In fall 2016, Jessica Schwartz '05 was presented with the Corporate Citizen Award by the Brain Injury Association of New York State for her work creating a yearlong, post-professional, and multidisciplinary concussion management program with Evidence In Motion.
Since we ran this story, Jessica Schwartz ’05 has been contacted by at least 30 people who were positively affected by the article, which detailed her experience with post-concussive syndrome and her advocacy for proper concussion treatment.
Jaime Seamans, M.S. ’13, emailed Schwartz as soon as she finished reading the article. “As it brought me to tears, I realized that I had to email you, because I am basically you, now,” she wrote. In September 2014, one of Seamans’ clients with severe autism pushed her backwards down a flight of stairs. She was diagnosed with post-concussion syndrome by urgent care doctors and had many of the same symptoms that Schwartz described. “Reading your article gave me hope, and that is why I cried. I need to have hope. I want to drive. I want to work. Like you, I just want to be a normal 30-something year old again. And like you, I’m really still mourning my old self and coping with my new self. So thank you for your article and for sharing your experience. I needed that. ”
More than a year after the accident, Seamans said her vision therapist was hopeful that she might work and drive again by this coming March.
A current student who had suffered a traumatic brain injury in 2013 reached out to Schwartz to thank her as well. “It meant so much to me that she was working to increase awareness about the lingering effects of those who have suffered a traumatic brain injury,” he said. “She’s an inspiration to me as well as the many others who suffer in silence, and I’m glad that it is her voice that speaks on our behalf.”
It was a minor fender bender on the streets of Manhattan. The airbags didn’t go off, and there were only a few scratches on the rear bumper. In terms of accidents, it would be completely forgettable, logged among some 49,000 other “nonfatal accidents” to happen in the city that year.
But this seemingly inconsequential accident would take Jessica Schwartz ’05 out of work for 14 months and put her on the path to being one of the most vocal advocates for post-concussion care in the physical therapy profession.
Jessica Schwartz '05 discusses how she’s bridging the gaps in concussion treatment to help patients like herself.
Concussions have been a hot topic in the news lately, especially in relation to football. Several thousand current and former National Football League players even brought a lawsuit against the league, alleging that the organization hid information about the long-term impact of concussive blows.
Of course, concussions aren’t limited to football players. The Centers for Disease Control and Prevention estimates that 1.6 to 3.8 million concussions occur each year, on and off the playing field. But there are still a lot of misunderstandings about how to treat a concussion (view concussion myths). And there’s even more misinformation surrounding post-concussion syndrome, a disorder that has various symptoms and can last for weeks, months, and even years after the initial injury.
Schwartz underwent 14 months of often grueling rehab to overcome the symptoms she was experiencing, which included balance and vision issues; pain in her head, neck, and shoulders; short-term memory loss; difficulty expressing herself; and depression. The process left her not only with a redefined concept of normal in her day-to-day life but also with a unique perspective. As a doctor of physical therapy, Schwartz actually worked with concussion patients prior to her accident, but her experience gave her first-hand insight into how misconceptions about concussions — particularly those that persist for weeks and months — still shape diagnosis and treatment, and how recovery from these injuries requires multiple treatment interventions.
“Despite everything I thought we knew, I realized there were so many gaps in [the understanding of] concussion, even in the medical field. I was not only experiencing some of the best care in the world; I was also — as patient and provider — recognizing the gaps,” Schwartz said.
She’s now made it her mission to help spread evidence-based information about concussion diagnosis and treatment to health-care providers. Schwartz is developing a yearlong post-professional certification program that is intended for a multidisciplinary audience: physical therapists, physicians, nurses, athletic trainers — anyone who might treat a concussion patient. She believes this program is the first of its kind internationally for concussion education. This spring she was also named a spokesperson for the American Physical Therapy Association (APTA). She is doing speaking engagements, which she describes as TED-like, and is harnessing the power of storytelling to increase awareness of concussion identification, treatment, and management, using her own experience as the case study.
Though the car that rear-ended her Prius only pushed it forward a few feet and left a few scratches on the bumper, Schwartz said it felt like a Mack truck had hit her. She felt hazy, and the pain in her skull was so focused she could have pointed to it, though she doesn’t think she hit her head on anything. When she stepped out of the car to confront the other driver, she grasped the roof of her Prius to keep steady. The men riding in the car that hit her weren’t sympathetic.
“They thought I was faking it, including the cop [who responded],” she says. “He tried to review with me, and said, ‘Ma’am, you do know the difference between a car that’s going 30 miles per hour and a car that’s not?’ I did. I said, ‘Yes sir, life and death.’”
Schwartz knew that the general public still holds many misconceptions about concussions, despite the surge of new findings that have emerged over the last decade or so. At the time of her accident, she worked in a clinic in northern New Jersey that was one of a handful that offered concussion rehabilitation in the state. She also knew the symptoms, protocols, and latest research on brain injuries. But even she didn’t want to believe what she experienced after the crash. “I was fighting it. I was trying to push through,” she says.
Only at the urging of her clinic CEO and her mother, both of whom she’d called from that New York City intersection, did she decide to go to the emergency department by ambulance. She underwent tests and received paperwork that confirmed she’d sustained a concussion. Her mother picked her up and brought her home. “And that was it,” Schwartz says.
Except it wasn’t.
“When doctors don’t know what to do, we tell patients to rest,” Schwartz said. That’s the general advice for concussions, and it’s not necessarily wrong for the first few days or weeks after sustaining one. But it was still a challenge for her to rest completely. Her accident was in early October, and for most of that month she continued to work her usual 13-hour shifts three days a week and to rest on off-days and weekends.
A few weeks after the crash, Schwartz went to see an orthopedist for unrelenting migraines and pain in her neck and shoulders. The specialist spent “all of five minutes” looking her over before referring her to a neurologist. She got in that same day, but the visit left her vexed after being given “five prescriptions for an acute brain injury [diagnosis].”
When she questioned the neurologist about the prescriptions he had given her—she knew they would stimulate her brain rather than relax it — he told her they were in the habit of prescribing meds to patients who insisted that they just wanted to get back to work, as Schwartz had. “I knew I was being medically mismanaged at that point,” she said.
So Schwartz took matters into her own hands and admitted herself to the Concussion Center at the New York University (NYU) Langone Medical Center in November 2013. Schwartz is familiar with NYU. After graduating from IC with a degree in exercise science and earning her doctorate at Dominican College, she was selected for NYU’s first orthopedic residency program for physical therapists.
For a year after her accident, she underwent rehab there for 10 or more hours a week.
In addition to physical therapy for head, neck, and shoulder pain, her initial regimen included occupational therapy for her vision issues. One of her eyes was not tracking objects correctly. She was unable to look someone in the face during a conversation without getting headaches, had a difficult time looking upward, and was unable to tolerate bright lights or visually complex environments with a lot of colors and contrast. A trip to the grocery store left her sick for days. Even simple motor tasks like flipping a magazine page could make her extremely ill, and when she tried to read, the letters would appear to float off the page and move in front of her. Even the effort of trying to sort colored blocks — the type children play with — was enough to reduce her to tears.
She also underwent physical therapy for balance and spatial orientation. Neuropsychology was added to the list because Schwartz was also suffering from concentration issues. She said she would be in the middle of a conversation and then, “I would be mid-sentence and completely lose my train of thought not knowing what I was talking about or the topic at hand.” From there she received a recommendation for speech therapy to help her regain her ability to listen to and express complex thoughts.
She also started talk therapy outside the NYU Concussion Clinic. Her ailments left her with a worry she’d never be a normal 30-something again and made her fear she was letting down her colleagues and patients. “It was really tough to understand how I could be so sick after something so benign,” Schwartz said. “It was a really big struggle during the first three months because I was in some hard-core denial.”
Over the next several months, Schwartz and her specialists pinpointed what she refers to as the “deficits” of her condition but not without a lot of trial and error. “When you’re working with concussion patients, you really don’t have a lot [to work with] besides their subjective information,” she said, “which is often, ‘my head hurts,’ ‘I have pain here,’ or ‘my eyes hurt.’”
Improvement for Schwartz came gradually. By April 2014 she was able to read again. Eventually her migraines diminished from daily to weekly, then monthly. Even being able to walk and turn her head simultaneously was a major win. “There were these little gains that [might not] seem like a big deal, but they were huge,” Schwartz said. She finally returned to work in early December 2014, nearly 14 full months after being convinced to take a week off work to rest completely.
The Next Steps
In early 2014 Schwartz began a website and personal blog at PT2Go.co in order to stay “synaptically” sharp. At that time she was still unable to read, which had proved frustrating. As she underwent rehab, she discovered a tolerance for reading on her laptop if she placed it on her belly while lying supine because it is easier for the eyes to work together when looking downward. Schwartz shared this and other stories of concussion management and also posted the stories of others dealing with post-concussion syndrome, turning PT2Go.co into a forum for medical professionals, where they could find and share evidence-based medical information.
Her blog led to her current opportunities with the American Physical Therapy Association and Evidence in Motion, the organization for which she’s developing the post-professional certification course. One post in particular gained a lot of attention, much of it from clinical professionals whose work she was familiar with and admired. It was a commentary about encouraging clinicians and patients to consider treatment methods and options from a positive perspective — what they can and should do — rather than a negative one (what they should not do or what to avoid). In January 2015, her writing and social media efforts had garnered her professional attention and have created countless opportunities for speaking and teaching engagements around the world.
Residual side effects remain for Schwartz as the two-year anniversary of her concussion approaches. She wears sunglasses indoors due to a lingering sensitivity to light; environments like big box retail stores, with their bright lights and colorful displays, can induce headaches even with sunglasses; and traveling on the subways of New York City can stir up pain and nausea.
But nothing deters her from her mission to bridge the gap across medical disciplines to dispel the lingering misconceptions about concussions and redefine how these brain injuries are treated and managed. Positive gains have been made on that front in recent years,but there is still a long way to go. “We’re all on the same floor here,” Schwartz said. “Anyone who’s saying different is grossly undereducated. That’s why it’s so important to facilitate this team approach and collective competence in health care for this cohort of patients.”
While her experience ultimately provided insight into what’s lacking in concussion care, it also gave Schwartz the understanding of what a patient with long-term symptoms goes through. There is an internal transformation that takes place. “You learn to mourn your old self, which was a really tough process. And you learn to cope with your new abilities,” she said, “which is powerful.”