WILLOW SPRINGS, Ill. (WGN) — There has been an extraordinary step forward in the treatment of spinal cord injuries.
For the patients who come through the door of the Next Steps clinic in southwest suburban Willow Springs, it takes tremendous effort. But it’s worth it.
“We are really living out our mission here at Next Steps, which was to provide access to technology at a community level,” physical therapist and clinic director Mary Jones said.
Bari Rubenstein has been living with quadriplegia for 14 years – the result of an infection and subsequent hematoma that damaged the nerves in her spine.
“I never thought in my lifetime I would get this opportunity,” she said.
It’s access to a device called ARC-EX that’s giving Rubenstein some hope.
“It is able to bridge an electrical gap and cover that injury so new pathways within the spinal cord can create movement,” Jones said.
Electrical nerve stimulation is not new, but the ARC-EX is non-invasive – it delivers pulses from electrodes placed on the skin that amplify weakened signals from the brain. The stimulation helps restore muscle activation below the site of injury, which is often blocked.
An electrode is placed above Rubenstein’s injury and another is placed below.
“So the stimulation bridges that area of the injury,” Jones said.
Once the leds and electrodes are all connected, Jones starts the stimulation and gradually ramps it up. As the stimulation activates the muscles, clinic director Jones reinforces the movement.
“We pair that with retraining, learning how to re-move for those persons with spinal cord injury, and that device helps make that connection that was once lost with spinal cord injury,” she said.
“I have better breath support, which is huge because a lot of times people can’t hear me, so I’m trying to amplify my voice more,” Rubenstein said.
“Even people with chronic injuries are seeing gains with this,” Jones said. “People 14 years out, you think, ‘At 14 years what is out there for me?’ This device could be that device.”
At Next Steps, patient Trevor Hayden takes steps without the device. It’s a significant struggle.
“It’s so choppy because it’s like three separate motions,” he said.
The 33-year-old, paralyzed in a truck accident eight years ago, travels nearly three hours twice a week so he can access the new stimulation system.
“The pulse that it delivers is almost you can feel it kind of spreading, and it’s not just directed right where the pad placement is,” he said. “This feeling of kind of waking things up in a way.”
The steps with the device are more fluid and take less effort.
“(It is) much easier. It just feels like everything is kind of pulled together,” Hayden said.
The care provided at Next Steps is a labor of love born from loss. Jon O’Connor was 30-years-old when he hit his head after jumping off a dock.
“He got paralyzed C4-C5. Very high level. All he had was use of his right bicep,” his father John O’Connor said.
But the injury did not deter his tenacity. In the years following his accident, Jon worked tirelessly to build a non-profit clinic that offered fellow patients the most promising treatments to improve movement and strength.
“Even though some things wouldn’t benefit himself, he saw the value that it would have for others and fought for that,” his sister Kelly Heneghan said.
Now his family continues the fight. Jon passed away in 2013 – 12 years after his injury – due to the secondary effects of his paralysis.
“We really want to be able to give our patients the most technologically advanced equipment, and at that time and still to this day, a lot of those things are reserved for clinical trials,” said Heneghan.
Not at Next Steps, where technology like the Onward device is up and running for all those who may benefit.
“To me it feels like my muscles are waking up,” Rubenstein said. “For a long time it was nothing.”
“I wish Jon could be here to see this. This is exactly what he would have fought for, and the fact that we have it now is really exciting for our patients,” Heneghan said.
“I get emotional about it because there are brilliant people, brilliant scientists out there coming up with these type of devices, and to see it come and change peoples’ lives and being part of that is a really big gift,” Jones said.
An at-home unit is in the works. The device makers hope to have that available in 2026.
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