Remembering our active life in the early years of ALS

I recently connected with another spousal caregiver who wondered how I felt about life now that my husband, Todd, has had ALS for nearly 14 years.

She’s just a few years into life with ALS, and her husband uses a power wheelchair and speech-generation technology and receives ventilation through a tracheostomy. They’re still active and embracing life, and her stories of her husband writing a book and speaking in public brought back memories of our earlier years with the disease.

We had many relatively good years, even after Todd was paralyzed and in a power chair, and particularly before he needed noninvasive ventilation. I think back fondly to winters when our family went to Michigan Tech hockey games and to summers when we’d go to various beaches on Lake Superior.

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Todd used to go to Applebee’s with a group of guys on Thursday nights, and our family would attend church Sunday mornings. Todd started and led a Second Saturday breakfast for men of the church, and he also became a lay preacher, speaking at our church every few months and occasionally at other churches.

While I was home taking care of Todd and our two kids, Todd and I wrote and published our memoir. Then I wrote three fiction novels. I got excited whenever my mom would take our children for Grandma time and we’d have uninterrupted time to work on the books.

Todd helped me rework scenes and edited the novels. He taught himself Adobe InDesign, typeset the books, and created the covers. We recorded our reading of the memoir for Audible, and we had fun creating content for our YouTube channel, ALS411: Tips and Tricks for Disabled Living. Our collaboration brought energy and excitement to our marriage.

We went on a few family vacations that were a day’s drive away. Todd’s favorite family memory is the last such vacation we took in 2019, nine years after his diagnosis. We drove to visit the Science Museum of Minnesota in St. Paul. He was able to roll around and look at the exhibits, and we watched a movie in an Imax theater.

We had a good time, but the trip was physically hard on him, and we knew it was our last vacation.

A new stage

Now Todd’s ALS has progressed so far that he’s too uncomfortable to leave our home at all. He no longer goes to Applebee’s, and he hasn’t been to church in a few years. No family vacations. No hockey games. No beach days.

Todd requires breathing support and gets winded if he talks too much. He’s so beaten down by the disease that he doesn’t even want to get out. And since he’s dependent on me for his care, I can’t go far, either.

At this stage, the disease is much harder for us to deal with emotionally. We still find little joys in life, but we aren’t active like we used to be.

ALS progresses so differently for people. For some, life with ALS is a sprint, and for others it’s a marathon. We’re in our 25th mile, and we are tired.

But our weariness isn’t entirely about this stage of disease progression. Todd has more function than my friend’s husband, for example. Todd can still speak, he only needs noninvasive ventilation, and he can move his neck as long as he’s properly positioned in his chair and parked on a flat surface.

Our state might be a matter of how long we’ve been dealing with disability, or it might be our personality and general disposition. Some people struggle to stay positive even during the early stages when they have independence. Others, like Todd, maintain their drive and passion for life even with severe disabilities. Todd remains fairly happy as long as he has projects to work on.

But he’s lost his drive. The main thing that keeps him going is his desire to see his kids grow up.

I’d encourage anyone who’s new to the disease to do as much as they can while they can do it, because life only gets harder — physically, for sure, but also mentally.

It was good for me to remember that we had a good run of at least 10 years of a pretty active life even after Todd’s ALS diagnosis. And my friend, the other caregiving spouse, was encouraged by how long we were able to be active.

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