Living with ALS means learning to live with a whole new normal. For example, before ALS, my old normal included diligently following recommended guidelines for annual health screening, such as monitoring bone density. This test (thanks to modern technology) is a simple x-ray of the lower spine and hips in order to detect weakened bones, future fracture risks and osteoporosis.
At one of my first visits to the ALS Clinic, I asked about bone density testing. Patiently, my neurologist explained that ALS eventually would put me in a wheelchair. This would cause my bones to become brittle and weak, which meant there was no need to monitor the decline. So, bone density testing was off the to-do list. Welcome to MY new normal!
Then there is the question of maintaining regular visits to the dentist.
Along with the dismal prognosis of living only two to five years following diagnosis, there’s also the high likelihood of needing to rely on a direct-into-the-stomach feeding tube, which avoids the need for teeth altogether. This could cause many who live with ALS to hold the opinion, “The dentist? Why bother?”
Let’s be honest; who among us doesn’t secretly wish we could legitimately excuse ourselves from mandatory visits to the dentist?
But it was a force play when one of my fillings fell out, and I found my self begrudgingly sitting in the dentist’s chair.
I remember 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 anxiety stemmed from not wanting to be one of those high maintenance patients who require all sorts of accommodation.
However, I’ve learned to speak up and state my needs: “The chair … not too far back please, as that affects my ability to breathe. The spray … not too much 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!
Half-way through the procedure a wave of gratitude washed over me. I felt gratitude and appreciation for having such a skilled and emphatic dentist. I felt gratitude this dental visit was happening in 2017 and not the year of my memories.
I also was grateful knowing that if I have to live with ALS that it’s happening in 2017, a time when advances in technology and accommodations help me deal with its many challenges. A time when medical research is bringing us closer to discovering valid treatments, medicine and that holy grail … a cure for ALS. That would create a whole new normal, when a simple screening test is all that is needed to detect, treat and prevent ALS.
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