Navigating Interventions With the Ongoing Losses of ALS

My husband, Todd, began monitoring his breathing after he was diagnosed with ALS. We were told that he’d need to have surgery to insert a feeding tube before his forced vital capacity (FVC) dipped below 50%, and so he had it measured every few months at an ALS clinic.

The respiratory therapist held a mouthpiece up to Todd’s lips, and as he blew the air out of his lungs, she cheered him on: “Go, go, go!”

The results were normal during the first visit. We celebrated at the second visit when his score didn’t decline appreciably, and we were told the small drop could be a random daily variation. But every subsequent visit was disheartening because there was always decline.

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After it became too difficult to travel to the clinic, we had Todd’s lungs tested at a hospital just 10 minutes from our home. We tried to celebrate minimal declines. Todd chalked up the larger declines to having a slight respiratory bug or allergies, but he became increasingly discouraged and decided to slow the frequency of testing to every six months.

We tried to be positive if his FVC went down only a few points between visits. The news was bad, but not as bad as it could have been. We still had time. I’d track his breathing and project into the future. Where was he a year ago? If the progression continued at the same rate, where would he be in a year? In two years? How much time did we have? It’s a crazy way to live.

Todd kept going in for the tests because he wanted to make sure he scheduled his feeding tube surgery while he could still survive it, and he wasn’t keen on having the tube inserted any sooner than necessary.

Once he got the surgery, he quit having his breathing checked. It was too depressing. What was the point?

When he had his last test, he didn’t qualify for Medicare to pay for a noninvasive ventilator (NIV) yet. That was two years ago. If his FVC has continued to decline at the same rate, he would easily qualify now, but he doesn’t want to be tested.

It’s obvious he struggles more to cough, talk for long stretches, and project his voice. He says his breathing is fine, but I wonder if the headaches he sometimes wakes up with in the morning would be helped by NIV. In any case, I’d like to get the equipment and learn to use it before we are in panic mode.

I’ve suggested he go get the test. “If your breathing scores are too high to qualify for NIV, we’ll celebrate. If not, then we’ll get equipment that’ll help you.”

Maybe he’d feel better, and the equipment would improve his quality of life — if he could adjust to it. I’ve heard from some spouse caregivers who say their spouses didn’t end up using it much. I don’t know if Todd would get used to it, or if he would feel too claustrophobic. He wouldn’t be able to use his sip and puff HeadMouse, and so he’d need to figure out new adaptive technology to use his computer. Also, he prefers to sleep on his side and be rolled to the other side every hour or two. That might be tricky with hoses.

I think it’s worth trying. Many people with ALS get noninvasive ventilators, and they report that they sleep better and have more energy during the day.

Todd doesn’t want to go take the test. He gets anxious just thinking about it. He’s the one with the disease, so it’s ultimately his call.

We’ve been here before. I thought he should use a wheelchair sooner, but he wanted to walk as long as he could. When he finally got a power wheelchair, the disease had progressed to the point where he felt like it gave him more independence. Thankfully, he did not suffer a severe head injury in the stage when he was falling.

He wanted to wait to have the feeding tube inserted until his FVC was just above 50%, and I wasn’t pushing him on such an invasive procedure.

Thankfully, the feeding tube was already in place when he had an incident choking on pills, and so I began crushing them and giving them through the tube.

His independence actually has not been lost to intervention, but to the disease, and the intervention has made things better, but getting to the point of deciding to move forward with interventions is hard.

ALS is a disease of ongoing loss and change.

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