Joyful Sorrow - a Column by Kristin Neva

My husband, Todd, and I realized that massage could be beneficial for him even before he was diagnosed with ALS. Before we knew why his left arm was weak, I would massage his bicep and forearm, which helped him to better use it. Sometime after the diagnosis, his legs began…

I was struck by the wording in an advertisement in Quest magazine, a publication of the Muscular Dystrophy Association, that invited people “coping with amyotrophic lateral sclerosis (ALS)” to participate in an observational study. I think of “coping” as not only dealing with something difficult, but doing so…

On New Year’s Eve, I took our kids and their friends bowling. My husband, Todd, who has ALS and is paralyzed, stayed home and used his computer. As we arrived at the bowling alley, I received a text from Todd saying that he needed my help with his…

It feels like a win when we can figure out how to include my husband, Todd, in game nights. He is paralyzed because of amyotrophic lateral sclerosis (ALS), so any game that requires writing or moving is a challenge. That would include most games, but we can make some…

“How am I supposed to drive when I can’t see anything?” my nearly 16-year-old daughter asked. Sara and I were logging night-driving hours, which are required before she can take the second segment of driver’s education in January. She already has 12 hours behind the wheel, mostly during the day,…

We decorated for Christmas this past weekend. The kids and I went out into the woods, and my 12-year-old son, Isaac, cut down a balsam fir. My 15-year-old daughter, Sara, carried it back to our house, and we put it in the tree stand in the living room. When we…

My husband Todd’s lung strength is weak from ALS. He’s gotten sick a few times in the last several years, and each time we wondered if he would pull through. It was scary, and it has caused us to calculate the risk of going out in public or receiving…

About four years ago, I began to be overwhelmed with sadness about my husband’s continuing decline from amyotrophic lateral sclerosis (ALS). Todd and I have often said that if the disease progression would just stop, we could adjust. But managing ALS only becomes more stressful as time goes on,…

I’ve been preparing for winter. I drained the hoses and hung them in the garage a few weeks ago. We used the lawnmower to pull Comet’s doghouse from our backyard to the front porch, where he will still be able to get into it after the snow accumulates. I called…

“Your YouTube channel must be taking off,” my 15-year-old daughter said. “Your edema video was recommended to me again. I was just scrolling through YouTube, and then I see it, and I’m like, ‘What’s this?’” Sara continued with increasing volume: “Oh, that’s my father’s foot! My father’s foot has…