Learning New Limits With Ongoing Decline

Kristin Neva avatar

by Kristin Neva |

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I’ve been worried about leaving my husband, Todd, who has ALS, alone after his close call with his breathing last week, but he said he would be fine while I ran to town. I needed to pick the kids up from school and take our daughter to a dentist appointment.

Todd didn’t want me to connect him to the Astral noninvasive ventilator because he wanted to use his dictation software. He’s still getting the hang of talking with it on, timing his words between breaths. When he’s using the Astral, the accuracy of his dictation drops from about 99% to 80%.

When I left, Todd was waiting to connect with a customer service agent on chat. He was planning to cancel some services he didn’t think we needed.

After getting our teenage daughter checked in at the dentist, I drove our son home and checked on Todd.

I found him connected to the Astral.

“What happened?” I asked. “Are you all right?”

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“I’m fine now,” Todd said. He explained that the representative on the chat couldn’t help him, so he had to call customer service by phone. He strained to speak loud enough to be heard, but he ran out of breath, and then he started getting worried because he could take only very shallow breaths.

He thought he could hold out until I got back, but he checked the Find iPhone application on iCloud. He saw that I was still in town at the dentist, so he called our neighbor, who is one of his caregivers.

“I need help now,” he managed to say.

Whether or not she heard him clearly, she knew there was only one reason he would call, so she said, “I’ll be right there.” And within a couple minutes she had the Astral connected so Todd could breathe deeply.

“I need to learn my new limits,” he said.

Another crisis averted, but again I’m left shaken by Todd’s increasing fragility. The limits keep changing with ALS.

Months after his diagnosis, Todd found that if he typed all day at work, he didn’t have strength to feed himself dinner that evening.

The winter after his diagnosis, he cleared snow from a blizzard, but that evening he experienced severe leg cramps. He screamed in anguish, and I pressed, pushed, and pulled on his legs, praying the pain would stop.

He had to stop mowing grass after he fell to the ground. No one was home, and after it got dark and cold and coyotes started to howl, Todd rolled 150 feet back to the house. He managed to open the door with his foot, and I came home to find him lying on the living room rug.

The most apparent setbacks to his independence occurred while he was losing the use of his arms and legs. After he had been in his wheelchair for some time, people would ask, naively, if the disease had stopped progressing. But ALS is relentless, and Todd has had to continue to learn new limits.

A weaker neck hampered his mobility. Weaker lungs prevented him from being able to cough on his own. A softer voice kept him from being heard in a crowd.

And now we need to figure out how to manage a new limit to Todd’s ability to speak and breathe.

When friends stopped by to visit, he reclined in his chair and spoke softly so he could talk without becoming winded. Before I left to pick up our daughter from dance that evening, I showed his friend how to put on the Astral just in case he needed it while I was gone.

With each stage of the disease, we must come to terms with a new reality as the losses keep coming.

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.


Trevor Bower avatar

Trevor Bower

Thank you so much for your columns. They answers so many of my questions of what to expect for the future and in many cases the present. I do not have a caregiver and am feeling my way down the path into the dark future that lies ahead. The progression has been quite slow for me. So far my legs are showing most of the effects with me graduating from a cane seven years ago to a walker, to a Rollator and this past year a wheel chair. Please keep those wonderful columns coming.

Kristin Neva avatar

Kristin Neva

Thanks Trevor. I'm glad the columns are helpful. Todd's relatively slow progression has given us time to prepare. I hope you can find the resources you need for the future.

Maggie Broeren avatar

Maggie Broeren

Thank you for writing these posts even when you and Todd are continuously challenged by the ALS beast which never gives you a break. I’m also grateful for your useful ALS 411 videos.

Kristin Neva avatar

Kristin Neva

Thanks Maggie. I'm glad the ALS 411 videos are helpful!

Jenny wu avatar

Jenny wu

Thank you for sharing your day to day story. I am trying to get as much info as possible. My lovely sister was diagnosed with ALS two days ago.

Kristin Neva avatar

Kristin Neva

I'm sorry to hear of your sister's diagnosis, Jenny. It is so hard to try to wrap one's mind around. Good for her to have your support--help from family is needed through every stage of the disease.

Len McGee avatar

Len McGee

Thank you Kristin,
Maggie Broeren is a very special friend to me and whole lot of people.
I will subscribe and keep reading!


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