What holding on looks like after 16 years of living with ALS

Last summer, a large limb on our old mountain ash died, and this spring, our teenage son cut it off, leaving only one limb coming out of the stump of a once beautiful tree.

“Is it time to take it down?” I asked my husband, Todd.

“I think so,” he said. “Last summer the leaves shriveled up by July, and it never produced fruit.”

I hesitated. I wrote a column three years ago comparing life with ALS to that old tree. If we cut it down, what would that be saying?

“We should order sod,” Todd said. We had already planted a small mountain ash at the base of the hill and planned to turn the space where the old tree stood into new lawn once it was gone.

So I called a local landscaping company and ordered half a pallet of sod. It’s scheduled to come within a couple of weeks, so we waited to cut down the decaying tree.

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Todd’s respiratory therapist dropped off supplies last week. Todd’s on noninvasive ventilation nearly 24/7, and his breathing continues to weaken. We suspect his forced vital capacity would have reached zero a year ago already, if it could be measured at all, based on the trajectory of past lung function tests. We are both surprised that he’s been able to hang on.

I asked the therapist about other cases of ALS she’s seen, trying to get an idea of how much time Todd might have left. She explained that because Todd’s bulbar area hasn’t been greatly affected yet and he can still swallow, the machine is able to give Todd what he needs.

“So it’s possible we still have years left?” I pressed.

She couldn’t give a definite answer to that question because there are so many things that could go wrong. Other organs could fail. He could aspirate and get pneumonia. Everyone with ALS is different, but it’s possible the noninvasive ventilator could continue providing the support he needs to keep going for some time.

I felt some relief to hear her say that Todd’s death may not be imminent. Living with the feeling that he could go at any time is stressful, and while it is true that mucus could block his breathing, we’ve been clearing that successfully for years. We’ve thought we might be nearing the end every time he’s gotten a cold in the last few years, but thus far he’s managed to pull through.

Todd said it was kind of discouraging to hear that he might continue on in that state indefinitely, because life with ALS progression is so hard. But he is hoping to see our son graduate high school, which is two years away. I don’t know if it’s likely, but it might be possible.

I remembered 16 years ago, when Todd was diagnosed, our son was just a baby, and our daughter was only 4. At that point, with a two-to-five-year life expectancy for ALS, we thought our children might not even remember their father, and Todd considered whether or not he would want to get a tracheotomy.

“He could always go off of it if it was too hard,” I told the neurologist after he listed some of the challenges of living with invasive ventilation. The doctor said that removing it after getting it is a harder decision to make than not getting it to begin with.

At the time, I felt offended by his bluntness, but now, after Todd’s had the noninvasive ventilator for four years, I understand. It would be a difficult decision to discontinue breathing support, even though there are days when we are both tired of life with ALS.

We still have good days and even more good moments, though.

Over the last few weeks, Todd has been coaching our son as he refurbishes an old fishing boat. The two of them have been watching YouTube videos and discussing the best way to complete the project. Todd spent hours out in the sun watching our son work on his boat last week.

A chipping sparrow perches in columnist Kristin Neva’s dying mountain ash tree. (Photo by Kristin Neva)

That same week, our old mountain ash managed to blossom. This morning, a bluebird landed among the flowers, a northern flicker knocked on the stump looking for insects, and a chipping sparrow flitted from branch to branch.

I feel torn about cutting down that old tree. Maybe I should plant the sod elsewhere. It’s hard to give up when there’s still life and beauty.

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.