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We often feel isolated now that my husband, Todd, is homebound because of <a href="https://alsnewstoday.com/what-is-als/">ALS</a>. He&#8217;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 <a href="https://codenamesgame.com/" rel="nofollow">Codenames</a>, 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.”
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<h3>Holding on to all he can</h3>
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&#8217;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 <a href="https://nevastory.com/rolling-home/">he&#8217;d actually fallen outside</a> 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 <a href="https://alsnewstoday.com/columns/breathe-stress-relax/">one Sunday morning</a> at church when Todd&#8217;s lungs weren&#8217;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&#8217;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&#8217;d wait for a lull in pedestrian traffic and then back his accessible van onto the sidewalk near the doors. At times, I&#8217;d have to push Todd’s wheelchair to help it get through the snow.
He kept going out until he became <a href="https://alsnewstoday.com/columns/breathing-easier-support-noninvasive-ventilator/">dependent on his noninvasive ventilator</a>. 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&#8217;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&#8217;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.
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Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis</a>, or <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>. 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.

How my husband keeps pushing the limits with ALS

Last week, I was in a grocery store and noticed another shopper had an occasional cough and wasn’t covering his mouth. I gave him wide berth as I gathered the items I needed. When I had found everything on my list, I made a beeline for the checkout line, and wouldn’t you know, he stood in line right behind me.
I inched forward, trying to keep space between us and hoping for the best. Maybe it was spring allergies.
Perhaps the only good thing about <a href="https://alsnewstoday.com/columns/7-ways-als-life-is-similar-pandemic/">life during the pandemic</a> — at least something that I was grateful for — was that it was not socially acceptable to be out and about with a cough. However, it seems like life is returning to normal, so I’m hypervigilant. More than once, I’ve been in line at the grocery store when I’ve observed a cashier with a cough. I’ve gotten out of line “to get one more thing” and then queued at a different register. And I’m fond of self-checkouts for the same reason.
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I have to stay healthy because I need to take care of my husband, Todd, who is paralyzed from <a href="https://alsnewstoday.com/what-is-als/">ALS</a>. He is <a href="https://alsnewstoday.com/columns/stressful-night-dealing-husbands-breathing-difficulties/">unable to cough up mucus from his lungs</a> due to ALS having weakened his diaphragm and rib muscles. His last few colds have been scary. I’ve needed to use a cough assist machine and <a href="https://www.youtube.com/watch?v=ITcMaevMO04">manual assist coughs</a>. He took medication to thin the secretions, and I held my breath, hoping he’d pull through and it wouldn’t turn into pneumonia.
We take many precautions because any virus is a serious risk for Todd. Friends and family know not to visit if they are sick.
We ask his <a href="https://alsnewstoday.com/columns/accepting-help-certified-nursing-assistant-caregiving/">night caregivers</a> to cancel, even on short notice, if they have any signs of illness. Sometimes a caregiver will text me to let me know she had exposure to an illness. Todd and I discuss these situations. If the exposure was minimal, we have the caregiver come, as it doesn&#8217;t seem any more risky than hanging out with <a href="https://alsnewstoday.com/columns/help-kids-cope-death/">our kids</a> who are exposed to viruses at school every day. If a bug is circulating in their home, then we cancel.
If our children catch a bug, Todd quarantines in his office and bedroom, and I bring meals to him.
However, we want to live life as normally as possible, especially for the kids. They attend school and other activities. I try to get out, too, for my own mental health. Even a trip to the grocery store makes me feel less isolated because I often run into people I know in our small town. Balancing risk with living life is an ongoing challenge.
<hr />
Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis</a>, or <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>. 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.

Tag: risk

How my husband keeps pushing the limits with ALS

As an ALS caregiver, I’m constantly evaluating cold, flu, and other risks