Dysphagia: It’s Like Being Waterboarded 24 Hours a Day
One morning, Samantha Anderson woke to find that she could no longer swallow. Three-and-a-half years later, she's finally regaining her ability to eat.
Toast is an unlikely agent of death. But there you are in your kitchen on a Saturday morning, inexplicably choking on a mouthful, trying not to panic.
People who struggle to swallow can easily choke. They can breathe food or water into their lungs and develop aspiration pneumonia, or get so little food to go down the right way that they become dehydrated and malnourished. Their teeth may start to rot as the mouth's natural flushing system falters, while their emotional and psychological health begins to decay as they withdraw from public life.
Firm statistics on the prevalence of swallowing disorders are also sparse, but a recent survey in the Netherlands estimated that they affect as many as 1 in 8 adults.
Hospital neonatal units also routinely see infants struggling to suckle due to prematurity, disease, developmental delay or other disorder.
And yet, support groups are rare and the relatively small research community has only recently begun to make significant headway in improving the lot of a largely fragmented and voiceless population. For Anderson, who didn't fall into an obvious high-risk group, the problem was even more basic: her doctors initially told her that what she was experiencing was all in her head. One gave her Valium for what he assumed was stress. At her hospital bedside, she says, another concluded: "Sweetheart, I think you've just forgotten how to swallow." To get her confidence back, the doctor suggested that she get dressed up and go out with her husband to a nice restaurant.
This is the harsh reality of dysphagia: it's a major symptom of multiple diseases, disorders and injuries, it can strike both young and old, and yet its repercussions often flummox doctors and play out far from public view. Advocates call dysphagia an invisible disorder and a silent epidemic. The cruelty is compounded by how it distorts eating, which is not only a physical necessity but also a way for our highly social species to bond, relax and savor favorite foods.
Therein lies another major problem in acknowledging the havoc wreaked by dysphagia. We associate the breakdown of such a seemingly basic process with the end of life. It happens in hospitals, sure, and in hospices and beds that will soon be empty. It's much harder to understand how things can go so badly wrong for a apparently healthy 39-year-old who runs her own business, or a military veteran in his 20s, or a toddler who has barely graduated from his crib.
Here's a very rough simulation of what people like Anderson face every day. Stick your tongue out between your front teeth and gently bite down on it near the tip. Now hold this position while swallowing hard in quick succession.
Without the tongue's assistance, swallowing is suddenly much more difficult.
"If someone has Parkinson's and they're walking down the street, you can see the characteristic traits," German says. Not so for dysphagia, which she refers to as a "doubly hidden" disorder. Doctors often can't tell from a cursory inspection, and many patients underestimate or lack the wherewithal to understand how often food is going down the wrong way. But silent aspiration causes a dramatic rise in pneumonia risk.
How then, can the public hope to grasp the magnitude of the problem? As German puts it: "No one has telethons for kids with dysphagia."
"My wife and I went from having what I consider a very good, rich life-where eating out six times a month was not unusual, traveling around the world was not unusual-to a much more limited life," he says. "It's really pulled the social fabric out from under us."
Embarrassed, frightened and famished, she could no longer stand to be around others during mealtimes and even stopped working in her own jewellery gallery.
Modifying the diets of those with dysphagia seems understandable when you consider that bacterial pneumonia is one of the most common killers of older adults (some researchers blame aspiration pneumonia for a significant fraction of that toll). People with dysphagia not only breathe in more food and liquid but also tend to have worse oral hygiene, raising the risk that anything reaching their lungs will contain a dangerous glut of bacteria.