Sunday, October 26, 2014

Rebuilding the Injured Brain

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For brain injury victims, waking from a coma is not a happy ending but the beginning of a long tale of recovery. Thankfully, a unique local program is helping patients get their lives back – one Wii game and bell pepper at a time.


Austin Alcorn was born on April Fools’ Day; he always thought it was his job to make people laugh. Even after his car flipped seven times, metal and pavement banging together like the cymbals of a wind-up

toy monkey, Alcorn held on to his sense of humor. He channeled it during the darker moments of his recovery from traumatic brain injury, pulling stunts like contorting his big, dark eyebrows to force a giggle from his nurses when his voice failed him.

Alcorn was 18 when he fell asleep at the wheel on a highway near Williams. He broke and bruised a dozen bones, but the blow to his brain put him in a coma and kept him hospitalized for months. After waking up, he had to relearn how to walk, talk and tackle everyday tasks like eating, reading, and putting on a hat.

Experts say recovering from a brain injury is unlike any other healing process. You can’t get on a transplant list, or cure your cranium in a cast like a fractured wrist. The brain houses our personalities, our memories, our ability to count, sing and ask for toast. No two brain injury patients are alike, just like no two brains are alike.

This past December, news outlets buzzed with a heartwarming story touted as a miracle: University of Arizona student Sam Schmid, comatose following a car accident and on the verge of being taken off life support, suddenly emerged from his coma. His unexpected awakening was considered a happy ending. But as brain injury survivors like Alcorn know, it was actually a plot twist that will lead to a long and arduous story of recovery – a story that goes untold, even when it comes to well-known brain injury survivor Gabrielle Giffords.

“Many families think leaving the hospital is the end of their journey,” says Mattie Cummins, director of the Brain Injury Association of Arizona. “It’s really just the beginning. They don’t realize that the probability of them returning back to whatever life they had is low.”

Since his accident, Alcorn has made enormous strides in recovery, thanks in part to a unique team of Phoenix-based rehabilitation experts who not only aided Alcorn with his ABCs, but also helped him re-enter the world of slicing vegetables and earning paychecks. For patients like Alcorn and Schmid, the Center for Transitional NeuroRehabilitation at Barrow Neurological Institute (BNI) is brain injury boot camp. It’s not the end or the beginning of the recovery process, but it is a sweeping step toward a new life.

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On February 4, 2006, Alcorn was on a road trip with a group of friends, taking a detour up to his family’s cabin in Williams on the way to Los Angeles. He had graduated from Mesa High School a year earlier and had just quit his job at a bowling alley. His friend in the passenger seat was asleep. The two girls in the backseat were watching a show on a laptop. When they started to feel the car veer off the road, they screamed to get Alcorn’s attention. The car began to flip, landing on Alcorn’s side first.

Ronda Alcorn, Austin’s mother, says she doesn’t believe in random luck. Her son survived that night with a little help from the universe.

“Right after the accident, there were some things we knew were more than just coincidence,” she says.

A DPS officer was writing a ticket for another car within earshot of the accident and was able to drive to the crash site within seconds, Ronda says. Five drivers stopped as witnesses – two were U.S. Marine emergency medical technicians. Response was immediate; if it hadn’t been, Alcorn might not have made it to Flagstaff Medical Center alive. And if the accident had happened just a month later, Alcorn would have no insurance coverage.

Despite these darkly fortunate circumstances, Alcorn didn’t wake up that night. His friends left the hospital within a day.

When the call came from Flagstaff, Ronda and her daughter, Audra, were packing boxes in their garage, getting ready to move to a new house. Curtis, Ronda’s husband and the children’s father, sprinted out of the Fry’s Food Stores location where he worked. They left their boxes in the front yard and drove north.

At the hospital, the Alcorn family caught a first glimpse of Austin  – bruised, broken, unconscious and strung to a dozen machines. Doctors said he could end up blind or paralyzed or mute – no one would know until he woke up.

“We learned that you can take two identical twin boys with two identical head injuries and they will have different outcomes,” Ronda says.

Over the next three months, Alcorn journeyed through various stages of unconsciousness. First, he was put in a medically induced coma – a long state of sleep. When he showed the first sign of semi-consciousness – a yawn – Ronda jumped up and down beside him. Weeks later, at St. Joseph’s Hospital and Medical Center in Phoenix, Alcorn was in a vegetative state, still unresponsive, though his eyes were wide open. Therapists told Ronda they knew from the look in his eyes that Alcorn was in there somewhere.

“When you think about brain injury, you think about consciousness,” says Dr. Frederick Marciano, neurosurgeon at Barrow Neurological Associates and medical director of neurosciences at Scottsdale Healthcare. A coma is the loss of the two components of consciousness – awareness and arousal, the ability to recognize your surroundings and the ability to wake up.

“Most patients will recover in two to four weeks in coma before moving on to either a minimally conscious state or a vegetative state,” Marciano says, explaining that a vegetative state brings arousal but not awareness. “There’s no real ability to predict with confidence where someone is going to fall in that spectrum. The biggest misconception is that we know what’s going to happen after brain injury.”

Physicians must become myth-busters in managing that misconception, Marciano says. They have to explain to families and patients that while the heart has four chambers, the brain has hundreds of miles of blood vessels and 100 billion neurons, with each region controlling several different functions of movement and emotion.

“It’s important that the physicians spend time with the family and tell them how unpredictable and how lengthy the recovery process is,” he says.

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Brain Injury Association of Arizona director Cummins says that, typically, the longer the coma, the longer the recovery process. She also says that the coma period, while an intensely anxious time for families, is a total blank for brain injury survivors.

Weeks dragged on before the playful light in Alcorn’s eyes returned and he began responding to the people around him. For survivors, this isn’t a flip-a-switch kind of moment. Waking up is gradual. The brain repeatedly hits its snooze button, becoming more alert after each alarm. His first memory after regaining consciousness was using his feet to propel himself forward in a wheelchair.

His first mind-body milestone was picking up blocks and dropping them in a glass jar, Ronda says. But he still had a long way to go. His injuries were all on the left side of his body, including the blow to his brain. But the left side of the brain controls the right side of the body, so Alcorn was left symmetrically broken.

In a video recorded four months after the accident, Alcorn struggles to put a baseball hat on his head. In another video recorded two months later, Alcorn manages to whisper, “Happy birthday, Mom. I love you,” only by repeating every word after Curtis says them.

The accident put a strain on the Alcorn family, both financially and emotionally. Ronda quit her job to assist in Austin’s rehabilitation, despite piling medical bills. Audra, 16 at the time of the crash, had to raise herself while her parents raised Austin all over again, Ronda says. One day in the hospital, Curtis broke down in tears while watching a boy toss a ball around with his father, realizing his own son couldn’t do that yet. At one point, Austin wasn’t making any progress, and the family was afraid he’d get kicked out of therapy.

His family and new family of therapists didn’t give up. They gripped his legs and lifted them up and down, teaching him how to walk again. They repeated the ABCs with him ten times a day. And Alcorn got better. He was released from the hospital and moved back home. But again, recovery didn’t stop there. One day, he asked Ronda, “Who did this to me?” He thought he’d been beaten up. He opened up the garage door and asked her where his car was. His last memory was pumping gas two days before the accident.

Today, Alcorn is 25 and lives with his family in Gilbert. He bikes, skis and kayaks. He works in an accounts payable department. He makes a lot of jokes. The only perceivable signs of his injury are walking and speech impediments: One side of his body drags along as he moves, and his voice is slow and deep. His eyes intensely focus on a point in space whenever he struggles for words.

But the family’s hardship remains, even as Austin progresses. The Alcorns’ house went into foreclosure, and they now rent from Ronda’s mother. In the six years since the accident, Ronda and Curtis have gone on vacation only twice – and felt guilty both times. The ordeal is more immersive than any of the Alcorns would have expected. “People watch TV shows and think that you can just wake up and walk again and be OK,” Ronda says.


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That soap-opera misperception has been reignited by the media narrative of former U.S. Rep. Gabrielle Giffords’ recovery, Ronda says, which has left many brain injury survivors and families disappointed and confused. Many want Giffords, who suffered a gunshot wound to the head last January, to be a spokeswoman for the injury in a more realistic way.

“We are so, so happy that she is getting better,” Ronda says. “But the message that has been sent out is, ‘She’s fine.’ I can tell you, having been there, she’s not fine.”

One woman in Ronda’s support group was so angry at Diane Sawyer’s November interview with Giffords that she turned off her TV and wrote Sawyer a letter, condemning the anchor and her network for the lack of reality in the coverage, Ronda says. She was overwhelmed by the positivity of the segment, which showed minimal hardship and maximum movie moments. The interview’s focus was on Giffords’ remarkable recovery – not the rest of her uphill battle.

Dr. Marciano says he was also surprised by how optimistic Giffords’ medical team was. “Your body can recover, but it’s been my experience that there’s always some neurological change,” he says.   

Cummins says she also wishes the best for Giffords but hopes people realize one reason the congresswoman’s recovery has been remarkable is because her quality of care has been remarkable – not all brain injury survivors have the same resources. As executive director of the Brain Injury Association of Arizona, Cummins provides support groups, educational seminars and medical referrals to a network of more than 3,500 survivors and their family members. “I had people calling me who said, ‘I had the same injury. Why am I not doing as well as her?’” she says.

One of the most difficult parts of the process is acceptance, especially of what Cummins calls the “new normal.”

“You have to understand that you were one person one day and a new person the next,” Cummins says. “You have to find a new path.”


At the Barrow Neurological Institute (BNI) outpatient Center for Transitional NeuroRehabilitation (CTN), a communal rehab program unlike almost any other in the country, it’s not about state-of-the-art equipment and medical machinery. There are no bleeps, bloops or futuristic brain X-rays. Instead, it’s about state-of-the-art people, says clinical director Dr. Pamela Klonoff.

“We operate heavily on a philosophical level. We want patients to become their own best experts,” Klonoff says. It’s why Alcorn can list the details of his accident without remembering a single second of it, and recite his diagnosis and disabilities to anyone who asks.

The hub of CTN is the workout room, where patients practice walking or running on a treadmill, lifting weights, balancing on yoga balls, stretching, and swinging game controllers to make Wii avatars bowl a strike or hit a tennis ball.

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In the adjacent kitchen, patients work on memory and organization skills at one table and meal preparation on the next. In the meeting rooms, they organize hikes, trips and movie outings together. The trips get them out in public spaces, helping them deal with self-consciousness, Klonoff says.

Klonoff has worked for the center since it opened in 1986 and has served as its director since 1993. When it started, the program had five or six people on staff. Klonoff has since assembled a team of about 30 rehabilitation experts – neuropsychologists; speech and language pathologists; psychiatrists; dieticians; physical, occupational and recreational therapists; and vocational counselors. There are usually about 30 patients in the CTN program at a time.

The facility is among two or three in the country designed to help brain injury survivors become truly independent of hospital and home care, Klonoff says. CTN offers three tracks to get there – home independence, work re-entry and school re-entry. Some patients participate in just one of the tracks, while others follow two or all three.

In 2011, the average CTN patient was 38 years old and stayed with the program for nine-and-a-half months. Seventy-five percent of patients were survivors of traumatic brain injury, while others had suffered a stroke, anoxia (lack of oxygen to the brain) or a tumor. Recovery time before CTN admission varies wildly among the patients; some, like Sam Schmid, are admitted into CTN soon after their injury, while others, like Alcorn, have to wait years.

CTN does set requirements for admission into the program – participants in the home independence track can’t have any upcoming surgeries or post-traumatic amnesia, for example, while work/school re-entry participants must already demonstrate home independence and have pre-injury experience in a work or school setting. But more than anything, CTN patients must be motivated, showing “a general sense of willingness,” Klonoff says.

To graduate from CTN’s home independence program, patients must demonstrate the ability to use the telephone for emergencies, make meals for themselves and be unsupervised for hours at a time. It takes up to five sessions of CTN rehabilitation each week, from 8:15 a.m. to 4 p.m., and patients’ progress is evaluated monthly.

Patients graduate from the work re-entry program after successfully spending at least six weeks in a part-time volunteer or paid position. To get to that point, it takes up to four sessions of CTN training each week, from 8:15 a.m. to noon. Both programs keep a constant eye toward the future, helping patients move beyond dwelling on their past.

“The surgeons saved my life, but CTN gave me my life back,” says Kelly Sample, a former CTN patient and owner of the West Valley Italian restaurant chain Cucina Tagliani.

Like Alcorn and Schmid, Sample was admitted to CTN after a car accident. He was a compulsive workaholic at the time of the crash – “type AAA,” he says. One night in 2008, he rolled his car on the drive home from his restaurant, snapping many of his bones, from head to toe. The impact to his skull caused three mini strokes and a substantial loss of vision. It was catastrophic, he says, but it was a wake-up call.

“I’ve seen life and death. Money and business is not as important,” says Sample, now 51 and without any external signs of injury. “Before the accident, I wasn’t touchy-feely at all. Now I have a garden.”

Sample speaks in metaphors and buzzwords shared by his doctors. He explains that his memory is like a filing cabinet with all its files scrambled on the floor. His mantra is “TTT,” or “things take time.” He says every brain injury is like a fingerprint – a phrase doctors use to explain how it affects everyone differently.

“I know I’m playing an extra inning here,” says Sample, who has returned to running manager meetings at Cucina Tagliani but has delegated out many of his pre-accident duties. He’s determined to give back to the people who gave him a second chance, even serving on the board of the Brain Injury Association of Arizona.

He has no memory of the accident, but it took Sample months to open his eyes while riding in the passenger seat on a freeway. Still, he wants to get behind the wheel again someday. His impaired vision prohibits him from getting a license in Arizona, he says, though he’d be clear to drive in at least 14 other states.

Facing accident-related fears is key to recovery, Dr. Klonoff says. CTN psychologists try to bring patients to a point where they’re actually eager to face the cause of their accident.

In September 2009, a horse kicked 22-year-old CTN patient Missy Sullivan in the chest, cutting off the oxygen to her brain. Today, Sullivan does adaptive horseback riding. She loved horses before the accident, Klonoff says, and there’s no reason she should stop.

Adaptive sports help patients become more confident and focused, Klonoff says. Staying active not only strengthens weak muscles, but also helps patients focus on tasks and channel their energy. They can blow off steam and learn to manage the pressure and frustration of recovery.

Many patients struggle with anger management and speak impulsively after their brain injury, Cummins says. But most are just humbled by their experiences, especially teenagers. One of the most common causes of traumatic brain injury is risky behavior, Cummins says, and teenagers are exceptionally good at risky behavior.

“Before, I was kind of a wild guy,” Alcorn says with a slow, absorbing smile. “I lived dangerously. I would skateboard without a helmet.” That’s changed – somewhat.

Alcorn started the CTN program in January 2008 and finished in February 2010, in conjunction with a job-training program at Maricopa Skill Center. Today, he’s active in Arizona Disabled Sports, going out for bowling nights and weekend ski trips. Last year, he received a grant from the Challenged Athletes Foundation to buy a new tadpole bike. He takes speech and hearing classes at Arizona State University and works part-time in accounts payable for Efficiency Mechanical, Inc., a Gilbert heating and air-conditioning company. He does daily stretches to improve his muscle memory and journaling to improve his short-term memory.

While the accident affected many of his physical abilities, Alcorn says he’s lucky the injury didn’t change his personality – other than making him a little bit more stubborn and determined, Ronda says. Today, he’s more of a joker than ever, often laughing about his own disabilities. You tell him he’s photogenic and he smugly responds, “I know.” He does a killer Batman imitation – it’s all in the eyebrows.

More than anything, he wants to start driving again. In December, he was cleared by a neurologist and began preparing to take his driving test. But then he had a seizure, preventing him from driving for another three months. When he tells the story, he looks away, a cloud forming over that sense of humor.  

Second to driving, Alcorn wants to start jogging again – he ran track in high school before the accident. But every time he speeds up, he loses control of his right hand, the indifferent limb flapping up to his shoulder.

“I’m like, ‘What’s up, dude?’” Alcorn says, dramatically holding his hand to his cheek, mocking himself with that infectious smile. “I keep trying, though. I just don’t want to grow old and not be active.”

Brain Builders
At Barrow’s Center for Transitional NeuroRehabilitation, seemingly simple activities take brain injury patients a long way toward recovery.

Chopping vegetables — Familiarizes patients with basic meal preparation skills, helping them be independent at home.

Playing Wii Sports — Improves hand-eye coordination and can serve as a light workout, giving patients something fun and productive to do at home with family and friends.

Daily activities — The block design task, for example, requires patients to use colored blocks to construct 10 arrangements that match the designs on 10 cards. The task helps with attention, concentration and problem solving.

Journaling — Helps improve short-term memory, which is damaged or lost after many injuries.

Planning group outings — Emphasizes teamwork and decision-making, helping patients redevelop collaboration and leadership skills.

Going on group outings — Helps patients deal with post-injury self-consciousness by putting them in a public, social environment outside the hospital.

 

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