Four years ago, Steve Hix of Huntersville was a practicing dentist, a runner averaging 35 miles per week, an outdoorsman who had hiked the perimeter of the Grand Canyon a year before. Then he was diagnosed with ALS.
Because of the progressive motor neuron disease, he mostly talks through an iPad now – loss of speech has hit hardest, he said – and moves around using a power wheelchair. But in the past several weeks, Hix has gotten some of his independence back with the Jaco robotic arm, an articulated limb that attaches to his wheelchair.
He can lift a fork to his mouth again, pick up a cup from a table, open doors, scratch his own head. He’s working on re-learning to shave with an electric razor, and he likes to tease the family dog.
Hix is one of the first ALS patients to use the arm, made by Canadian robotics company Kineva, and he’s had a steep learning curve.
Amber Ward, occupational therapy coordinator at Carolinas Medical Center, said the arm’s control system was so complicated that Hix was initially concerned it wouldn’t be useful.
Practice helps, though, and Hix can set “memory functions” to combine intricate steps into a smoother gesture.
Right now, Hix operates the arm with a joystick for his right hand and small switches at his left elbow and right thigh, but the arm’s controls can change to accommodate his changing muscular abilities.
“They’ll put it on his feet, so he can use the arm even when he has no use of his real arms,” his wife, Debbie Hix, said. “Anything that gives you just a little bit more independence is a good thing.”
The Hixes paid for the arm, which costs tens of thousands of dollars, themselves. Much of his treatment has been covered by Medicare or the Veterans Health Administration, so they decided they could afford for him to be the “guinea pig” for this technology.
According to the ALS Association, the disease is approximately twice as common in veterans than civilians. The VA covers ALS as a service-connected illness for anyone with at least 90 continuous days of military service.
“They don’t know why it’s service-connected,” Ward said.
In the early 1980s, Hix served as a dentist on an Indian reservation in Arizona with the Public Health Service, which fell under the Coast Guard at the time. He didn’t know he was covered by the VA until after his diagnosis.
Hix and his wife had lost a friend to ALS, so when he started getting sick four years ago, they caught the symptoms early.
Hix retired immediately, and for the next year, he and his wife traveled and “did things we’ve always wanted to do.” They visited Alaska, Niagara Falls, Mexico twice. They drove Route 66.
For decades, Hix had helped others through dentistry, and at first it seemed like ALS would take his opportunities for service away.
Now he and his wife see his participation in clinical trials and use of new technology like the arm as a form of service that can hopefully improve future patients’ experiences with ALS. They hope the VA might someday cover robotic arms as an ordinary part of ALS treatment.
“Somebody had to be the first person to get a wheelchair with all these modifications on it, and now it’s standard,” Debbie Hix said.
Four years after diagnosis, the Hixes are taking the disease one day at a time.
“There’s no cure for ALS, and so the only way you really fight it is making every day better,” Debbie Hix said.