Paralyzed By Polio, This British Tea Broker Changed the Course Of Medical History Forever
In December 1958, on a vacation with his wife in Kenya, a 28-year-old British tea broker named Robin Cavendish became suddenly ill. Neither he nor his wife Diana knew it at the time, but Robin's illness would change the course of medical history forever.
Robin was rushed to a nearby hospital in Kenya where the medical staff delivered the crushing news: Robin had contracted polio, and the paralysis creeping up his body was almost certainly permanent. The doctors placed Robin on a ventilator through a tracheotomy in his neck, as the paralysis from his polio infection had rendered him unable to breathe on his own – and going off the average life expectancy at the time, they gave him only three months to live. Robin and Diana (who was pregnant at the time with their first child, Jonathan) flew back to England so he could be admitted to a hospital. They mentally prepared to wait out Robin's final days.
But Robin did something unexpected when he returned to the UK – just one of many things that would astonish doctors over the next several years: He survived. Diana gave birth to Jonathan in February 1959 and continued to visit Robin regularly in the hospital with the baby. Despite doctors warning that he would soon succumb to his illness, Robin kept living.
After a year in the hospital, Diana suggested something radical: She wanted Robin to leave the hospital and live at home in South Oxfordshire for as long as he possibly could, with her as his nurse. At the time, this suggestion was unheard of. People like Robin who depended on machinery to keep them breathing had only ever lived inside hospital walls, as the prevailing belief was that the machinery needed to keep them alive was too complicated for laypeople to operate. But Diana and Robin were up for the challenges – and the risks. Because his ventilator ran on electricity, if the house were to unexpectedly lose power, Diana would either need to restore power quickly or hand-pump air into his lungs to keep him alive.
Robin's wheelchair was not only the first of its kind; it became the model for the respiratory wheelchairs that people still use today.
In an interview as an adult, Jonathan Cavendish reflected on his parents' decision to live outside the hospital on a ventilator: "My father's mantra was quality of life," he explained. "He could have stayed in the hospital, but he didn't think that was as good of a life as he could manage. He would rather be two minutes away from death and living a full life."
After a few years of living at home, however, Robin became tired of being confined to his bed. He longed to sit outside, to visit friends, to travel – but had no way of doing so without his ventilator. So together with his friend Teddy Hall, a professor and engineer at Oxford University, the two collaborated in 1962 to create an entirely new invention: a battery-operated wheelchair prototype with a ventilator built in. With this, Robin could now venture outside the house – and soon the Cavendish family became famous for taking vacations. It was something that, by all accounts, had never been done before by someone who was ventilator-dependent. Robin and Hall also designed a van so that the wheelchair could be plugged in and powered during travel. Jonathan Cavendish later recalled a particular family vacation that nearly ended in disaster when the van broke down outside of Barcelona, Spain:
"My poor old uncle [plugged] my father's chair into the wrong socket," Cavendish later recalled, causing the electricity to short. "There was fire and smoke, and both the van and the chair ground to a halt." Johnathan, who was eight or nine at the time, his mother, and his uncle took turns hand-pumping Robin's ventilator by the roadside for the next thirty-six hours, waiting for Professor Hall to arrive in town and repair the van. Rather than being panicked, the Cavendishes managed to turn the vigil into a party. Townspeople came to greet them, bringing food and music, and a local priest even stopped by to give his blessing.
Robin had become a pioneer, showing the world that a person with severe disabilities could still have mobility, access, and a fuller quality of life than anyone had imagined. His mission, along with Hall's, then became gifting this independence to others like himself. Robin and Hall raised money – first from the Ernest Kleinwort Charitable Trust, and then from the British Department of Health – to fund more ventilator chairs, which were then manufactured by Hall's company, Littlemore Scientific Engineering, and given to fellow patients who wanted to live full lives at home. Robin and Hall used themselves as guinea pigs, testing out different models of the chairs and collaborating with scientists to create other devices for those with disabilities. One invention, called the Possum, allowed paraplegics to control things like the telephone and television set with just a nod of the head. Robin's wheelchair was not only the first of its kind; it became the model for the respiratory wheelchairs that people still use today.
Robin went on to enjoy a long and happy life with his family at their house in South Oxfordshire, surrounded by friends who would later attest to his "down-to-earth" personality, his sense of humor, and his "irresistible" charm. When he died peacefully at his home in 1994 at age 64, he was considered the world's oldest-living person who used a ventilator outside the hospital – breaking yet another barrier for what medical science thought was possible.
Kelly, a case manager for an insurance company, spent years battling both migraines and Crohn's, a disease in which the immune system attacks the intestines.
For many people, like Kelly, a stronger electric boost to the vagus nerve could be life-changing.
After she had her large intestine removed, her body couldn't absorb migraine medication. Last year, about twice a month, she endured migraines so bad she couldn't function. "It would go up to a ten, and I would rock, wait it out," she said. The pain might last for three days.
Then her neurologist showed her a new device, gammaCore, that tames migraines by stimulating a nerve—not medication. "I don't have to put a chemical in my body," she said. "I was thrilled."
At first, Kelly used the device at the onset of a migraine, applying electricity to her pulse at the front of her neck for six minutes. The pain peaked at about half the usual intensity--low enough, she said, that she could go to work. Four months ago, she began using the device for two minutes each night as prevention, and she hasn't had a serious migraine since.
The Department of Defense and Veterans Administration now offer gammaCore to patients, but it hasn't yet been approved by Medicare, Medicaid, or most insurers. A month of therapy costs $600 before insurance or a generous financial assistance program kicks in.
A patient uses gammaCore, a non invasive vagal nerve stimulator device that was FDA approved in November 2018, to treat her migraine.
(Photo captured from a patient video at gammacore.com)
If the poet Walt Whitman wrote "I Sing The Body Electric" today, he might get specific and point to the vagus nerve, a bundle of fibers that run from the brainstem down the neck to the heart and gut. Singing stimulates it—and for many people, like Kelly, a stronger electric boost to the nerve could be life-changing.
The mind-body connection isn't just an idea — the vagus nerve literally carries signals from the mind to the body and back. It may explain the link between childhood trauma and illnesses such as chronic pain and headaches in adults. "How is it possible that a psychological event causes pain years later?" asked Peter Staats, co-founder of electroCore, which has won approval for its new device from the Food and Drug Administration (FDA) for both migraine and cluster headaches. "There has to be a mind-body interface, and that is the vagus nerve," he said.
Scientists knew that this nerve controlled your heart rate and blood pressure, but in the past decade it has been linked to both pain and the immune system.
"Everything is gated through the vagus -- problems with the gut, the heart, and the lungs," said Chris Wilson, a researcher at Loma Linda University, in California. Wilson is studying how vagus nerve stimulation (VNS) could help pre-term babies who develop lung infections. "Nearly every one of our chronic diseases, including cancer, Alzheimer's, Parkinson's, chronic arthritis and rheumatoid arthritis, and depression and chronic pain…could benefit from an appropriate stimulator," he said.
It's unfortunate that Kelly got her device only after her large intestine was gone. SetPoint Medical, a privately held California company founded to develop electronic treatments for chronic autoimmune diseases, has announced early positive results with VNS for both Crohn's and rheumatoid arthritis.
As SetPoint's chief medical officer, David Chernoff, put it, "We're hacking into the nervous system to activate a system that is already there," an approach that, he said, could work "on many diseases that are pain- and inflammation-based." Inflammation plays a role in much modern illness, including depression and obesity. The FDA already has approved VNS for both, using surgically implanted devices similar to pacemakers. (GammaCore is external.)
The history of VNS implants goes back to 1997, when the FDA approved one for treating epilepsy and researchers noticed that it rapidly lifted depression in epileptic patients. By 2005, the agency had approved an implant for treatment-resistant depression. (Insurance companies declined to reimburse the approach and it didn't take off, but that might change: in February, the Center for Medicare and Medicaid Services asked for more data to evaluate coverage.) In 2015, the FDA approved an implant in the abdomen to regulate appetite signals and help obese people lose weight.
The link to inflammation had emerged a decade earlier, when researchers at the Feinstein Institute for Medical Research, in Manhasset, New York, demonstrated that stimulating the nerve with electricity in rats suppressed the production of cytokines, a signaling protein important in the immune system. The researchers developed a concept of a hard-wired pathway, through the vagus nerve, between the immune and nervous system. That pathway, they argued, regulates inflammation. While other researchers argue that VNS is helpful by other routes, there is clear evidence that, one way or another, it does affect immunity.
At the same time, investors are seeking alternatives to drugs.
The Feinstein rat research concluded that it took only a minute a day of stimulation and tiny amounts of energy to activate an anti-inflammatory reflex. This means you can use devices "the size of a coffee bean," said Chernoff, much less clunky than current pacemakers—and advances in electronic technology are making them possible.
At the same time, investors are seeking alternatives to drugs. "There's been a push back on drug pricing," noted Lisa Rhoads, a managing director at Easton Capital Investment Group, in New York, which supported electroCore, "and so many unintended consequences."
In 2016, the U.S. National Institutes of Health began pumping money into relevant research, in a program called "Stimulating Peripheral Activity to Relieve Conditions," which focuses on "understanding peripheral nerves — nerves that connect the brain and spinal cord to the rest of the body — and how their electrical signals control internal organ function."
GlaxoSmithKline formed Galvani Bioelectronics with Google to study miniature implants. It had already invested in Action Potential Venture Capital, in Cambridge, Massachusetts, which holds SetPoint and seven other companies "that are all targeting a nerve to treat a chronic disease," noted partner Imran Eba. "I see a future in which bioelectronics medicine is competing directly with drugs," he said.
Treating the body with electricity could bring more ease and lower costs. Many people with serious auto-immune disease, for example, have to inject themselves with drugs that cost $60,000 a year. SetPoint's implant would cost less and only need charging once a week, using a charger worn around the neck, Chernoff said. The company receives notices remotely and can monitor compliance.
Implants also allow the treatment to target a nerve precisely, which could be important with Parkinson's, chronic pain, and depression, observed James Cavuoto, editor and publisher of Neurotech Reports. They may also allow for more fine-turning. "In general, the industry is looking for signals, biomarkers that indicate when is the right time to turn on and turn off the stimulation. It could dramatically increase the effectiveness of the therapy and conserve battery life," he said.
Eventually, external devices could receive data from biomarkers as well. "It could be something you wear on your wrist," Cavuoto noted. Bluetooth-enabled devices could communicate with phones or laptops for data capture. External devices don't require surgery and put the patient in charge. "In the future you'll see more customer specification: Give the patient a tablet or phone app that lets them track and modify their parameters, within a range. With digital devices we have an enormous capability to customize therapies and collect data and get feedback that can be fed back to the clinician," Cavuoto said.
Slow deep breathing, the traditional mind-body intervention, is "like watching Little League. What we're doing is Major League."
It's even possible to stimulate the vagus through the ear, where one branch of the bundle of fibers begins. In a fetus, the tissue that becomes the ear is also part of the vagus nerve, and that one bit remains. "It's the same point as the acupuncture point," explained Mark George, a psychiatrist and pioneer researcher in depression at Medical University of South Carolina in Charleston. "Acupuncture figured out years ago by trial and error what we're just learning about now."
Slow deep breathing, the traditional mind-body intervention, also affects the vagus nerve in positive ways, but gently. "That's like watching Little League," Staats, the co-founder of electroCore, said. "What we're doing is Major League."
In ten years, researcher Wilson suggested, you could be wearing "a little ear cuff" that monitors your basic autonomic tone, a heart-attack risk measure governed in part by the vagus nerve. If your tone looked iffy, the stimulator would intervene, he said, "and improve your mood, cognition, and health."
In the meantime, we can take some long slow breaths, read Whitman, and sing.
“Siri, Read My Mind”: A New Device Lets Users Think Commands
Sometime in the near future, we won't need to type on a smartphone or computer to silently communicate our thoughts to others.
"We're moving as fast as possible to get the technology right, to get the ethics right, to get everything right."
In fact, the devices themselves will quietly understand our intentions and express them to other people. We won't even need to move our mouths.
That "sometime in the near future" is now.
At the recent TED Conference, MIT student and TED Fellow Arnav Kapur was onstage with a colleague doing the first live public demo of his new technology. He was showing how you can communicate with a computer using signals from your brain. The usually cool, erudite audience seemed a little uncomfortable.
"If you look at the history of computing, we've always treated computers as external devices that compute and act on our behalf," Kapur said. "What I want to do is I want to weave computing, AI and Internet as part of us."
His colleague started up a device called AlterEgo. Thin like a sticker, AlterEgo picks up signals in the mouth cavity. It recognizes the intended speech and processes it through the built-in AI. The device then gives feedback to the user directly through bone conduction: It vibrates your inner ear drum and gives you a response meshing with your normal hearing.
Onstage, the assistant quietly thought of a question: "What is the weather in Vancouver?" Seconds later, AlterEgo told him in his ear. "It's 50 degrees and rainy here in Vancouver," the assistant announced.
AlterEgo essentially gives you a built-in Siri.
"We don't have a deadline [to go to market], but we're moving as fast as possible to get the technology right, to get the ethics right, to get everything right," Kapur told me after the talk. "We're developing it both as a general purpose computer interface and [in specific instances] like on the clinical side or even in people's homes."
Nearly-telepathic communication actually makes sense now. About ten years ago, the Apple iPhone replaced the ubiquitous cell phone keyboard with a blank touchscreen. A few years later, Google Glass put computer screens into a simple lens. More recently, Amazon Alexa and Microsoft Cortana have dropped the screen and gone straight for voice control. Now those voices are getting closer to our minds and may even become indistinguishable in the future.
"We knew the voice market was growing, like with getting map locations, and audio is the next frontier of user interfaces," says Dr. Rupal Patel, Founder and CEO of VocalID. The startup literally gives voices to the voiceless, particularly people unable to speak because of illness or other circumstances.
"We start with [our database of] human voices, then train our deep learning technology to learn the pattern of speech… We mix voices together from our voice bank, so it's not just Damon's voice, but three or five voices. They are different enough to blend it into a voice that does not exist today – kind of like a face morph."
The VocalID customer then has a voice as unique as he or she is, mixed together like a Sauvignon blend. It is a surrogate voice for those of us who cannot speak, just as much as AlterEgo is a surrogate companion for our brains.
"I'm very skeptical keyboards or voice-based communication will be replaced any time soon."
Voice equality will become increasingly important as Siri, Alexa and voice-based interfaces become the dominant communication method.
It may feel odd to view your voice as a privilege, but as the world becomes more voice-activated, there will be a wider gap between the speakers and the voiceless. Picture going shopping without access to the Internet or trying to eat healthily when your neighborhood is a food desert. And suffering from vocal difficulties is more common than you might think. In fact, according to government statistics, around 7.5 million people in the U.S. have trouble using their voices.
While voice communication appears to be here to stay, at least for now, a more radical shift to mind-controlled communication is not necessarily inevitable. Tech futurist Wagner James Au, for one, is dubious.
"I'm very skeptical keyboards or voice-based communication will be replaced any time soon. Generation Z has grown up with smartphones and games like Fortnite, so I don't see them quickly switching to a new form factor. It's still unclear if even head-mounted AR/VR displays will see mass adoption, and mind-reading devices are a far greater physical imposition on the user."
How adopters use the newest brain impulse-reading, voice-altering technology is a much more complicated discussion. This spring, a video showed U.S. House Speaker Nancy Pelosi stammering and slurring her words at a press conference. The problem is that it didn't really happen: the video was manufactured and heavily altered from the original source material.
So-called deepfake videos use computer algorithms to capture the visual and vocal cues of an individual, and then the creator can manipulate it to say whatever it wants. Deepfakes have already created false narratives in the political and media systems – and these are only videos. Newer tech is making the barrier between tech and our brains, if not our entire identity, even thinner.
"Last year," says Patel of VocalID, "we did penetration testing with our voices on banks that use voice control – and our generation 4 system is even tricky for you and me to identify the difference (between real and fake). As a forward-thinking company, we want to prevent risk early on by watermarking voices, creating a detector of false voices, and so on." She adds, "The line will become more blurred over time."
Onstage at TED, Kapur reassured the audience about who would be in the driver's seat. "This is why we designed the system to deliberately record from the peripheral nervous system, which is why the control in all situations resides with the user."
And, like many creators, he quickly shifted back to the possibilities. "What could the implications of something like this be? Imagine perfectly memorizing things, where you perfectly record information that you silently speak, and then hear them later when you want to, internally searching for information, crunching numbers at speeds computers do, silently texting other people."
"The potential," he concluded, "could be far-reaching."