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Dysphagia: it’s like being waterboarded 24 hours a day

Outside of the clinic or lab, however, conveying the seriousness of dysphagia can be surprisingly challenging. But silent aspiration causes a dramatic rise in pneumonia risk. How then, can the public hope to grasp the magnitude of the problem? Although he may never again get that chance, the year-old Texan is quietly determined to help younger people with dysphagia, such as Anderson, avoid a similar fate. After being diagnosed with a type of head and neck cancer in , he endured 36 rounds of radiation, eight rounds of chemotherapy and six surgeries.

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His cancer has recurred four times and twice, doctors gave him only months to live. In the most extensive operation, surgeons at the University of Texas MD Anderson Cancer Center in Houston removed his cancer-riddled lower left jaw and four teeth and replaced the bone with an eight-inch length of titanium and a portion of his right shinbone. They removed a chunk of his cancer-infected throat and replaced it with muscle and tissue from his right calf. They cut away part of his tongue and punched a quarter-sized hole in his soft upper palate to remove other tumours.

Steger now wears a prosthetic device called an obturator, which resembles a retainer attached to a pink plug that allows him to talk without most of the sound whistling away through the hole. Life has changed dramatically, however. With so many nerves damaged or removed, he has virtually no control over his swallowing and depends on gravity to guide liquid food safely past his airway and down his reconstructed throat. For the better part of a decade, he has eaten standing up, in isolation.

He still orders food on occasion; it makes others at the table feel more comfortable. Trips are especially tricky. For a rare week-long vacation in , to the Virgin Islands, Steger filled a suitcase with 40 pounds of carefully wrapped essentials:. He made similar calculations for his three-day trip to the Dysphagia Research Society conference, where he has become a regular since taking over as president of the National Foundation of Swallowing Disorders in Steger has sought to transform the foundation into an increasingly visible and growing community of patients and caregivers.

In exchange for a donation, attendees can also mix their evening glass of wine with a colourless xanthan gum thickener to get a taste of what a modified diet might be like. Thin liquids, such as water and wine, tend to flow quickly and splash around, meaning that they can easily lead to trouble if the timing of a swallow is even slightly off.

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Thicker liquids can slow down the process and keep everything moving together. Although in-person dysphagia support groups are still relatively rare and usually linked to nearby speech-language pathology practices, the foundation is working to build a wider network throughout the US. Patients from around the world have likewise sought out the foundation for crucial advice, support and commiseration. On its website, Anderson and others have shared similar stories of spending hours trying to consume enough calories and remain hydrated, of eating alone to avoid embarrassment or concentrate on swallowing without choking, of becoming isolated even from family members.

For many, the sense of loss can be nearly overwhelming, and the aroma of a once-favourite meal can reduce them to tears. The cumulative stress of dysphagia, as researchers are finding, can profoundly degrade the quality of life for both patients and their loved ones. Anderson avoided eating in the same room as her kids to keep them from worrying, but made sure she was always within striking distance of someone who could help in case of a choking emergency.

Eventually, her husband became her spotter for every meal, while friends awkwardly joked that they wanted to be on her diet. Embarrassed, frightened and famished, she could no longer stand to be around others during mealtimes and even stopped working in her own jewellery gallery. When doctors finally put her on a feeding tube to halt her spiralling weight loss, she felt full for the first time in months.

Angela Dietsch is well acquainted with the strong desire — the desperation, even — that otherwise healthy people with dysphagia have to taste pizza, a doughnut or another reminder of a once-normal life. That leaves the jaw, chin and neck dangerously exposed to battle injuries. For many of these young men and women, the idea that they can never again eat a solid meal with their families is unfathomable.

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She stumbled upon one of the more intriguing possibilities for improving their lives while studying xerostomia, or chronic dry mouth. Xerostomia is caused by decreased saliva flow and can make dysphagia worse. In an experiment exploring whether different tastes might increase saliva flow, Dietsch repurposed taste strips that mimic real foods but dissolve safely on the tongue. For her experiment with the veterans, Dietsch tried strips with glazed doughnut, buttered popcorn, lemon-lime and icy mint flavours.

The glazed doughnut strip — the biggest crowd-pleaser — yielded the most saliva production.

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The veterans began requesting — and fighting over — the strips, including ones flavoured like margarita and honey-bourbon. Some even used them during family dinners. Amazed, she realised that the strips could provide a low-risk strategy for stimulating taste and aiding dysphagia therapy. The strips also might provide a big psychological lift during communal meals such as Thanksgiving or Christmas.

What if one strip was turkey-flavoured, another reminiscent of relish, and a third like apple pie? It might sound ridiculous, Dietsch says. One of the only commercially available options, apart from breath fresheners, is a line of chocolate, watermelon, strawberry and mango tasting strips sold as adult novelties to aid oral sex. The gung-ho year-old, a father of a preschooler and two grown children, remains an avid bicyclist despite a series of accidents that left him with five broken ribs, a titanium plate in his neck, and a surgically repaired right hand.

The radiation therapy that beat back his tonsil cancer also undermined both his swallowing and speaking abilities, once leading a hotel clerk to assume that he was deaf. Others have accused him of being drunk. Undaunted, he still teaches classes on business and law and hopes to ride across Honduras in to raise money for charity. The dilemma faced by McCloskey and others has posed a major controversy for the field.

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.

Slovarp, however, maintains that many people with dysphagia who are otherwise healthy and active are at low risk for pneumonia even if they do aspirate relatively small amounts of food. Frequent oral care can also reduce the threat.

Dramatically restructuring their diet, however, could do more harm than good, Slovarp says. As a small concession, McCloskey tears the lefse into little pieces before eating it. A feeding tube, he says, would be a sign of defeat. That defiance may have come at a cost. He can no longer tolerate spicy food because it burns his throat, perhaps due to tissue damage from the radiation treatments. The same is often true for red wine, beer and liquor, but he still has them on occasion, including a hot toddy some nights. Whether it takes the form of lefse or pizza or toast, bread is loved around the world.

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It is also the arch-enemy of those with dysphagia, as one of the hardest of all foods to swallow. Tests have found that as a person chews bread, it tends to readily absorb saliva that would otherwise lubricate the throat. It also forms into hard, sticky balls that can prevent a smooth journey on to the oesophagus. Ltd began selling an engineered substitute called iEat Bread , which has been treated with enzymes to alter its physical properties. The reformulated bread is being marketed directly to consumers with chewing or swallowing impairments and to medical institutions and nursing care homes.

Although it looks, feels and tastes like the real thing, their experiments suggested that it absorbs virtually no saliva, is easily mashed up by the tongue, and is roughly only one-fifteenth as sticky as normal bread.

Led by the German company Biozoon, the consortium unveiled 3D-printed peas and pasta in The group followed up with the first fully 3D-printed meal, roast pork with gnocchi, in October Similar meals may be commercially available within three to five years, according to the company. Better-looking food may help ensure that people with dysphagia eat enough to remain nourished and hydrated — especially those who have lost their sense of smell or taste, or all enjoyment from eating.

Crary says the provocative finding raises the question of whether the dehydration resulted from people eating less of the modified food because they found it unappealing or from some other biological response to the food itself. For people who lack the strength in their throat muscles to swallow anything at all, one of the most eagerly anticipated advances closely resembles the kind of stud earring that daring youngsters might use to pierce their necks.

When the user lets go of the piercing, the valve snaps shut. After first implanting the device in a Uruguayan doctor in , Belafsky has launched a phase I clinical trial. Other groups are working to limit the collateral damage wrought by radiation therapy, or trying to develop new ways of dilating the oesophagus to help food move through an abnormally constricted space. No single approach is likely to help everyone, except for one: a basic awareness of how swallowing disorders can afflict young and old, active and moribund.

For Anderson, after months of misery, an alert specialist finally linked her seemingly sudden dysphagia to a severe case of shingles that had damaged four of her cranial nerves — a viral infection that she initially thought was little more than painful cold sores in her left ear.