Navigating dental care for disabled patients with ALS

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Last week, my husband, Todd, considered canceling a dentist appointment to have a crown placed on a broken tooth.

“Is it really necessary? He asked. “What’s left of that tooth will probably last me the rest of my life.”

Todd has had ALS for nearly 12 years, far exceeding the average life expectancy. He has been a quadriplegic for eight years, and now his lungs are quite weak. He mostly uses a non-invasive ventilator. Todd wasn’t full of self-pity or defeatism when he popped the question. He was practical.

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It’s hard for Todd to get out of the house. His neck is weak and he doesn’t like to use the fan in public. He had an emergency appointment a few weeks earlier when the dentist ground down the tooth to smooth out the rough edges, but the procedure to get a crown is much more complicated. He was scheduled for the first of two appointments in which the dentist would prep the tooth, take molds and images, and give it a temporary crown.

Dental work is never fun, let alone when breathing is compromised.

I suggested calling the dental office. They reviewed her chart and said it was likely the tooth would crack further without a crown, which would require a more invasive procedure. Todd conceded he should go.

A few days later, I was getting ready for the appointment. I arranged for my mother to pick up the children from school. I put Todd’s pants on, packed his padded headrest, and put his non-invasive ventilator in the travel bag.

Todd couldn’t transfer to the dentist’s chair, so he maneuvered his power wheelchair to a place that allowed him to tilt and tilt with his head close to the dentist’s tray. The dental assistant gave me a folding chair to sit on, and I’m glad I was able to stay with Todd because I had to translate his words several times.

“He needs suction,” I told the dental assistant after Todd said so. His speech sounded clear to me, but his voice was too soft to be easily heard over the roar of the fan and other office noises. And it’s a bit difficult to understand words that contain an “n” or an “m” when his fan pushes a steady stream of air through his nose pillows.

In the past, various medical professionals have turned to me to speak on Todd’s behalf, as if the fact that he is in a wheelchair affects his ability to speak or think. I tried to make a point to decline to answer, or I would say, “Ask him.” But now I was needed to help him communicate.

The procedure took much longer than expected. The dentist sometimes asked Todd to move his head left or right, but he couldn’t comply. The dentist said Todd’s tongue had a mind of its own, so to keep it from cutting itself, he had to numb it.

As the dentist worked in his mouth, I watched Todd’s facial expressions carefully for any indication that he needed more suction or was suctioning. I was ready to jump, tell the dentist and assistant to step aside, and give Todd a manual cough. I felt an increased sense of alertness because Todd was in a vulnerable position, leaning too far back and unable to clearly communicate his needs.

It was not a pleasant procedure, but Todd survived it and the dentist did a good job. I was relieved when we left the office. Now Todd just needs to go one more time to have a permanent crown put on.

“Hopefully this will be the last time I need dental work,” Todd said.

“I’m glad you survived your teeth,” I told him.


To note: ALS News Today is strictly a disease news and information site. It does not provide medical advice, diagnosis or treatment. This content is not intended to replace professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of anything you 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 ALS issues.

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