Jerod Nieder has been paralyzed from the chest down for the past eight years, but lying on his back as researchers call out commands — “right knee up” — Nieder is able to slowly move his knee toward his chest.
Nieder does not have sensation in his lower body, but he is learning to use an experimental spinal cord treatment to control his body in a new way. The treatment involves a small device implanted over the lower region of the spinal cord. In a video of Nieder learning to use the device, which he had surgically implanted in May, he is able to wiggle his toes, flex his ankles, and, after several unsuccessful attempts, bring his knee up.
“When you first start out, you kind of sit there and stare at your legs a lot and not a lot happens,” Nieder told the Journal-World. “But you get just a little flicker, you’ll see your toe wiggle a little bit or something, and so whatever you were thinking about, you keep trying that movement.”
Nieder is participating in a research study on spinal cord epidural stimulation, which uses a device to send electrical signals along the spinal cord that give those with paralysis a way to control their muscles. The Epidural Stimulation Program is part of the University of Louisville’s Kentucky Spinal Cord Injury Research Center and led by Dr. Susan Harkema, associate director of the center and professor of neurosurgery at the university. The research is sponsored in part by the Christopher & Dana Reeve Foundation.
Nieder, who grew up in Lawrence, now splits time between Lawrence and Louisville to participate in the study. A good deal of his time involves configuring settings and learning to use the device, but he says more important than being able to control some movements, it has improved his health.
In 2011, during a family vacation in Mexico, Nieder broke his neck after diving into the ocean and striking his head on a cluster of boulders, as the Journal-World reported at the time. Nieder said that in addition to being paralyzed from the chest down, the spinal cord injury causes muscle spasms and prevents his body from properly regulating his blood pressure and other functions.
At the time of his injury, Nieder was 29 and helped run the family’s business, Jayhawk Guttering and Nieder Contracting. Nieder and his father, Mike Nieder, both said that the family has received a lot of emotional and fundraising support from the Lawrence community following the injury. Nieder underwent rehabilitation at Craig Hospital in Denver following his injury, but Mike Nieder said it was hard for his son to accept some of the advice given to him.
“They want you to try and find happiness with your new normal,” Mike Nieder said. “He had a hard time with that and was not willing to go that route. He wanted to keep (doing) recovery therapy, trying to recover.”
Mike Nieder said that included spending hours on a special stationary bicycle that electronically stimulated his son’s body to pedal, which was meant to help prevent atrophy in his muscles and ligaments. Mike Nieder said even though there was no cure for paralysis, his son was hopeful about new scientific advancements and wanted his body to be ready to accept them.
“To keep his body parts functioning the best you can, that was Jerod’s goal, basically,” Mike Nieder said. “His goal was to be ready to accept the new technology. He had kind of an advantage on a lot of patients that came in because he constantly worked out, constantly worked on all his body: his legs, his hands, his arms.”
Nieder learned about the epidural stimulation research not long after his accident, and since finding out about it had pursued a chance to take part in a study.
The first study associated with the epidural stimulation program occurred in 2009, according to a timeline on the program’s website. The research began with the goal of restoring motor function, but later led to other benefits, according to a news release from the program. Researchers and participants soon noticed that epidural stimulation led to improvements in cardiovascular and autonomic systems as well, which Harkema said has improved patients’ quality of life.
“Many people don’t realize that walking in many cases is not really the aspect that makes their daily lives most difficult because they have cardiovascular dysfunction and problems with respiratory, bowel, bladder, and sexual function,” Harkema said in the release. “All of those things are disrupted so every day is incredibly difficult for people with spinal cord injury.”
Nieder said the biggest benefits so far indeed have to do with his overall health and what the increased circulation has meant for his body. For instance, he said he’s gone from suffering regular urinary tract infections to only having one since receiving the implant. Wounds on his legs and feet that used to take more than a year to heal are healing faster. But most importantly, he said he’s been able to stabilize his blood pressure.
Drops in his blood pressure, which Nieder said happen when he’s eating, drinking or trying to project his voice, made going out with friends difficult. He said to stabilize his blood pressure he often had to recline his wheelchair. With the stimulator helping to keep his blood pressure stable, he said he feels more normal when he’s out to dinner with friends.
“I can sit up perfectly like everyone else does, which is huge for me because I feel like I fit in more when my chair is upright and I’m at the same angle as everyone else,” Nieder said. “And I can project my voice, I can have dinner and drinks, not getting crazy or anything. I can do what normal people do without my blood pressure tanking.”
The process is not like flipping a switch. The stimulator is controlled by a remote and has 16 electrodes that must be configured for certain movements or outcomes, Nieder said. He will be working with those at the study for approximately two years, and currently practices using the device six hours every day to control specific movements. Nieder said often the commands one would normally send the body feel opposite and reversed. For instance, he said he might have to think about lowering his left leg in order to raise his right leg.
Even when he figures out how to trigger a certain movement or outcome, Nieder said it doesn’t always last. For instance, he said they found a setting that helped him control his muscles spasms, which can make him drop whatever he’s holding, but that the setting stopped working with time.
“This research is not perfect and things come and go,” Nieder said. “The spasm reduction would be huge, but we’ve got to find another (setting). We’re still searching to find one that sticks.”
Come January, Nieder will move on to a portion of the training that will focus on learning to stand. Nieder said he is the 21st person to have the device implanted and though two people have been able to use the device to take some steps with assistance, such as a walker, he didn’t emphasize that possibility.
Even though he doesn’t know what the ultimate result of the implant will be, Nieder said he was grateful that he was able to take part in the study and wished everyone with paralysis had the opportunity.
“The first time I was able to activate my core or the first time I moved my legs, it was such a surreal (feeling),” Nieder said. “I really feel like I’m an astronaut, like I’m on the cutting edge of this science and we don’t really know what’s going to happen with everything.”
Source: Rochelle Valverde, Lawrence Journal-World