such a relief to be able to take Don into the restroom and help him use the urinal or whatever else he needed to take care of. He certainly wasn’t comfortable going into the ladies’ restroom to potty, and I was equally uncomfortable going into the men’s bathroom to help him!

Don was a man’s man. He was so intent on jogging that he would jog to work, then jog back home after work was ended. He loved riding motorcycles (dirt bikes, especially), playing racquetball and softball, and getting out in the yard to play soccer or basketball with the grandkids.  With all those manly hobbies, though, his favorite thing in the whole wide world was sitting down with a group of cronies and playing bluegrass on his five-string banjo. As ALS began to slowly take over his body, I saw those things he loved drop off, one by one. He began to fall (foot drop), so it became necessary to use a walker or scooter. No more soccer with the kids in the yard. He would sit and watch them play, but it just wasn’t the same.

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