ALS CONNECT

Year End Giving That Isn’t Just Impactful, But Meaningful

Thanksgiving has passed, December is here and the holiday season is suddenly in full swing. Between holiday gatherings, shopping, wrapping presents, cooking, and maybe one or two—or more—Hallmark movies, the most wonderful time of year can feel, well, mostly overwhelming. On top of it all, there seems to be a big push for donations by almost every charitable organization you’ve ever heard of.

It’s not your imagination. The reality is that the end of the year is a very important time for nonprofit organizations. Nearly a third of annual charitable giving happens in November and December, causing organizations to rely heavily on donations made during this time to fulfill their mission. When you make a year-end gift, you help nonprofits like The ALS Association provide their core services, things like caregiver relief, nutritional supplementation and equipment loan. Additionally, you could allow for additional or new services to unfold, perhaps something innovative like a robotic arm or a feeding machine. Just as importantly, you help sustain the future, allowing the organization to be positioned successfully in a new calendar year, so that all services to people with ALS remain free of charge and needs are met to the fullest extent.

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.

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.

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:

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.

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.

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.