Things Can Change Quickly With ALS
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 phone, which wasn’t making calls. He was having a good day, but if his lungs filled up, he would need to call for emergency help. So, I dropped the kids off to get a lane and drove home, about 12 minutes away.
Other than that, 2021 ended well. I returned to the bowling alley and joined the kids. We had fun cheering one another on, and I was happy to have broken a score of 100 during my second game. When we arrived home, I made tacos for dinner. After we ate, Todd coached our daughter and her friend on making caramel corn.
Todd’s nighttime caregiver arrived and got him ready for bed, and I got ready for bed, too. The kids cheered in the new year, and feeling upbeat, I went to give Todd his first kiss of the year. The festivities had gone well, and I felt a sense of victory in being able to have a normal, fun evening with the kids and their friends.
We ended the year with a celebratory feeling, but with ALS, things can change quickly from one moment to the next. Just minutes into 2022, we were hit with the heaviness of life with ALS.
As I was climbing into bed, Todd’s caregiver called out for me. “Todd needs your help,” she said. His lungs had filled up after she had transferred him into bed.
I tried to give him a manual assist cough while he was on his side, but the rattling in his chest wouldn’t loosen. So, I rolled him onto his back and tried again, but it wasn’t working.
He asked me to use the cough assist machine, which is on a rolling cart. I unplugged it from its normal location in his office and rolled it next to his bed. We tried to clear the secretions, but it didn’t work.
Todd complained that he couldn’t catch his breath. The rattling in his chest was getting louder, but the secretions weren’t coming up. He wanted to get out of bed and back into his chair.
His caregiver and I worked as a team to get the sling under him. She lifted him using the electric overhead lift, and I got his chair into position.
After he was in his chair, I moved the cough assist machine around to the other side of his bedroom. Meanwhile, Todd was becoming claustrophobic, because he couldn’t breathe through his nose. He asked his caregiver to get the suction machine and remove the mucus. We then used the cough assist machine with more success, and the secretions moved up.
Todd asked for another manual assist cough, which finally cleared his lungs.
I finally made it to bed after instructing the caregiver to wake me if Todd needed my help again.
I awoke and checked on Todd. He asked me to adjust his head, hands, and legs, which I did, and then went back to bed. I was up and down with him a few more times that morning until we finally got up for the day.
Todd said it had been a rough night. After his caregiver transferred him back into bed, he had more secretions in his upper respiratory system that he was able to clear himself. He had anxiety and was restless for an hour. He managed to get a short stretch, but then awoke needing to be rolled to the other side. Then his lungs started rattling again.
Todd worked with his caregiver to clear his lungs while he stayed in bed. She lightly pressed on his belly in sync with his breathing and feeble attempts to cough, and he slowly worked the secretions out of his lungs.
Todd’s doctor has ordered a noninvasive breathing device, which hopefully will arrive soon and help him on nights when he feels like he can’t fill his lungs.
In 2022, we will have days when life is good, even with ALS. We will laugh. We will look for beauty in nature and the human experience. We will make the most of our time together. And we will try not to dwell on the reality that in life with ALS, things can change at any moment, and we will just need to hang on for the ride.
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