On any given weekend for more than 40 years, you could find Stan Nicholas jamming away on his guitar, playing motorcycle rallies and festivals all over the Cleveland area. The Ford retiree and his Burnt River Band’s rock and blues had been drawing crowds since they were teens. Nicholas thought he’d be playing for life, but the music stopped for him one night in 2017.
The 66-year-old, who lived alone, was mashing potatoes for his dinner when he lost his balance, fell to the floor and couldn’t get back up.
“Every time I got halfway up, my knees would buckle, and I’d fall down again,” Nicholas remembered.
Nicholas was one of the nearly 795,000 people in the United States who have a stroke every year.
Stroke is the fifth most common killer in the US, but it’s also one of the leading causes of disability. For now, physical and occupational therapy is really the only option to help people like Nicholas, but it wasn’t enough to get back all his physical abilities.
Nicholas volunteered to become one of the first people in the world to try to regain his body’s function with the help of a little device planted in his brain and chest that the doctors hoped would stimulate them into action, even the parts of the brain that the stroke seemed to wipe out.
The results — detailed in a study published Monday in the journal Nature Medicine — have been hopeful for Nicholas, and if they could be replicated, they could show promise for thousands of people left disabled by a stroke.
Initial attempt at recovery
After that terrible night in 2017, Nicholas went through months of physical and occupational therapy, regaining some of his abilities but not all of them.
“I thought that I was going to be disabled for life, and I made it a priority to walk again,” he said.
Movement on his left side remained extremely difficult. An early scan showed that one of the main arteries in his brain had lost its blood supply, causing part of the right side of his brain to die and affecting the left side of his body.
He worked hard in therapy and started to walk some. He also regained some movement in his shoulder and elbow, but his hand didn’t want to move at all at first. He eventually got better at grasping objects, but moving his wrist up and down or even opening his hand seemed impossible.
About a year after his stroke and after months of PT, his doctors thought that was about all the progress he’d make.
“The expectation was poor,” said neurosurgeon Dr. Andre Machado of the Cleveland Clinic, who treated Nicholas. “Despite the early improvements, he was stable; he wasn’t improving anymore. So the likelihood that he would improve on his own was small.”
‘We had to innovate’
For years, Machado has been working with a technology called deep brain stimulation, in which doctors implant electrodes in certain areas of the brain that produce electrical impulses to regulate abnormal impulses. He’s used it successfully with people with Parkinson’s, but not with stroke.
In earlier trials, researchers had tried to use the technology to directly stimulate the parts of the brain where the stroke occurred. Initially, the idea showed promise, Machado said, but it didn’t pan out in a large clinical trial.
“We had to innovate,” Machado said.
Rather than stimulate the part of the brain where the stroke happened, he thought, maybe they should target a part of the cerebellum called the dentate nucleus.
The cerebellum helps with balance. It’s involved with walking and hand movements. The dentate nucleus collects information from the cerebellum and helps translate it to the cerebral cortex. With its high degree of connectivity, Machado thought it might be a good pathway to reflect the effects of the stimulation to other parts of the brain, including even the part killed off by the stroke.
Nicholas read about the work online and applied to be a part of Machado’s trial. After he went through extensive screening process and conversations with doctors and a psychiatrist, the neurosurgeon asked if he wanted to be one of the first in the world to undergo this experimental procedure. Nicholas was game.
‘I was ready to back out and quit’
Doctors didn’t operate right away. First, Nicholas needed more physical therapy with Machado’s team to see how much he would improve with that alone, to establish a new baseline. Then the day came for the surgery.
“I was terrified,” Nicholas said. ”I was ready to back out and quit.”
As with any surgery, the procedure was not without risk. There was a chance it would not work or could make his condition worse, and there was a small chance he could die.
“We didn’t know how much benefit it would give,” Machado said.
But after talking with his circle of friends, he became convinced that surgery was for the best.
Machado admires people who are willing to be a part of research.
“There is a degree of altruism of patients participating in a clinical trial. They do want to get better, of course, but they also want us to learn because they believe we’ll be able to help someone else,” he said.
Nicholas’ surgery involved placing an electrode, a wire, in the cerebellum, at the back of his brain. Doctors connected the wire to a small device under the skin of his chest.
When Nicholas woke up in recovery, he said, he felt relieved.
“I was worried about losing my memory and not recognizing people,” he said. “So I started just remembering everything I could do or who I was and what I was there for and what I did and remembering my family, making sure I was still intact, making sure I was still me.”
Surgical success
Nicholas’ first stop was back to physical therapy, and after a couple of months, doctors turned on the deep brain stimulation system. They adjusted it for several weeks as Nicholas did even more physical therapy.
After a few months, Nicholas started to realize that the device was helping. He couldn’t feel it in his head, but he started gaining movement in his left hand and arm. It started getting easier to do things around the house like dishes, yard work, cooking and tidying up. He also started to walk more easily.
“Without the surgery, I would be a lot more disabled than I am now,” Nicholas said, adding that he doesn’t think he’d be able to live on his own. He estimates that he’s 40% to 50% better than after physical therapy alone.
Machado said he was “pleasantly surprised” by all Nicholas could do. On a scale doctors commonly use to assess recovery from a stroke, where improvement is around six or eight points, he would rate the improvement during the trial around 15.
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“He can actually do things that are practical for his daily life again,” Machado said. “My whole team was very happy.”
As a part of the trial, doctors have taken the device out, and Nicholas is no longer doing PT. He hopes to one day play guitar again, but for now, his improvement he has experienced has been remarkable.
“It was the greatest feeling in the world. I was so happy, so confident,” Nicholas said. “I had hope.”
Machado believes that deep brain stimulation, in addition to physical therapy, could help improve movement for many more people even years after a stroke.
“This can transition from being hope, which it is today, to perhaps a treatment that will be a standard treatment in the future,” he said.
