Traveling Across the Globe for Rehabilitation
Nils Grimley, 37, had just spent an hour slowly pushing a walker around the Beyond Therapy® gym at Shepherd Center in June of 2012 under the supervision of two therapists and was sitting in his wheelchair beaming like a newly risen sun.
“They killed me,” he said. “I loved it.”
Nils’ father, John, was standing nearby and allowed himself a smile of his own. “Coming here has been a game-changer for us,” he said.
So much so, in fact, that the Grimleys returned to Shepherd Center to continue Nils’ rehabilitation in May 2013, nearly four years after he was injured in Perth, Australia. Nils’ car was struck by a car going 60 miles an hour when it ran a red light.
His accident horrified his parents – and not just because he sustained a severe brain injury. Their older son, Emrys, was injured in a similar accident in 1992, and he died before they were able to reach him.
The Grimleys immediately closed their small hotel in New Norfolk, Tasmania, after Nils’ accident and flew 1,860 miles to Perth on Australia’s west coast. They devoted the next two and a half years to overseeing their son’s recovery.
Nils spent the first 10 days after his injury in a coma with what John says was among the worst 5 percent of brain injuries. “There were long periods when there was no recognition at all – nothing,” he recalled. “But we kept his body moving and exercising him even through the coma. We talked to him and put on television shows like ‘Planet Earth’ to give him stimulation.”
Eventually, Nils moved a finger, then pointed at letters on a board and finally at letters on a keyboard. But the Grimleys’ unconventional efforts were often discouraged by the very people who were supposed to help, John says. A physiotherapist told Nils he would never make any progress toward recovery. A doctor’s report, John says, “basically said, ‘Shut up and make the best of the situation.’”
They knew better. In 1981, Nils’ mother, Laurelle, was given a medication that left her paralyzed. Nils and Emrys were toddlers, so John stayed home with them while Laurelle traveled to Brisbane for treatment. She regained her ability to walk, but until just a few years ago, she was unable to get out of a chair without using her arms.
“She knew what it was like to learn to walk again,” John says, “so she had ideas about what to do with Nils, and we were assertive in our approach. We pushed the envelope the whole time. We learned to follow our own instincts rather than be directed. We take advice, but we don’t abdicate our responsibility.”
They took Nils to Singapore for intensive physical therapy. They went to San Diego to meet a stem cell researcher. They found a surgeon in Newcastle, Australia, who replaced Nils’ crushed jaw joint, and they traveled to Gainesville, Fla., for an experimental program that helps people with chewing and swallowing problems.
They knew about Shepherd Center from news media and online research, and got further from a medical professional in Florida. After an evaluation by phone, Nils was admitted to Shepherd Pathways’ outpatient program and, later, to Beyond Therapy®.
The most dramatic change was treating Nils’ muscle tone, which had tightened so dramatically that he was almost incapable of moving. He could speak and swallow only with great difficulty and suffered from nystagmus, the erratic and involuntary movement of his eyes.
Although he was taking a muscle relaxant when he arrived at Pathways, his physician added a second muscle relaxant and administered injections targeting the muscles most affected and dysfunctional.
“Nils is truly inspiring,” says Payal Fadia, M.D., his physician at Shepherd Pathways. “It’s unusual that we see someone three years after their injury make such significant improvement in a short time. But his attitude is so amazing, and it was a pleasure to work with him. We managed to accomplish quite a bit with him.
“Changing his medication combined with the therapy he received here and at Beyond Therapy® has really helped,” Dr. Fadia adds. “His extremity muscles have relaxed reasonably well, as have the muscles in his face, and his eye movement is much less erratic. It’s translated into some nice changes.”
John says Nils loved the atmosphere at Pathways and in Beyond Therapy®. “He loved the gym and related to the people. At some places, the doctors would talk over his head to each other as if he was a log. Here, they kneel on the floor next to him so they’re not speaking down to him.”
Because his injury affected his speech, Nils says, people often treated him “like I was stupid. But here at Shepherd, they gave me hope. They understand biomechanics, and they are friendly and talk to me with respect.”
“They know their stuff, they’re good at it and they take responsibility immediately,” John says of Shepherd’s staff. “In Australia, you sometimes wait months, but here everything goes bang, bang, bang. And another thing: They got Nils up and doing things. They’re very assertive, and they’re also all about getting results.”
Shelley Mitchell, Nils’ case manager at Shepherd Pathways, says: “Nils has done really well. He had stalled out when he got here, and he and his parents had a lot of questions that we were able to address. Now, he has a plan, something that makes sense, where before he didn’t.”
The Grimleys returned to Tasmania at the end of August 2012 and re-opened their hotel in time for spring and summer in the southern hemisphere. Nils, who advocated early release from jail for the young drunk driver who hit him, continued to exercise with the help of an exercise physiologist who trained at Shepherd.
The medication that relieved the tone in his body also left him “looser,” according to his mother, and cost him some of the strength he had regained. “Nils had to go backward before going forward and start over again building strength from the inside out,” she says.
But by March 2013, his strength had returned, his breathing was less labored and the flickering in his eyes diminished. His speech, eating, swallowing and arm movement have all improved significantly.
“Nils’ attitude is that his rehabilitation is his full-time profession,” Laurelle says. “We have set up a gym as his workplace. He starts with 45 minutes of exercises before he gets out of bed and he is still exercising while he watches TV at night.”
The Grimleys were especially heartened by a development that addressed his emotional independence rather than his physical issues. Friends invited Nils to spend a week with them in the North Queensland rainforest. It was his first separation from his parents since his injury, and he had to teach his friends to help him bathe, use the toilet, eat, move around and exercise. He even allowed himself to be strapped into an all-terrain vehicle and bounced about in “the bush.”
“We decided early on that we could not afford Nils’ injury any respect,” Laurelle says. “We take it seriously, and Nils is treated with dignity, but the affliction is derided and laughed at. That’s a ‘very Australian’ approach to adversity, and it has worked for us. Laughter is a powerful tool!”
“Nils and his family have a wonderful attitude,” Dr. Faydia says. They are so positive and motivated, and they’ve seen such great improvement that we are all hopeful that this visit will be even better.”
John says that when they first came to Shepherd they didn’t know what to expect and were thrilled with Shepherd Center’s “marvelous ethos and wonderful culture.”
The results, Laurelle says, speak for themselves.
“Nils is so much ’straighter’ in everything he does, and his movement, though still limited, is more normal,” she says. “He’s taking more and more control of his life. It’s the beginning of a whole new era.”
Written by John Christensen
Photography by Gary Meek
Shepherd Center, located in Atlanta, Georgia, is a private, not-for-profit hospital specializing in medical treatment, research and rehabilitation for people with spinal cord injury, brain injury, multiple sclerosis, spine and chronic pain, and other neuromuscular conditions. Founded in 1975, Shepherd Center is ranked by U.S. News & World Report among the top 10 rehabilitation hospitals in the nation. In its more than four decades, Shepherd Center has grown from a six-bed rehabilitation unit to a world-renowned, 152-bed hospital that treats more than 935 inpatients, 541 day program patients and more than 7,300 outpatients each year.