Hope Emerges at Shepherd Center
Shepherd Center’s Disorders of Consciousness Program aims to bring healing – and hope – for patients with low-level consciousness due to brain injury.
At six-foot, five-inches tall, 27-year-old Drew Forsey towers over most around him. In 2014, his team of physical therapists at Shepherd Center stood at the opposite end of the spectrum – the tallest among them nearly a foot shorter. When they worked in tandem to lift Drew out of bed and get him vertical, it was no small accomplishment – especially con-sidering that Drew could not yet help. He was still in a state of unresponsive wakeful-ness after sustaining a traumatic brain injury in a cycling accident.
At first, the sight was somewhat surreal for his family – to see therapists daily raise an unresponsive Drew and secure him in a standing position against a padded support. Gradually, however, the scene provided Drew’s family and friends with a different sensation.
“It gave us hope,” says Emily (Taylor) Forsey, Drew’s then-fiancée. “It showed that the staff had hope. It showed they thought it was possible for him to get better, even at such an early stage. I can’t convey how encouraging that was.”
Drew, who lives in Chattanooga, Tennessee, spent more than a month in Shepherd Center’s Disorders of Consciousness (DOC) Program, which began in 2000 and is one of only a few dedicated programs nationwide providing specialized services for people in low-level states of consciousness caused by brain injury. The program’s proac-tive philosophy is based on research and experience, says Susan Johnson, MA, CCC-SLP, director of Shepherd Center’s Brain Injury Rehabilitation Program and founder of the DOC Program.
“Early mobility, even with someone in a state of minimal consciousness, enhances the likelihood of recovery,” Johnson says.
“Our aim is to provide an environment that supports recovery. We try to make things feel as normal as possible, so people aren’t just hearing the beeping of hospital instruments while they lie in bed. That’s not what happens in people’s lives.”
In real life, people get up in the morning, shower, get dressed, move around, go to the gym and on family outings. So, that’s what patients in the DOC Program do, too, thanks to the efforts of nurses, therapists and other treatment team members. Patients receive tube feedings at normal meal times, so they can feel both hungry and full, and they alternate rest and activity times to both expend energy and recuperate.
Shepherd Center admits about 50 patients annually to the program. Drew is among the 55 to 65 percent of patients who eventually emerge to full consciousness.
“It was fascinating to see how the brain could start to heal and awaken,” says Drew’s mother, La Ronda. “It was slow, but each day brought changes in what Drew could comprehend. That
Drew was able to recover and become independent – that Drew and Emily’s story has a happy ending – much of that is due to the care given to Drew at Shepherd Center.”
DISORDERS OF CONSCIOUSNESS
One of the first things that Shepherd Center’s medical team does is assess each DOC patient’s level of emergence and response to their environment.
“The experience with Drew was such an education in learning how emergence works,” Emily says. “You see depictions of it on TV, and it’s ‘bada bing, bada boom,’ he’s awake all of a sudden! But it’s not like that in real life. Waking up is a process, and different people reach different stages at different paces.”
Once a baseline for the patient has been established, an interdisciplinary medical team crafts an individualized plan of care that balances medication management, therapies, environmental stimulation and rest. Each patient in the DOC Program is treated by a doctor, nurses, neuropsychologist, speech pathologist, dietician, family counselor, case manager, and physical, occupational and recreational therapists.
In Drew’s case, it took more than two months to regain complete consciousness. During that time, his family participated fully in his care and treatment, doing everything from learning how to stretch and re-position Drew to administering his medications and helping to assess his progress.
Shepherd Center physiatrist Andrew Dennison, M.D., emphasizes that family involvement isn’t only for morale or caretaker training purposes, either.
“There is evidence that suggests patients with a DOC respond in a different way to loved ones than strangers,” Dr. Dennison says. “We can see proof of that in neuroimaging. The brain responds to a voice it knows differently than to one it doesn’t. Family members being part of the process is one more tool we can use to help maximize recovery.”
After graduating from the DOC Program, Drew continued through Shepherd Center’s inpatient Brain Injury Rehabilitation Program, as well as Shepherd Pathways, the hospital’s outpatient rehabilitation program for people recovering from brain injury.
Today, Drew is fully independent. The longtime cyclist is riding again, now on his recumbent Cattrike. Two years to the day of his accident, Drew even went for a ride on the bike he was injured on, which his dad had repaired for him.
“I wanted to make that day special for a better reason,” Drew says. “It was a way to conquer my fear and reclaim that day for myself.”
A longtime filmmaker, Drew is also documenting how others conquer their fears. In January, the Chattanooga Area Brain Injury Association commissioned Drew to create a video of the group’s “Unmasking Brain Injury” project, which enables brain injury survivors to create masks based on their own journeys. Drew will interview each patient about what their masks represent, and enable fellow survivors to use their voices and share what it’s like to live a full life after a brain injury.
Drew, a chemistry degree graduate, is also taking some classes at his alma mater, Southern Adventist University, with one eye on improving his short-term memory and knowledge retention – and another eye on a possible career shift.
“I’m in a pathophysiology class now, and that is directly because of the staff at Shepherd Center and how inspiring they were,” Drew says. “I’m thinking I might like to help people how they helped me, maybe even as a recreational or occupational therapy assistant.”
Drew is also back to documenting wed-dings, special events and travels through his Drew Forsey Films company – though he was all too happy to pass on photographing one wedding last year. On October 10, 2016, seven years to the day of their first date, Drew and Emily married.
RISING TO THE CHALLENGE
For Ruth Batchelor, the date that now means most to her is September 15, 2016. That was the day she brought her daughter Jordyn Engleberg home to Decatur, Georgia.
Eighteen-year-old Jordyn sustained a traumatic brain injury in a car wreck in May 2016 – the morning of her Jefferson High School graduation.
At Shepherd Center, Jordyn received the same level of care given to all patients in the DOC Program. Her body healed. Her brain, however, did not progress beyond a state of unresponsive wakefulness.
“Some people have a child who recovers to a fully conscious level,” Ruth says. “My blessing is that her body is ready if her brain ever comes back. She’s healthy.”
At Shepherd Center, Ruth dedicated herself to one thing – learning everything possible about how to take care of her daughter and improve her quality of life.
“I framed my mind around that pretty early,” Ruth says. “Some folks rely on God, others on science. I don’t have much control over either of those realms. But what I do have some control over is doing everything in my power to keep her healthy.”
Empowering family members like Ruth to care for their loved ones, no matter what stage they reach, is part of Shepherd Center’s mission.
“This is one of the most challenging situations possible for caregivers,” Dr. Dennison says. “But I have learned how tough and resilient families can be when they need to be. Our goal is to equip these highly engaged families to take their loved one home.”
Ruth’s training was tested quickly. Within a week of returning home, Jordyn developed a series of infections, and there were aspiration concerns with Jordyn vomiting. Ruth and her husband, Keith, took turns sleeping to keep a constant eye on Jordyn.
“It was tough, but we could handle it because of how Shepherd Center prepared me,” Ruth says.
Thankfully, they also had an ally. When a patient is discharged from Shepherd Center’s DOC Program, they are assigned a transition support coordinator to serve as a resource for families during their first two months at home. Jordyn’s transition support coordinator was Caitlin Tolcher LaCour, a nurse case manager.
LaCour and Ruth met the week before Jordyn left Shepherd Center, and LaCour helped Ruth with paperwork and applications related to government assistance programs, nonprofits and other community groups that could offer support. When Jordyn began getting sick that first week at home, LaCour was the first person Ruth called.
Thanks to Ruth’s persistence and LaCour’s advice, Jordyn’s infections were properly treated.
“Honestly, Ruth’s success started when they were still in the inpatient program at Shepherd Center, with her commitment to training and learning all she could from Jordyn’s team,” LaCour says. “She was confident when she left, which made the challenges after discharge a little more bearable. Ruth’s commitment to Jordyn has never wavered.”
A REWARDING LIFE
Being in a state of persistent unresponsive wakefulness doesn’t prevent Jordyn from living full days.
On a typical day, Ruth gets Jordyn up around 10 a.m. and puts on a mixed CD of upbeat music that seems to pep up Jordyn. Ruth also plays music, movies and TV shows that Jordyn loved before her injury. Most days, Jordyn goes outside for at least an hour. Ruth still does exercises and stretches with Jordyn that she learned at Shepherd Center. Jordyn doesn’t return to bed until it’s time for her overnight feedings.
Jordyn’s stepfather, Keith, has learned everything from Ruth so that he can take care of Jordyn when he’s not working and give Ruth a break. Jordyn’s father, Brian, calls twice a week to talk to Jordyn, and he comes over every Sunday.
Though there have been many adjustments, Ruth says she never could have imagined how comforting and healing it would be to share so deeply in Jordyn’s new life.
“The change was as large as having a child for the first time,” she says. “It changes how you do things, how you schedule things, how you make decisions. Everything.”
Today, Ruth shares her message with newcomers to Shepherd Center’s DOC Program as a peer mentor and member of Shepherd Center’s Caregiver Advisory Council.
“Life after Jordyn’s brain injury has been full of blessings, and I’m glad to share that,” Ruth says.
“It’s heartening to hear the stories of those who fully recover from injuries like these, but stories like Jordyn’s and mine, those stories are rewarding and loving and positive, too.
“I recognize that I’m never going to have the girl back that I had before, but that doesn’t mean that life isn’t enjoyable,” Ruth says. “Life with her is still rewarding and full. And if normal people like me are capable of doing this at home and having a positive experience, that’s a powerful thing to share with others.”
Shepherd Center uses the Coma Recovery Scale-Revised to track patients’ progress. This serial assessment looks at 23 key behavioral indicators, including auditory and visual responses, motor skills, oromotor skills (such as the ability to control the mouth, lips, tongue and throat in swallowing), communication capabilities and response to stimulation. These assessments – along with factors such as age, severity of injury and the area of the brain damaged – help medical staff create individualized treatment and therapy plans for patients, and to educate and train family members on long-term expectations and care.
THE PRIMARY DISORDERS OF CONSCIOUSNESS ARE:
A coma is characterized by complete unresponsiveness and lack of a sleep-wake cycle. Most patients do not stay in this state very long. They either do not survive the injury or condition that caused the coma, or they transition to the next state of consciousness.
Commonly described as a vegetative state, this disorder of consciousness is characterized by patients having normal sleep-wake cycles and an ability to open their eyes, but not the ability to communicate, follow commands or express emotion. In this state, patients might be able to respond reflexively in some ways, including in response to movement or noise, but there is no ability to consistently track those objects or sounds. Some patients may stay in this state indefinitely, in what is described as a persistent state of unresponsive wakefulness.
Minimally conscious individuals are capable of some sort of purposeful activity beyond reflexive movements. They can track objects and sounds, and they are inconsistently able to follow commands, communicate and express emotion. When a patient attains this level of consciousness, the odds of full emergence improve significantly.
FULL EMERGENCE TO A POST-CONFUSIONAL STATE
Reaching this state means a patient no longer has a disorder of consciousness. Medical staff use two primary factors to determine whether a person has fully emerged – the ability to communicate consistently and accurately, and the ability to purposefully use objects. “Those actions require the use of neural networks and different parts of the brain, so it shows their brain is able to make those connections,” says Andrew Dennison, M.D., medical director of Shepherd Center’s Acquired Brain Injury Program.
Written by Phillip Jordan
Photos by Louie Favorite
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 743 inpatients, 277 day program patients and more than 7,161 outpatients each year in more than 46,000 visits.