A scary incident made us rethink emergency communication methods

How we adjusted our plans to improve safety for my husband with ALS

Kristin Neva avatar

by Kristin Neva |

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Our family had another close call recently that caused us to our reexamine our methods of emergency communication.

Due to ALS, my husband, Todd, is completely paralyzed in all his limbs and has low lung function. He is dependent on noninvasive ventilation to breathe and to talk. Without his ventilator, if he tries to talk too loudly or too much, his lungs lose tidal volume and he eventually stops breathing altogether.

We have caregivers on most nights so that I can get uninterrupted sleep for six hours, and then I take care of Todd during the other 18 hours each day. When the caregiver leaves at 5 a.m., she opens Todd’s bedroom door leading to the hallway so that he can call for me when he needs help. He tries to wait until 7, which is close to the time I need to get up with the kids. If he has trouble sleeping, he often uses his Alexa-compatible adjustable bed to change positions, saying, for example, “Alexa, ask my bed to raise head,” or, “Alexa, ask my bed to start massage.” Or he will ask the Echo device to play music to help him relax and get back to sleep.

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A close call

Early one morning last week, I partially awoke and heard Todd talking to Alexa. I rolled over, still half asleep, and then I heard an unusual sound: It was Todd’s voice amplified and played back on his Echo Show in his bedroom and on my Echo Show in the kitchen. He had asked Alexa to “make an announcement.” I didn’t quite understand what was said, but it wasn’t even 6 a.m. yet.

I jumped out of bed and hurried to his room.

His noninvasive ventilator was beeping, as it often does when there’s a high leak due to air blowing out of Todd’s mouth while he is still sleeping. But he was awake, and I realized that the ventilator hose was disconnected from the machine and he wasn’t getting any air. The bacteria filter had popped off, and I reconnected it to the front of the machine.

After taking a few deep breaths, Todd said, “That was scary.” He explained that at 5:45, he woke to the ventilator blowing hard and alarming, and he wasn’t getting any air. “My first instinct was to call for you,” he continued, “but I was afraid you wouldn’t hear me and I would lose my tidal volume. I tried not to panic, and tried to have Alexa call you.”

His call to my phone went straight to voicemail because I turn my phone off at night. That way, I’m not awakened by notifications for junk email, spam text messages, or Facebook messages and posts from people who have different sleep schedules.

Todd tried to call my home phone, but his Echo Show attempted to establish a video call with my Echo Show in the kitchen. We got a voice over internet protocol phone specifically for Todd to call me, and he calls that dedicated number frequently during the day while he’s set up at his computer. But apparently, Amazon assumes Echo users want to make inter-device video calls when calling a contact at “home.” Amazon knows who in Todd’s contacts has Echo devices.

Todd then asked Alexa to make an announcement, which was broadcast on both devices, but the volume wasn’t loud enough for me to hear. Finally, he asked Alexa to set the volume of his Echo Show to 10, and he repeated the announcement: “Need help.”

“If you didn’t hear that, my next step was to play ‘Thunderstruck’ by AC/DC on volume 10,” Todd said.

We were both shaken by the close call. Unable to go back to sleep, I lay next to Todd on his bed and we strategized on how we could prevent a reoccurrence, such as taping the filter onto the machine, or leaving my phone on at night.

After I got Todd washed up and out of bed, I searched the internet and figured out how to turn off notifications on my iPhone and still get phone calls from my contacts. Since then, I’ve been sleeping with my phone on and in my room.

Todd changed my contact information on his phone, which he has linked to his Echo device, to list the voice over IP phone as my “work,” which is fitting, and he changed the settings in his Alexa app to only allow calls to his favorites, which is only me. Now he has three ways to get my attention at night if needed — announcements or calls to either phone.

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.


Louise avatar


Thank you Kristin for sharing your cautionary incident as well as the love and strength your life story shows. Best wishes and appreciation to you and yours.

Alpi avatar


Dont even count on the Internet Connection!

Martha Whitaker avatar

Martha Whitaker

We just found out you can put a medical flag for your address on 911 calls. If a call comes in from my address the message pops up on their screen. Mine states that I have ALS and cannot speak clearly, but they could try and ask me yes and no questions. It also tells them that I have a DNR order. I can also text 911 (not available in all areas). We are also looking into an emergency call button.


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