A diving accident in April 2009 left Jason DiSanto a C4 quadriplegic, paralyzed from the neck down. The injury resulted in a lot of pain, and when that pain was coupled with the reality of being in a wheelchair for the rest of his life, DiSanto admits he was at first “overwhelmed with my situation.”
Yet only a few months after suffering his injury, DiSanto, an electrical engineer by degree and profession, was learning to operate his wheelchair by way of a sip-n-puff system when he spoke to a Georgia Tech student about a new technology that was in the early stages of clinical trials. The student told DiSanto that the system could allow him much more freedom than the tried-and-true sip-n-puff. It would remove the bulky apparatus and replace it with a small piece of titanium. That piece of titanium, in the form of a tiny barbell, would be pierced through DiSanto’s tongue.
DiSanto, forty, describes himself as “pretty tech savvy” and up on all “the latest gadgets.” His interest was piqued by the Tongue Drive System, and in short order he found himself involved in the testing of Maysam Ghovanloo’s creation. “I thought it was a neat idea on how to control the wheelchair, and so I got involved with the trials and have been involved ever since,” DiSanto says.
The idea that a tongue piercing can control a wheelchair is a little misleading. It’s not actually the barbell that does the work of the Tongue Drive System, it’s the tiny magnet embedded in the top portion of the barbell.
Ghovanloo, forty-one, an associate professor at the School of Electrical and Computer Engineering at Georgia Tech, has been working on the Tongue Drive System since 2005 and holds a patent on the technology. The magnet generates a small magnetic field that is picked up by sensors in a headset worn by the operator. When the operator moves his or her tongue, the sensors detect changes in the field, and that information is then turned into directional commands.
In some ways Ghovanloo’s younger brother, Yasser, can be looked at as the inspiration for the Tongue Drive System. The younger Ghovanloo was born with hearing deficiency, and that, says Maysam, inspired him to focus his professional energy on helping those with severe disabilities.
The idea for the system originated when Ghovanloo was ruminating on the works of noted neuroscientist Paul Bach-y-Rita, whose research on sensory substitution paved the way for equipment helping the blind to “see” by way of a camera and sensors attached to their tongues. “He would place an array of electrodes on the tongue of blind individuals,” Ghovanloo said, describing Bach-y-Rita’s work during a recent phone interview. “And by stimulating the tongue based on the image a camera would capture, the electrodes would help a blind person to recognize the position of an object.”
That conclusion helped Ghovanloo recognize that the tongue could be used not just as an input device for the human body, but as an output device as well. The concept of the Tongue Drive System was born.
* * *
Today, the sip-n-puff is the most popular assistive wheelchair-driving device. But according to Ghovanloo, that is “not because it’s high tech or because it’s very capable,” he says. “But mostly because it’s cheap and very reliable.”
In the simplest of terms, a sip-n-puff device is a straw that is placed in the mouth of an individual. The user then sips from or puffs into the straw to create signals that are then translated into commands, allowing the individual to control a computer or wheelchair. Explaining how the sip-n-puff works when operating a wheelchair, DiSanto said it “has four distinct commands that are arbitrarily given, as far as left and right, forward and backward.” Different levels of air pressure created by the driver are read by the chair as one of those commands.
“I was learning how to control my wheelchair and my environment with [the sip-n-puff system], and about a week later I tried the [Tongue Drive System] and I felt that the TDS was far superior in ease of learning,” DiSanto says. He was excited by the intuitive nature of the Tongue Drive System and enthusiastic about testing it because he only had a week of experience using any assistive technology. “At the time everything was new to me, so I didn’t really know heads or tails,” he says. “They were throwing tons of stuff at me, and I didn’t know anything about anything. So, as far as technology goes, I understood the technology, and I understood the concept and I was kind of excited about being involved with it.”
Ghovanloo echoed DiSanto’s reverie regarding the ease of learning for this fresh technology. In fact, the way he sees it, there really isn’t any training to be done — the actions required to use the system are already hardwired into the brain of the operator. “You don’t need to be trained to touch a particular tooth in your mouth with your tongue, you just decide to do it,” said Ghovanloo.
DiSanto says the Tongue Drive System operation is as easy as Ghovanloo makes it sound. It’s as simple as “moving your tongue to the right to go right or moving your tongue to the left to go left,” he says.
With the Tongue Drive System still some time away from hitting the market, DiSanto currently uses the sip-n-puff for his day-to-day activities. Knowing that the Tongue Drive System is out there, just not yet approved for use, can be frustrating, he says.
Ghovanloo has put his system through two clinical trials at the Rehabilitation Center of Chicago and the Shepherd Center in Atlanta, noting that, “With respect to sip-n-puff, the learning curve [of the TDS] was very fast. As a matter of fact, we saw a very significant improvement where the users were just learning how to use the Tongue Drive by the second session.” He later added: “I would say for a naive person with no prior experience [using the Tongue Drive System] it would take somewhere between 15 to 30 minutes to use [it] and from that time on you get better and better.”
Joy Bruce, manager of Shepherd Center’s Spinal Cord Injury Lab agreed with Ghovanloo’s assessment of his invention. “The patients that had more experience with [modern] technology were probably the fastest,” she said. “But everybody was pretty quick. Usually by the second or third session, everybody was showing signs of mastery.”
Another advantage is that it removes the bulky apparatus that sip-n-puff places in front of an individual. “If you have this big pipe going into your mouth, and becoming the symbol of someone’s disability, it might attract some unwanted attention and result in this person standing out as someone with a severe disability,” says Ghovanloo. But “you could be using [the Tongue Drive] and it will not be seen from outside, and it’s completely hidden.”
Another big draw of the Tongue Drive System is that it allows the user to operate a vast array of technology with relative ease. With the Tongue Drive System, users will no longer need a vast array of adaptive technology for day-to-day activities, system software built into the Tongue Drive will make the transition between tasks much easier.
As Ghovanloo said, “These days you can control almost everything — even cars can be controlled by computers. If we enable the user of the Tongue Drive to access a computer, automatically we have enabled this person to access [many] other devices. So, really the weakest link, the most challenging connection, is between the brain of the person and the computer. And the Tongue Drive System is doing this beautifully without being invasive, without requiring surgery, without requiring something very expensive. All that is required is receiving a tongue piercing.”
“In some of the trials throughout the last four or five years … I was able to use it for operating my computer, I was able to drive my wheelchair, manipulate my phone,” DiSanto says. “So, the big advantage over my current system is that for every device I want to control, I would need a separate sip-n-puff control and its own set of commands to control my wheelchair, my computer mouse, lighting, you name it. The advantages that the TDS has is that it’s all one device that you configure once and you can roll up to your computer, work on your computer, roll away to the living room and watch TV without having to have someone help me set up different devices and different adapters.”
“I personally feel that it’s going to be a big game changer as far as having the one device that can do multiple things,” says DiSanto. “You can drive your wheelchair, control your computer, control your TV, your lighting, possibly even open up doors, all from that one device.”
The version of the Tongue Drive used during clinical trials utilizes a headset during operation; a second version will remove the headset, and rely on a dental retainer.
Ghovanloo said the dental retainer system is not yet ready for clinical testing — there are some engineering issues yet to be resolved around wireless communication from inside the mouth. Once those problems have been resolved, Ghovanloo said he will begin the process of raising funds and recruiting clinicians and participants to run a new trial.
He is also working on another option that will appeal to those who are reluctant to commit to a tongue piercing, which Ghovanloo saw in some of the older individuals he approached while recruiting for his trials. Instead, they could implant the magnet inside the tongue via a small hypodermic needle — a process that would most likely be less painful, and leave the magnet completely invisible to the outside world.
Like the retainer system, the tongue implant is currently in a testing phase. For now, DiSanto said of those who are unwilling to receive a tongue piercing, “If they see the full picture of the capabilities, I think the benefits outweigh the concerns of having a tongue piercing.” He noted that he has had his own tongue piercing, for testing the Tongue Drive System, in place since 2012, and that it has not hurt him in any way during his business dealings while working for a major corporation.
Ghovanloo is unsure when the Tongue Drive System will actually hit the market, and said that the key for getting it into the mouths of possible users is finding someone who has marketing skills and an interest in the newest developments in assistive technology. “I’m not really a business person,” Ghovanloo pointed out. “What is required is someone with experience in both assistive technology and marketing, as well as a willingness to do some entrepreneurial activity.”
While the Tongue Drive System is crawling toward availability instead of sprinting, some of the initial test subjects remain hopeful that the product will hit the market soon. So hopeful, in fact, Ghovanloo says that some, including DiSanto, have left their tongue piercings in place so they can avoid that step in the process when the Tongue Drive System is finally ready for everyday use.
DiSanto says he has some good days and some bad days, and that he always tries to “remain positive, but sometimes that’s not realistic.” One thing that he is optimistic about is the fact that the Tongue Drive System will give him back some of the independence he lost with the 2009 diving accident.
DiSanto is firm in his belief that the Tongue Drive System is a viable option for those who currently require assistive technology. “It’s a great use of technology, and it’s highly customizable to what the end user may want, and as discreet as they want it to be, he says.”
“The real power of this product is that it’s multifaceted and that it gives people a level of independence that they never had before.”
* * *
Trent Reinsmith is a Baltimore based freelance writer. He has written for Vice.com, The Bark Magazine and Fight! Magazine, among others. Follow him @TrentReinsmith.