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The United States Congress recently passed legislation to support five more years of ALS research and expand access to promising experimental therapies. We cannot afford to waste a moment. On Sept. 28, Congress passed the Accelerating Access to Critical Therapies for ALS (ACT for ALS) Reauthorization Act, which would…

In the fall of 2009, when my husband, Todd, first noticed a weak left arm, he thought it was a pinched nerve. He was referred to a spine-care clinic for physical therapy. A doctor there recognized that his symptoms might be due to ALS, canceled his physical therapy, and…

I’ve been living with my husband Todd’s ALS for a long time, and while the disease is always there in the back of my mind, I’ve learned to compartmentalize it. I don’t want to talk about ALS all the time, and I like having conversations beyond the topics of…

It takes real courage to face our fears, especially when those fears are tied to the daily challenges of living with ALS. Simply telling someone about what scares us — and knowing they have our back — goes a long way toward building confidence. That is why this month’s…

This week I visited Oklahoma City for the first time. Ever since I met my late husband, Jeff, who died from ALS in 2020, I had wanted to go. It was a meaningful place to him; in 1995, he served as part of the Bureau of Alcohol, Tobacco, Firearms…

In more than 16 years of living with my husband Todd’s ALS, I’ve fought a lot of battles, and I’ve won a few. When Todd was prescribed at-home physical therapy, he was also eligible for home health aides to assist with showering. I pressed the agency to give…

My husband, Todd, and I were having a discussion with a visitor in which our guest told us about his back pain and trouble sleeping. “You know what you should do?” Todd began. “Instead of getting out of bed, hire nighttime help, and they can roll you to your side…

ALS has changed the way I do everyday tasks. While I had to adopt some changes quickly — like giving up my driving privileges and no longer preparing meals — others crept in over time, like changes to the clothes I wear and my handwriting. What I found interesting,…

While a bond of mutual affection can define friendship, the truest of friends share more than that. These types of friends are irreplaceable and more embedded in our lives and hearts than others. Deep friendship requires each friend to call upon the other for help and support, even in the…

On a walk in the field near my home, I passed by fruit trees that my dad had planted for me in 2014, two years before his death. He dug holes with his backhoe, planted two cherry and three apple trees, and then fenced them in so deer wouldn’t ruin…