How my husband keeps pushing the limits with ALS
In the face of risks and disease progression, he's trying to hold on to all he can
We often feel isolated now that my husband, Todd, is homebound because of ALS. He’s paralyzed with weak lung function, and it’s just too difficult for him to get out. So we were delighted when some friends planned a game night with us at our home last weekend. We played Codenames, which was a lot of fun because we enjoy word games, and it worked well for Todd because it doesn’t require him to hold cards or manipulate game pieces.
The night was a welcome break from our monotonous routine and an opportunity to connect with others, but when the group left, Todd looked and sounded exhausted.
“Was that too much?” I asked him as I helped him in the bathroom before his nighttime caregiver arrived.
“Three hours might’ve been a bit much,” he said, “but it was worth it.”
Holding on to all he can
Todd has pushed the limits throughout the course of his disease. He kept walking long after I thought it was safe. I worried about him getting a bad head injury, so I implored him to use a wheelchair, but he didn’t want to do it until he absolutely had to. He kept walking even after he fell and bloodied his face, although he did start using a three-wheeled scooter more around the yard.
He continued to mow grass on his zero-turn lawn mower. Once I was nervous for his safety when the kids and I had something planned for the evening and he was set on mowing the yard. He insisted that he’d be fine, but when I returned home, he was lying on the living room floor.
“At least you fell in here,” I said when I arrived home.
He sheepishly told me that he’d actually fallen outside trying to climb back onto the lawn mower after opening the shed door. The sun had set, the night was getting cold, and coyotes were howling. He barrel-rolled back to the house, kicked the levered door handle to open the door, and shimmied and rolled into the house and onto the living room rug, where he waited until I got home.
After he got his wheelchair, he continued to go to church and out to restaurants, even though his lungs sometimes filled with mucus and I’d have to give him manual assist coughs.
I was scheduled to lead music for preschoolers one Sunday morning at church when Todd’s lungs weren’t doing well. I cleared him out and then headed upstairs to sing with the kids after instructing our son to come get me if his dad needed help. When I got done with the music, Todd was out in the lobby. He explained that his lungs had filled up, and he’d asked a firefighter friend to help him clear them.
Todd kept pushing the limits. He continued to watch the kids in their choir, band, and stage performances, even when it was difficult to traverse snow-covered ground in his power wheelchair. I’d wait for a lull in pedestrian traffic and then back his accessible van onto the sidewalk near the doors. At times, I’d have to push Todd’s wheelchair to help it get through the snow.
He kept going out until he became dependent on his noninvasive ventilator. He doesn’t like to be out in public with it on, and his neck bounces too much to be comfortable riding in our van.
But he still pushes his limits, although he has more of them, and they’re more severe.
He continues to eat, even though I sometimes need to push on his abdomen to clear food when he chokes. Todd rarely talks on the phone anymore because he gets too winded even with his ventilator, but he still talks to his mother about once per month, because she’s his mom.
Todd could give up things sooner and avoid risk, but he wants to hold on to all that he enjoys for as long as he can.
Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.
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Debra
Thanks for your words. They got my imagination going.
Dajia
Thank you for the article, Kristin. It's nice not to feel alone in this journey. I relate very much to your situation and appreciate your candor and insight.
Monika
Your words are so helpful. My husband was diagnosed a month ago. We have 2 kids. No one understands what this is like, and it's so helpful to read about your experiences so I know what to expect and what things we will still be able to do. Thank you from the bottom of my mama heart.