Years after diagnosis, we’re still learning how to best manage ALS

The other day I was using the brush hog on my tractor to mow a field when I noticed that the air conditioning wasn’t working. It was hot in the cab, but not unbearable, so I continued mowing, thinking I’d get it checked the next time I had the tractor serviced.

The next day I was mowing another area when I noticed the tractor was making a funny noise. I looked down at the dash and saw a thermometer flashing, a sign it was overheating.

I turned the machine off and opened the hood. The coolant reservoir was full. I’m not very mechanical, and I didn’t see anything amiss, so I called my husband, Todd.

Todd is paralyzed from ALS, so while he can’t help me physically, he’s a good coach when I have a mechanical problem.

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“It could be the coolant level or there’s dust and debris on the radiator,” he said. “If one of those doesn’t fix it, you have a bigger problem.”

I’d already checked the coolant level, so Todd looked at the tractor manual and texted me screenshots of instructions to remove the debris screens. I cleaned the radiator and screens with a leaf blower and garden hose, and while I was at it, I checked the air filter. That was dirty, so I replaced it and cleaned out a few acorns a squirrel had stored in the filter compartment.

I started the tractor and did some more mowing. It didn’t overheat, and the air conditioner worked. I’m out of my element with tractor maintenance, so I felt a sense of victory in having solved the problem without needing to call for service. With time and experience, I’m learning.

It reminds me of how Todd and I have figured out how to manage life with ALS, mostly through time and experience. Sadly, many people don’t have time to learn much because the disease can progress so quickly.

Gathering knowledge

I’ve found help on Facebook groups for caregivers of people with ALS, and I’ve also shared information with those groups. Todd and I have a YouTube channel called ALS411 to share what we’ve learned, but we’ve kept learning new things about the various topics we’ve covered.

For example, seven years ago, we made a video about toileting, and I explained that when Todd was in bed, I helped him urinate by turning him on his side and using a urinal attached via tubing to a bag I put on the floor. Sometime after that, a helpful nurse showed us how to use a standard Carex male urinal while Todd was on his back. I was amazed at how much fluid it could hold even when it was laid flat, and it was much easier to use. We included that update in a second toileting video.

In another video, I explained how I performed a manual-assist cough on Todd, but that video is from more than four years ago, and over the past two and a half years, he’s used noninvasive ventilation. We now have a “sick” setting on his ventilator that pushes a lot of air into his lungs, and the manual-assist cough is significantly more effective at getting the mucus out when used in conjunction with the ventilator.

On the topic of the ventilator, we made a video about how we’d used the two-setting ResMed Astral 100, but since then, the durable medical equipment supplier upgraded Todd to the Astral 150, which has four settings. One of them, “day,” gives him a lot of air, but makes him take bigger breaths after he pauses to talk. Another setting, “speak,” allows him to carry on a conversation. His “night” setting allows his breathing to slow down while he sleeps, without trying to push too much air into his lungs and rouse him awake. The fourth setting is used to clear his lungs.

Todd often passed on using his ventilator, except when he was on his computer or in bed, because he found it too cumbersome to have it in its travel bag with long tubing hanging on the back of his wheelchair. But he can’t have a conversation without it, so for our daughter’s high school graduation party, he decided to put the ventilator on his wheelchair tray and attach his mask with a short tube.

“I can’t believe it took us two years to figure that out,” Todd said.

That might seem like a small thing, but when life is so difficult, small things make a difference.

As much as we learn, we’re always figuring out better ways to manage ALS.

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.