Brain-Damaged Emma Finds a Voice With Grassroots IPad App
Emma Edwards, 26, has no control over the fine motor muscles in her hands, which stay tightly and awkwardly clenched. She also can’t talk, walk or move her arms more than 20 inches at a time.
Edwards, who suffered a traumatic brain injury in 2001, can write e-mails, though, and she’s revisiting a favorite pastime, sketching, for the first time in a decade, thanks to her iPad and software applications that can cost as little as $7.
That’s a switch from the $15,000 communication device she had tried, a 9-pound machine approved by her insurer that tracks eye movement on a special grid corresponding to the alphabet. That device kept her tied to those in the room around her. The iPad, along with several other consumer-driven apps, has reopened the world to her.
“You see the joy on her face” when she’s using it, said her mother, Jill. “It represents freedom for her.”
Edwards, of Rochester, Minnesota, is part of a grassroots movement sweeping the $1 billion-a-year assistive-technology market. While Pittsburgh-based DynaVox Inc. (DVOX), closely held Tobii Technology from Stockholm and Prentke Romich GmbH of Kassel, Germany, dominate the field, the advent of Apple Inc. (AAPL)’s iPad and an open operating system that enables anyone to create software is changing the way thousands of disabled people communicate and take care of their daily lives.
About 125,000 adults, including stroke patients and those with traumatic brain injuries, may benefit from assistive communication devices each year, according to Thomas Gunderson, an industry analyst with Piper Jaffray & Co. in Minneapolis.
RJ Cooper & Associates, a closely held maker of software, accessories and applications for disabled people, has seen 85 percent of its business switch to the iPad in the past two years since Cupertino, California-based Apple introduced the tablet, according to R.J. Cooper, the Laguna Niguel, California-based company’s founder.
“The consumers took the lead this time,” Cooper said in a telephone interview. “Parents are hiring people to create apps because they’re sick and tired of what’s available: 20-pound devices they can’t take to the playground.”
IPads and similar devices “have moved from the mainstream to special needs,” he said. “And what a crossover it’s been. The hubbub isn’t even nearly over. People are still jumping on the train.”
Struggling to Communicate
Emma Edwards was 16 in 2001 when she crashed her car in a rainstorm, just two months after getting her driver’s license. The accident left her with permanent damage in the portion of her brain that controls voluntary movement. Her brain sends constant messages telling her muscles to clench, creating spasticity that contorts her hands and feet, bends her joints and reduces her range of motion.
“When she first had her accident, we couldn’t communicate at all,” Jill Edwards said in an interview. “I knew she understood, but nobody had figured out a way to break through.”
The Edwards’ insurer approved the eye-gaze technology for Emma, but the machine needed to be recalibrated when it was moved, was bulky and couldn’t be used outside, Jill Edwards said. That limited its usefulness.
Emma underwent a series of operations and last year sank into major depression, according to Tammy Vos-Draper, her occupational therapist at the Mayo Clinic in Rochester. An iPad from her mother and a $6.99 art application Vos-Draper found on iTunes helped pull her out of it, along with programs like e- mail and Facebook, the therapist said.
Simple and Inexpensive
“Something inexpensive and simple that’s accessible to everyone -- you don’t need a prescription, you don’t need to spend thousands of dollars -- has dramatically changed her life,” Vos-Draper said in an interview.
Emma has a special stylus that a caretaker slides between her fingers that she uses to laboriously type e-mail. She had moved out of her parents’ home several years ago and into a group house near the Mayo Clinic, where she receives occupational therapy.
While typos and repeat letters caused by holding down a key too long are common, the direct connection is invaluable, said her mother.
“It’s so fun to get an e-mail from her,” Jill Edwards said. “There will be mistakes because of the physical struggles that she has, like two Ms in a row if she holds down the key for too long. But for her to be able to communicate directly with me, it’s rare. There is just something really personal about it.”
Talk to Me
While Emma can’t talk, she can converse through an iPad application called Talk to Me that lets users type out or touch words on a screen, then converts them into a physical voice.
The iPad, Emma said using Talk to Me, “has given me the ability to not only communicate more independently but to also share my artistic abilities once again.”
Emma’s range was limited to a tiny portion of the 7-inch by 9-inch screen when she started using the program four months ago, Vos-Draper said. The woman’s determination, along with hours of practice, now has her filling the entire space.
Emma’s drive to create art has reaped other benefits, Vos- Draper said. The movements work like occupational therapy, and now she can brush her teeth, feed herself and smooth down the front of her hair.
“One of the things that was most dear to her was her ability to draw,” Jill Edwards said. “From the very beginning, with every surgery, she would hope she would be able to use her hands to draw again,” a pastime that had won her accolades in high school and community awards.
Emma has done a dozen drawings, with names including “Starry Night” and “Blue Elephant.” While they aren’t the realistic renditions that Emma previously drew, “it’s huge for her,” her mother said.
Emma’s iPad is fastened to her wheelchair with photography and automotive equipment, which was built by Jeff Boyer of Houston. Boyer’s mother, Jeanette, suffered a stroke that left her unable to speak clearly. He set his mother up with Skype so he could communicate with her visually from her home in Rochester. After two broken iPads, he realized she needed a sturdier way to attach the device to her wheelchair.
He started building the contraption himself and, with the encouragement of the Mayo Clinic staff, selling copies online. He has also crafted funny vignettes for Jeanette’s speech program to read -- such as “My name is Jeanette. I really like driving my wheelchair around at speed level” -- as well as shopping lists that enable her to click on favorite foods and an address book that includes her family.
“We’re making this stuff up as we go along,” Boyer said in an interview. Jeanette, meanwhile, can now shop by herself.
Apple builds features like the ability to zoom into a certain area or to enlarge text into all its products to improve accessibility, said Trudy Muller, a company spokeswoman. “Assistive technologies are deeply important to us,” she said.
About half of new patients arriving at the University of Central Florida’s Communication Disorders Clinic bring some type of home-used technology, said Janet Whiteside, chairman of the board of clinical educators.
Using the Technology
It’s not just e-mail, she said. Patients have global positioning systems, one-touch planners that show pictures of their next activity and alarms that remind them verbally and in writing of appointments and what medicines to take.
Gunderson, the Piper Jaffray analyst in Minneapolis, said the popularity of the devices is increasing the market for technology that meets the special needs of people. It’s also bringing down the size and the cost of the devices, he said.
“The latest product from DynaVox is more iPad-like, but has more beef behind it that’s directed at people who have coordination problems,” he said.
Emma is seeing success of her own.
“People on the outside look at Emma and think what a shame,” Jill Edwards said. “But I tell her, if she was able to walk and talk but I had lost her mentally, if she wasn’t able to think, I would have really lost her. Her personality is the same. On the inside, she is still the same Emma. We can communicate. We still have her. For that we are very blessed.”
To contact the editor responsible for this story: Reg Gale at firstname.lastname@example.org