text: © Aaron Tilley and Kerry Hughes 
   
   Whether it takes the form of lefse or pizza or toast, bread is loved around the world. 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. Unadulterated white bread purée, although easier to swallow, looks a bit like cereal left overnight in a bowl of milk and tends to be at the low end of what researchers call the “meal appeal” spectrum. 
   
   In October 2015, Japan’s EN Otsuka Pharmaceutical Co. 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. At the dysphagia conference in Chicago, Shingo Umene and Masahiro Hayashi explained how they and colleagues in the company’s Tokyo lab had put iEat Bread through its paces. 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. 
   
   
   
   Bread is the arch-enemy of those with dysphagia 
   
   Other researchers are experimenting with moulds that shape purées into more natural-looking dishes such as sliced roast in Burgundy sauce with asparagus or currywurst with tomato mousse. Efforts like the European Union-funded PERFORMANCE consortium have taken the concept one step further by using 3D printing to design nutritious and appealing foods with a gel-like consistency. Led by the German company Biozoon, the consortium unveiled 3D-printed peas and pasta in 2014. The group followed up with the first fully 3D-printed meal, roast pork with gnocchi, in October 2015. 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. There’s another twist: Michael Crary and Giselle Carnaby recently discovered that in the week after a stroke, people who were put on a modified diet of thick liquids or puréed foods were more likely to become dehydrated than those who remained on a regular diet. 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. If it’s the former, the research could add new weight to the importance of palatability. 
   
   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. Every time a user of Belafsky’s Swallow Expansion Device pulls this titanium rod, a connected plate embedded in the throat mechanically moves the larynx forward and opens the upper oesophageal sphincter to allow food or liquid to move into the oesophagus. When the user lets go of the piercing, the valve snaps shut. After first implanting the device in a Uruguayan doctor in 2010, Belafsky has launched a phase I clinical trial. 
   
   Belafsky and colleagues are also experimenting with nerve-aiding medications such as the Alzheimer’s drug donepezil, and are running a clinical trial to determine whether muscle stem cells could help strengthen damaged tongue muscles. (Steger’s foundation raised $40,000 in 2013 to support the latter effort.) 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. With the mystery solved, she turned to Steger’s foundation for help in how to address her condition and was referred to Belafsky for critical medical advice. 
   
   During a phone consultation that Anderson describes as “the turning point in my life”, Belafsky recommended a high dose of donepezil to improve the function of her damaged nerves. With the drug and the safety cushion of her feeding tube, Anderson embarked on a regimen of strengthening exercises, like the tongue-biting Masako Manoeuvre, and training to practise her new swallowing technique, the manual tongue-push method commonly used to swallow pills. 
   
   A few months after weaning herself from her feeding tube, Anderson is slowly regaining her strength. Bad choking episodes happen only once a week instead of nearly every day. She can eat solid foods as long as each bite dissolves in a follow-up sip of water, she keeps her chin tucked while chewing, and she holds her breath while swallowing to protect her airway (always after an ‘in’ breath in case she needs to cough). Her sense of taste is improving as she regains sensation in the back of her tongue and throat, but she must still keep track of each bite. Her husband still eats every meal with her as a precaution. 
   
   The joy is returning, and she and her husband have dared to consider a work-related relocation to Connecticut. “It’s my life and I’m desperately trying to get it back,” she says. Her case has also created a ripple effect in Australia. Some of the doctors who initially doubted her condition have since told her they’ve seen other patients with similar symptoms – even another case of shingles-induced dysphagia – and now have a better sense of what to do. 
   
   On a Thursday three-and-a-half years after her swallow disappeared, Anderson is starting her day with a breakfast of oatmeal, strawberries, blueberries and milk, washed down with two-and-a-half glasses of water. She’s one of the lucky ones, perhaps: her diagnosis, therapy and determination are helping re-establish a measured, more normal morning routine. But her breakfast is more than just sustenance. It’s another step in regaining what she never imagined she could lose – and a simple pleasure that she savours all the more. ||||| SAMANTHA Anderson had a busy weekend ahead, making jewellery in the workshop at her Brisbane home while her husband looked after their three kids. 
   
   She had taken her breakfast, peanut butter on toast, to eat in the studio, but for some strange reason, she couldn’t get a single bite down. 
   
   “I went to swallow and I couldn’t,” she told news.com.au. “It didn’t happen. I choked. 
   
   “I was confused, and ended up having to cough it out. I tried a few more times. That gulp just didn’t happen.” 
   
   Sam was shaken, but brushed off what had happened — until she couldn’t eat again at lunchtime, and dinner. By the end of the day, she was starving. 
   
   “I told myself, ‘don’t think about it, you’re only going to make it worse,’” said the 40-year-old. “I didn’t want to let myself get fearful for the next mouthful.” 
   
   But Sam’s frightening problem wasn’t going anywhere. 
   
   The doctor told her she was stressed and needed valium. When that didn’t work, he prescribed anti-depressants a few weeks later. None of it felt right to the businesswoman and mother of three, who loved her job and home life, and didn’t feel worried about them. 
   
   She bargained with the doctor “to buy herself time”, trying hypnosis and counselling and taking a step back from her work responsibilities. 
   
   One day, she arrived at the doctors with such low blood pressure that she was put straight in an ambulance and taken to hospital. 
   
   Specialists tested her for motor-neuron disease as well as mental health disorders. Finally, after four months, they diagnosed dysphagia — a rare condition in which patients lose the ability to swallow. 
   
   ‘I’D WAKE UP CHOKING ON MY OWN SALIVA’ 
   
   Sam’s life had become a living nightmare. She learnt to eat foods with a soft texture, like custard or yoghurt, and push them to the back of her throat while she waited for her swallowing mechanism to kick in. Half the time it would take too long, and she would cough up her food. 
   
   “I’d get three-quarters of the way through a tub of yoghurt and would have choked 20 times. My hand would be shaking so much I couldn’t keep going, I’d have to try again in a few hours.” 
   
   She stopped seeing friends, and wore loose clothing to hide the fact her weight had plummeted from 60 to 45 kilos, but her children could see something was very wrong. She often woke up in the night to find them standing over her tears, begging her not to die. 
   
   “It was very surreal, I felt like Alice in Wonderland, fallen down the rabbit-hole,” she said. “It felt like a dream. 
   
   “The whole day became a battle for survival. I thought, ‘I’m going to starve to death or choke to death, either way it’s coming for me.’ 
   
   “My life, my world had been devastated. I had nothing positive to say anymore. I was a hermit.” 
   
   Some friends told her she looked great, and that they wanted to be on her diet. Sam was horrified. “I was a 40-year-old mother weighing less than I did at 14.” 
   
   After nine months, doctors realised that a painful rash Sam had experienced in her left ear shortly before she lost the ability to swallow had been shingles. Left untreated, it had damaged four of her cranial nerves, triggering her dysphagia. 
   
   A dietitian put Sam on a liquid diet of 13 drinks a day, each high in calories, vitamins and minerals. “It would take me half an hour or 45 minutes to get one down. Sometimes it was like, as soon as you got the drink down, you’d look at the time and in half an hour you’ve got to do it again. I’d think ‘Why am I fighting through the day just to get up and do it again?’ 
   
   “I’d wake up at night choking on my own saliva.” 
   
   TOO DANGEROUS TO EAT ALONE 
   
   A year and a half after the problem began, it became clear Sam was suffering from malnutrition. Her hair was falling out, her skin was dry and her dry mouth had wreaked havoc on her teeth. She was anaemic and at as much risk of heart failure as a morbidly obese person. 
   
   Doctors inserted a feeding tube into her belly button for 18 months so she didn’t need to eat. They monitored her swallowing mechanism on film, and found it was as weak as that of a 90-year-old. 
   
   Having exhausted the help available in Australia, she and her husband looked online and found a specialist in the US, Professor Peter Belafsky, director of the University of California at Davis Voice and Swallowing Center. He has described the condition as “like being constantly waterboarded” as patients struggle to swallow their own saliva. 
   
   Four years on, Sam has learned to eat some foods that can be chewed with water until they become liquid, including mashed potato, cake and bread without grains. She can’t eat mincemeat or anything fibrous, and she cannot eat alone, because “it’s too dangerous.” 
   
   She works from her studio now, despite her previous love of interacting with customers, and her husband comes home every lunchtime to help her eat. Each meal is an exhausting ordeal of “non-stop chewing and swallowing and head positioning and throat clearing and keeping your airway clear and managing spillage and trying to keep a track of where the food in my mouth is,” Sam wrote in a heartfelt article on the Swallowing Disorder Foundation’s website. 
   
   The wife and mum says she’s realised who her real friends are. “People were using words like ‘phobia’ and ‘breakdown’,” she said. “I felt judged and betrayed by the people that should have known me better than that. 
   
   “There are definitely days when I don’t want to get out of bed ... But when I think about how far I have come, what I can manage to eat now compared to a year ago, two years ago, I am so happy.” 
   
   Sam has signed up for stem cell trials with Prof Balafsky next year. She hopes that may help her improve further, although she is unlikely to ever be able to swallow without thinking. 
   
   One thing is certain, she will never take for granted any simple thing her body can do. 
   
   emma.reynolds@news.com.au
target: – Samantha Anderson figured she had a work-packed weekend ahead when something happened at breakfast: The then-39-year-old couldn't swallow a single bite. "I went to swallow and I couldn’t," says the Australian jewelry maker. "It didn’t happen. I choked." The mother of three dismissed it until she couldn't eat anything that day and went to a doctor, who diagnosed stress and prescribed Valium, then anti-depressants, Australia's News Network reports. Then, after six months of weight loss and ravenous hunger, an answer: dysphagia—an unusual condition that prevents people from swallowing. "My days became solely about survival," she writes for the Swallowing Disorder Foundation. "I would set goals for myself—a whole tub of yogurt, a glass of water and two whole strawberries to be consumed by the end of the day. I rarely met them." Doctors told her a bout of shingles had damaged cranial nerves V, VII, IX and X, which triggered her swallowing issue. (Mosaic Science notes 7 of our dozen cranial nerves have a role in swallowing.) More than 18 months later, she had a feeding tube inserted; it provided a welcome relief from the 13 drinks she had been tasked with trying to choke down each day. The Brisbane resident and her husband then contacted US expert Peter Belafsky, whom she credits with understanding and helping her. "It’s like being constantly waterboarded," Belafsky says of dysphagia, which can render patients unable to swallow even their own saliva. Some 3.5 years after her fateful breakfast, Anderson's diet has expanded to include mashed potatoes, blueberries, oatmeal, and bread. "I am determined to eat," she writes, "even though it’s a long and arduous battle to get through each and every meal." (In another case, a teenager's bleeding eyes are ruining her life.)