Getting Dental Work With ALS Is Often Complicated and Stressful
Last week, my husband, Todd, considered canceling a dentist appointment to get a crown placed over a broken tooth.
“Is it really necessary?” he asked. “What’s left of this tooth will probably last me for the rest of my life.”
Todd has had ALS for nearly 12 years, far exceeding the average life expectancy. He has had quadriplegia for eight years, and now his lungs are quite weak. He uses a noninvasive ventilator most of the time. Todd wasn’t full of self-pity or defeatism when he asked the question. He was being practical.
It’s hard for Todd to get out of the house. His neck is weak, and he doesn’t like to use the ventilator in public. He had an emergency appointment a couple weeks earlier, when the dentist ground down the tooth to smooth the rough edges, but the procedure to get a crown is much more involved. He was scheduled for the first of two appointments in which the dentist would prep the tooth, take molds and images, and give him a temporary crown.
Dental work is never fun, and even less so when one’s breathing is compromised.
I suggested we call the dental office. They looked at his file and said it was likely that the tooth would further crack without a crown, and that would require a more invasive procedure. Todd conceded that he should go.
A couple days later, I prepped for the appointment. I arranged for my mother to pick up the kids from school. I put pants on Todd, packed his padded head rest, and put his noninvasive ventilator in the travel bag.
Todd couldn’t transfer to the dentist’s chair, so he maneuvered his power wheelchair into a location that allowed him to tilt and recline with his head near the dentist’s tray. The dental assistant got a folding chair for me to sit on, and I’m glad I was able to stay with Todd because I had to translate his words a couple 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 whirring of the ventilator and the other office noises. And it is a little hard to understand words that contain an “n” or “m” when his ventilator is pushing a constant flow of air through his nostril pillows.
In the past, various medical professionals have looked to me to speak for Todd, as though him being in a wheelchair affected his ability to talk 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 anticipated. The dentist asked Todd to move his head left or right at times, but he wasn’t able to comply. The dentist said Todd’s tongue had a mind of its own, so to keep it from getting cut, he had to numb it.
As the dentist worked in his mouth, I watched Todd’s facial expressions closely for any indication that he was in need of more suction or was aspirating. I was ready to jump up, tell the dentist and assistant to move aside, and give Todd a manual-assist cough. I felt a heightened sense of vigilance because Todd was in a vulnerable position, leaned so far back and not able to clearly communicate his needs.
It wasn’t a pleasant procedure, but Todd survived it and the dentist did good work. I was relieved when we left the office. Now Todd just needs to go in one more time to have a permanent crown put on.
“I’m hoping that will be the last time I’ll need dental work,” Todd said.
“I’m glad you’re outliving your teeth,” I told him.
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Patty Munoz
It’s funny this came up because I just made an appointment to see my dentist to get a cleaning. I too have ALS, was diagnosed January 2021. I’m thinking it will probably be my last one, I hate thinking like that, but I have to face reality. I’m glad he was able to get the procedure done & he’s managed to live with this horrific disease so long. Hopefully I will have more time too. Good luck!