While living with ALS, panic leads to stress again and again
When my husband's needs are urgent, my nerves have an automatic response
A friend who stopped by for a visit last weekend asked my husband, Todd, “Anything new?”
“Not really,” he said.
“So no more choking incidents?” she asked.
“There have been choking incidents, and Kristin has to clear my lungs every couple days,” he replied, “but you asked if there was anything new.”
These life-threatening moments are a part of our daily life with ALS.
Our friend followed as I wheeled Todd from his office down to the dining room for lunch. I started his noninvasive ventilator and placed his mask over his nose. Over the past couple of months, he’s preferred to eat while on breathing support.
As I turned to dish up his plate, Todd said with panic in his voice, “I’m not getting enough air. I need my nasal pillows adjusted.” I hurried to fix his mask, feeling my stress level rise. Todd explained that the openings on the tips of the nasal pillows had been pressing against his skin and restricting the airflow.
I’m cognizant of how my stress level always rises whenever he sounds panicked. It’s nearly a daily occurrence.
A conditioned response
Sometimes he’ll be talking and suddenly aspirate on mucus. In a halted whisper, as though he can barely get the words out, he’ll say, “Need to cough.” My stress level rises.
Sometimes when I’m turning him in bed, he’ll say sharply, “Watch my toes,” and I’ll notice that his toenails are digging into his Achilles heel of his other foot. He sounds panicked, because he’s in pain, and my stress level rises.
He used to gasp when I leaned him forward in his chair to place a transfer sling behind him. His sharp inhalation would raise my stress level. “You’ve got to stop,” I told him, “I’m not going to let you fall, and it stresses me out when you gasp.” He stopped.
Until recently, however, I hadn’t mentioned the other such instances because panic seems like an appropriate response for him when he’s in pain or can’t cough or breathe. But it’s stressful for me.
Todd says that sometimes he is panicked, but other times he’s not and is just trying to communicate a sense of urgency. “Maybe you could just say, ‘It’s urgent,’” I demonstrated in a low, monotone voice.
We laughed because my Eeyore voice didn’t match the urgency of not being able to cough or struggling to breathe.
Hearing panic in Todd’s voice is so alarming because he’s typically a rock and source of stability in so many situations.
The other day, as I was leaving for an appointment, I realized I had a flat tire, and I was deciding if I should try to pump it up and drive on it or if the risk of it going flat again on the way to the tire shop was too high. I called Todd, and he asked me to take a picture of it and text it to him. He was sure that I should have somebody help me put on the spare, and then the shop could evaluate if the tire could be fixed.
Likewise, when a squirrel scampered into our house, Todd was a source of emotional support and encouragement, and he provided suggestions to get the situation under control.
Life seems more manageable when Todd calmly reacts to situations. But when he’s shaken, I’m shaken, too.
That’s our reality in this ALS war zone. It’s exhausting to live with a constant undercurrent of stress. In these situations, I try to take a deep breath, and before I exhale, I take another breath, flooding my lungs with oxygen. And somehow, we keep going.
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.
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