Surviving the Dentist with the New Normal of ALS

Living with ALS means learning to live with a whole new normal - - one that includes pondering whether or not to maintain regular visits to the dentist.

With the dismal prediction of living only two to five years following an ALS diagnosis, plus the high likelihood of needing to rely on a direct-into-the-stomach feeding tube - - which avoids the need for teeth altogether - - many ALS patients think, “The dentist? Why bother?”

And let’s be honest; who amongst us doesn’t secretly wish we could legitimately excuse ourselves from mandatory visits to the dentist anyway?

My visit to the dentist 

But it was a force play when two years after my diagnosis, one of my fillings fell out and I found myself begrudgingly sitting in the dentist’s chair.

While arranging for the appointment I thought back to getting that filling in the first place. It was “back in the day” of having to lean over and spit into a mini-water fountain next to my chair, staring into a glaring light above and never managing to open my mouth wide enough for the dentist’s satisfaction.

Of course, I’m well aware of advances in modern dentistry since that time, but now with ALS, my anxieties included not wanting to be one of those high-maintenance patients who require all sorts of accommodation. And, what if my ALS made things, well, difficult?

Nevertheless, I showed up and nervously stated my needs: “The chair … not too far back please, as that affects my ability to breathe. The spray … not too much water at one time please, as I have trouble swallowing.”

“Not to worry,” my dentist said while slipping a sporty pair of sunglasses over my eyes. Within seconds a soft rubber gizmo was placed into my mouth that felt like a mouthpiece for snorkeling. It simultaneously held my mouth open, held my tongue out of the way, suctioned away any wayward spray, and amazingly, I was breathing with ease AND relaxing.

“Everything OK?” he asked.

“Uh-huh, “I gurgled.

The process was quick, painless and I have to admit, anxiety-free!

Halfway through the procedure, a wave of gratitude washed over me. I felt gratitude and appreciation for having such a skilled and emphatic dentist.

[The device used to prevent water from entering my throat is a “dental isolation device”:]

Fast forward to...

A couple of years later, I began grinding my teeth at night which affected not only my husband’s sleep – – but was wearing down a few of my teeth (ack!). So, it was off to the dentist to repair a few teeth and be fitted for a mouth guard. Again, I worried that not being able to lean back in the chair (due to breathing and speaking issues), not being able to tolerate water in my mouth (swallowing issues) plus, pushing a walker, and wearing AFOs would lead to a disaster.

Over the next series of appointments, I learned that modern dentists can accommodate “just about everything.” Mine tilted me back, but a nifty neck pillow kept my throat upright. A stretchy plastic “shield” (called a dry shield) protected my throat from water and I held the suction tube so I could “chase” stray water droplets during the entire procedure.

The result was, that my teeth were repaired, the dentist made me upper and lower guards to wear at night, and I’ve worn them ever since. The grinding continues, but safely now.

Things to consider

When dealing with the aftershocks of receiving my ALS diagnosis, the thought of spending money at the dentist’s office when I didn’t know what my future held, just didn’t make any sense.  I felt I had much bigger things to worry about than my teeth. But in addition to maintaining good oral care to reduce the risk for gum disease and pneumonia (an infection in the lungs caused by bacteria living in the mouth, nose, and sinuses), the ALS Association recommends getting regular dental check-ups.

Taking good care of my teeth on a daily basis is a priority in my life living with ALS and I have an arsenal of tools to help me. Such as easy-to-hold flossers, single-tuft-brush, an electric toothbrush, and disposable flossers for on-the-go needs. Make dental care a priority in your life too. And don’t fear visiting the dentist; they have a new normal too and employ advances in technology and can accommodate all kinds of patient’s needs. It’s all part of learning to live well with ALS.

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Dagmar Munn
ALS and Wellness Blog

You don’t have to brush all of your teeth - - just the ones you want to keep

A version of this post first appeared as my column on the ALS News Today website.