Talk about black humor. Ask Cpl Lucas Sassman about his progress in the 6 months since he was shot by a sniper in Iraq, and the 21-year-old National Guardsman from Maine responds sardonically, “I don't have a huge hole in my head.”
As the jarring scar atop his head attests, the implicit ending of that sentence is “anymore.” The line of discussion feels no less surreal when Carla Alexis, PT, who focuses on neurologic rehabilitation and vestibular therapy at Walter Reed Army Medical Center's Defense and Veterans Brain Injury Center in Washington, DC, says matter-of-factly, “Corporal Sassman had no skull. When he first got the plate put in, that screwed up his balance even more.”
Undoubtedly it helps that Sassman, buoyed on this early December day by the presence of his wife, Melissa, at his side, tries to keep a smile. As he walks on an elliptical machine that mimics a stair-stepper, he kids Alexis that she's “wicked mean” for working him so hard. The PT, who explains that keeping Sassman moving in a vertical plane “stimulates his vestibular system and encourages gaze stability,” says she appreciates his “dry humor.” She recounts that during a convalescent trip to Maine, before he'd had the cranioplasty that fit over his brain a plastic replica of his missing skull, Sassman had decorated the foam helmet protecting his brain with a fabric adorned by Ninja Turtles.
But humor only will take Sassman so far. Among the many cognitive, balance, and other physical and emotional byproducts of his traumatic brain injury (TBI) — a condition that has been called the “signature injury” of the US military missions in Iraq and Afghanistan (see sidebar on page 22) — are spotty memory, decreased motivation that may be linked to TBI and/or depression, extreme frustration, the peripheral vestibular condition benign paroxysmal positional vertigo (BPPV), and persistent clonus. The latter is an abnormality in neuromuscular activity characterized by rapidly alternating muscular contraction and relaxation — in this case in Sassman's left leg, which involuntarily and repetitively bounces up and down.
But the civilian PT cites progress. “Corporal Sassman is not quite as vertiginous,” Alexis says. “He certainly has improved since he had his cranioplasty. We've worked on balance, coordination, reducing his motion intolerance, and insensitivity to his left side.” Indeed, Alexis and other vestibular and neurologic specialists in both the military and civilian sectors who work with patients who have TBI are heartened in their efforts by many success stories — individuals who sustain devastating injuries but go on to lead fulfilling, if altered, lives.
Sassman is a licensed tattoo artist, and Alexis sees that as a potential career option should he choose to pursue it. She hopes to interest him in other artistic activities, as well, “for sensory stimulation, practice at multi-tasking, as an outlet for his creativity, and as a way to exert control.”
Sassman “obviously is frustrated, and has not really looked at what he will do in the future,” Alexis says. “I'll continue to work with him and try to get him to consider various options, little bit by little bit.”
A “Minor” Accident
The circumstances surrounding Anne Forrest's TBI and struggle toward recovery are vastly different from those of Sassman, but the importance of physical therapy to her progress is similar.
Forrest was a 39-year-old PhD economist at an environmental research center in Washington, DC, in late spring 1997 when she bumped her head in a fender-bender near the Lincoln Memorial that seemed minor at the time but would have an outsized effect on her future. Plagued in the accident's wake by memory problems, severe headaches, and other symptoms, she was diagnosed with a “mild” TBI. (The term can be something of a misnomer, in that the gradations of TBI — mild, moderate, and severe — relate to whether and for how long the person loses consciousness, which may not accurately reflect the long-term consequences of injury. Sassman, like Forrest, never lost consciousness when his TBI occurred. His case, too, is considered mild.)
Four years post-accident, Forrest was unemployed and living in her native Texas when a referral from a neurotologist (inner-ear specialist) brought her to Ann Katz, PT, a home health PT specializing in vestibular therapy. Even that long removed from having sustained her TBI, “Anne looked like a lost child,” Katz recalls. “She had problems with every ocular motor skill, including smooth pursuits (linear movement), saccades (looking quickly in each direction without moving the head), convergence (eyes coming together to focus), and VOR suppression (intrusion of the background into the foreground; the acronym stands for vestibulo-ocular reflex). Her VOR also was impaired, which made her unable to read. She barely could use a computer because her eyes jumped around.”
An attempted session at the gym quickly was aborted because Forrest became dizzy and panicky with sensory overload at the sight of the shiny machines and mirrors, even at 10 am with few people at the facility.
Katz saw Forrest nine times over a 6-month period in 2001, working with her on head and eye movements and standing exercises, and setting up workout equipment in Forrest's home. Repetition was key to the therapy routine, in keeping with developing neurorehabilitation research described previously in PT.1 Forrest made progress in many areas with Katz's help, but one success in particular stands out to Forrest: She was able to dance at her own wedding in October 2001.
“That was huge!” Forrest exclaims. “It was meaningful in lots of different ways.” In fact, she says, she scarcely can understate her appreciation for Katz's assistance. “She taught me a lot about how my body was functioning — the many ways in which damage to my vestibular system was playing into what I was going through,” Forrest says. “To have her come in and say, 'You have these problems that no one's identified before, and I know how to solve them and help you get more exercise and function better,' well, that was tremendous.”
Forrest, now 50, has made great strides during the nearly 11 years since her accident — having received additional therapy and having benefited throughout from the unfailing support of her husband, Michael Crider. Again living in the Washington, DC, area, she now can drive a car as fast as 45 miles per hour, play a racquet sport that has helped the one-time Yale varsity volleyball player reclaim her self-identity as an athlete, and hopes at last to return to work later this year — as a part-time paid advocate for people with brain injury. Forrest, after all, has faced the gamut of hurdles that can beset people with TBI, from convincing skeptics that outwardly normal appearance may mean little, to securing proper treatment, to finding the resources to pay for that treatment, to coping with all the emotional ups and downs.
Forrest does carry some minor celebrity into the public arena: She was the focus of a lengthy profile in the March 2007 issue of Washingtonian magazine that the Brain Injury Association of America has posted on its Web site (www.biausa.org/education). Forrest's story, the organization says, “has helped patients and families understand how an invisible injury can cause unexpected damage, and how hard recovery can be.”
Katz, ironically, has worked with only two patients with TBI in her 30-plus years as a PT, although she regularly treats stroke victims and others who face many of the same physical and cognitive issues. She is thrilled with Forrest's continued progress, and expresses deep gratification for the role she was able to play in aiding Forrest's climb to the ability level she has attained. “Anne,” Katz says simply, “is a special lady.”
Complexities of Treatment
“I think this is one of the most challenging neurologic patient populations to treat, because no two brain injuries are the same,” says Jeanne Lojovich, PT, NCS. Now the academic coordinator of clinical education and an instructor in the physical therapy program at the University of Minnesota, she was among the founders of the brain injury interdisciplinary team while on staff at the Minneapolis VA Medical Center.
“Not that any two neurologic injuries are the same, but TBI is even more unpredictable,” Lojovich says. “Because whether people are thrown from a car on the highway or struck by shrapnel from an IED (improvised explosive device) in Iraq, the areas of the brain that are affected are different for every person. Determining each patient's needs is like doing a puzzle: What abilities have been affected? What was spared? What can we use?”
Karen McCulloch, PT, PhD, NCS, an associate professor of physical therapy at the University of North Carolina-Chapel Hill, is the secretary of APTA's Neurology Section and a founding member of the section's Brain Injury Special Interest Group (SIG). “Sometimes it does feel weighty working with patients with TBI, in that there can be so many obstacles to their achieving a fulfilling quality of life,” she says. “However, I've always kind of enjoyed being in the position of helping patients gain hope that, 'Maybe I could do that again. Maybe I could go to the gym and work out. Maybe I could do some of those things that were important to me before the injury.”
As illustrated by the cases of Sassman and Forrest, recovery from TBI can be slow and excruciatingly incremental. PTs serving this patient population must weave through the complexities of each patient's particular needs and optimal care, working in close concert with other members of a care team that may include one or more physicians, a cognitive therapist, an occupational therapist, a speech therapist, an audiologist, and a recreational therapist. But the challenges hardly are limited to care provision itself.
For one thing, PTs who get frustrated with patient noncompliance had best not think about serving patients with impaired memory who may need to be told the same things over and over again.
“I've been working with Cpl Sassman for 6 months and he keeps not remembering things I've told him,” Alexis says. “So, I can't have any problem with constantly re-explaining things to him and breaking down my instructions to an elemental level. I try to come up with allegories and parallels that put pictures in people's minds that might help then retain more of what I've said. I try to make things relevant to the individual's interests. I might say, for example, 'This is sort of like a Bill Nye the Science Guy experiment, where we're going to break up these crystals inside your inner ear. Think of your inner ear as being like a snow globe.'”
Brain injury also can affect people's tolerance of adversity, social etiquette, and ability to self-censor in ways that can make them less than model patients.
“Patients with TBI may be agitated,” says McCulloch. “They can be belligerent and not always very nice. That can feel fairly punishing at times. Later, they might have no recollection that they ever did or said things to you that were kind of mean.”
And it isn't just the patients themselves who may lash out in frustration over injuries that, despite the best efforts of PTs and other members of the care team, may leave the individual forever changed in major or more nuanced ways.
When Lojovich was working at the Minneapolis VA Medical Center, “it could be bad enough facing family members when active-duty military personnel came in with TBI and other serious injuries from car accidents or other non-combat causes.” But add to that the overlay of war, and “there can be a lot of anger,” she says. “Especially if the family questions the reasoning for the war. And sometimes that anger's going to be directed at you, the PT. Their son isn't walking, or isn't able to do this or that, and somehow that's your fault.”
“The PT needs to try to understand what the family is going through and take them along through the rehabilitation process, emphasizing the progress that's been made,” Lojovich says. “It's the PT's responsibility to be truthful yet compassionate — toward the patient and toward family members who are undergoing a grieving process. You can't lose your temper or become upset. And you can't internalize anger that's misdirected toward you and start blaming yourself. If you do that, you aren't going to last in your job.”
The demands on PTs serving patients with TBI in the military are in some ways unique, in that return to active duty — which is many patients' goal — requires a high level of recovery that may be particularly difficult to attain. Alexis has become experienced in playing the role of counselor and conscience, as well as PT.
“If an individual is not going to be able to return to active duty, I'll talk about his role as 'battle buddy,' and the safety issues involved,” she says. “I'll ask, 'Do you want to be the weakest link out there in the field? You've had to cover for that guy before. Do you want to be that guy?'”
Whether or not return to active duty is realistic, there's the challenge of reinforcing that individual's sense of military identity, which is likely to serve the patient well through rehabilitation and beyond — in civilian life as well.
“I call my patients by their rank and last name to reinforce their self-image and encourage the military mindset and sense of discipline,” Alexis says. “I'm not going to say, 'Josh, do this,' and encourage an informality that may facilitate the patient thinking, 'I don't have to get my hair cut. I don't have to shave. I can talk back. I can show up late.' Because the fact is, none of those things is acceptable in the military. If these patients want to return to active duty, they must keep in mind what's expected of them.”
“Even if they don't stay in the military,” Alexis adds, “they're still going to have bosses in civilian life. They're not going to get a free ride because they had a head injury. They're not going to have success saying, 'I shouldn't have to do this.'”
Never a Dull Moment
If the challenges are many for PTs who treat patients with TBI, the rewards are even more plentiful, says Lynnette Leuty, PT, NCS. A former member of the Brain Injury Rehabilitation Team at the Sister Kenny Rehabilitation Institute in Minneapolis, she now is an outpatient therapist there, serving clients who have brain injury and face other neurologic conditions.
“TBI is a life-changing event, and it's really an honor to try to help these individuals get back what they lost,” Leuty says. She recalls in particular one patient who came into Sister Kenny with a TBI that left him only minimally conscious, whose long-term outlook was a question mark. That patient walked out of the facility after months of rehabilitation and now has written a book about his experiences—soon to be published and dedicated in part to his care team — that is meant to inspire other people coping with the effects of TBI.
“I'm thinking that maybe I'll be able to draw things from the book that will help me provide better care to patients with brain injury,” Leuty says. “Maybe I'll discover that something I hadn't really thought about was particularly important to him during his recovery.”
PTs who serve patients with TBI say the intense collaborative aspect of their work is an additional source of satisfaction.
“The Minneapolis VA Medical Center has a fabulous [brain injury] team,” Jeanne Lojovich says. “Any patient benefits from close consistency among practitioners, but with this patient population it's all the more imperative. There really cannot be any inconsistency. As a team member, I'd come and talk to the OT or the speech therapist and ask, 'Have you seen Joe?' and 'What's your take on this?' The other practitioner might have a different view from mine. We'd all come together and problem-solve. I enjoyed that process tremendously.”
Lojovich now shares those experiences with her students. She assures them that PTs charged with the arguably “scary” task of serving patients who have complex physical, cognitive, and behavioral issues hardly go it alone. “When you work closely with your colleagues and are mindful of the patient's cognitive level and can anticipate behavioral issues, the potential for success increases,” Lojovich notes. “You're less likely to get frustrated and say, 'The patient has reached a plateau,' or 'He just can't get it.'”
The very fact that the work is challenging is a big plus, in Leuty's book.
"That's an aspect of it that I really like," she says. "This patient population keeps you constantly thinking, adjusting, and problem-solving until you hit on the treatment approach that works best with that particular person."
One thing the work definitely isn't, Lojovich observes, is dull.
“Boredom is the kiss of death for me, and I honestly can say I never was bored as a member of the brain injury team,” she says. “Every day was different — exciting and unpredictable. I thrived on that.”
One aspect of that unpredictability can be unintended humor. Patients with cognitive issues might not be as guarded in their comments or as moored to social propriety as is the general population. In other words, people with brain injury just may say the darndest things.
Not all of those comments are publishable, Karen McCulloch says with a laugh. But she's willing to share one such interaction. “One day I was walking with a client during his therapy session and he suddenly asked me, 'Karen, are you married?' I said, 'Yes.' He took a few more steps, then blurted out, 'Happily?'”
Lojovich, for her part, never will forget one of her very first patients with TBI, who had been in a coma. She'd been performing passive range of motion and sometimes would ask him if he was experiencing pain, even though he may not have heard her and at any rate could not respond.
“When he came out of the coma,” Lojovich recounts, “the very first words he said were, “[Expletive] yes, it hurts!'”
Eric Ries is associate editor, manuscripts. He can be reached at email@example.com.
1. Ries E. Rehabilitation and the brain: STEPping into the future. PT — Magazine of Physical Therapy. 2007;15(11):18-24.