It’s difficult to plan for the future with the varied progression of ALS

The other day my husband, Todd, told me he forgot to ask the caregiver to spray out his clicker tube for his HeadMouse. Because he’s paralyzed from ALS, he clicks his computer mouse by sipping and puffing on a straw, and we only need to replace it once a month as long as we spray it out every night with compressed air.

“But no matter,” he said wryly. “I’ve got a lifetime supply.” When he last reordered clicker tubes, he opted for 100 for $95 instead of 10 for $22. It’s surreal to think about, but given his current health and ongoing decline, he might only go through half of his supply.

Trying to plan even though we don’t have a firm prognosis is maddening. Todd was originally told he would have three to five years and that he should get his affairs in order. Five years came and went and the ALS progression continued, but Todd is still with us. There’s so much uncertainty. So many decisions rest on being able to predict the future, but that’s not possible with ALS because the progression is so varied.

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Does it make sense to renovate or to build an accessible home? For us, the renovation of our 1925 bungalow didn’t make sense. Any renovation that would have brought the house to a moderate level of accessibility would’ve ruined the character of the home, and we still wouldn’t have had an ideal setup. Furthermore, we didn’t live near family. So we sold it and built next to my parents.

Does it make sense to purchase an accessible vehicle? We decided to incur the expense so we could make memories with our children. That vehicle is now reaching the end of its useful life, having served us for 10 years in our snowy climate with heavily salted roads. If it dies, we’ve discussed just using a transport service since it’s become so difficult for Todd to be away from our home and he only needs to get out for medical care a few times a year.

Todd wondered if he should bother getting dental care, whether it was worth the trouble. He has continued with regular cleanings, but having work done has been more difficult now that he requires breathing support. After having a cracked tooth, followed by a crown, followed by a root canal, he’s become extremely diligent about flossing and brushing.

We might have a better idea of how much time Todd has with us if he’d continued having his breathing strength tracked, but we found the results of those tests too discouraging. He went for periodic testing until he got his feeding tube, because he had to have a forced vital capacity (FVC) above 50% to survive that procedure.

A couple years later, Todd had one additional test to qualify for Medicare to cover his noninvasive ventilation. At that time, his FVC was alarmingly low. I’ve done the math, calculating where his FVC might be if his progression has continued at the same rate, but I don’t know for sure that it’s advanced as much as I fear.

Even though he’s increasingly dependent on noninvasive ventilation, other spouse caregivers on social media say their loved ones have lived for years with low FVCs and noninvasive ventilation. So maybe that’ll be the case for us — or not. As hard as it is to live with uncertainty, knowing would be harder.

“I have one more bottle, and that’s it,” Todd said with an amused look, joking that it would be time to call it quits when he runs out of his favorite deodorant. A couple years ago he purchased four bottles of Aubrey’s Men’s Stock Herbal Pine Deodorant, what he thought would be a lifetime supply. The product is no longer available, and Todd hasn’t found a suitable replacement yet.

Todd says he keeps looking at it as though he has five more years — not all the time in the world, but some time, so we make tentative plans and adjust them as needed.

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