In the United States alone, 795,000 strokes occur each year with 75% of these patients experiencing their first stroke. Even more startling, over a third of annual strokes occur in individuals under the age of 65—indicating that strokes are not a disease of the elderly like so many people believe. Similar to Parkinson’s Disease, traumatic brain injury (TBI), and other acquired brain injuries, the insult from strokes can cause a wide range of diverse, and often debilitating symptoms. Without proper resources and care, these symptoms can become a permanent challenge for patients—with serious implications for their quality of life.
Kelly Campbell, an assistant principal, and special education teacher in Atlanta, Georgia, suffered an ischemic stroke only two weeks after her 40th birthday. With a normal blood pressure, a healthy heart, and no risk factors for stroke, Campbell was among those most surprised to find herself in the acquired brain injury community. Like so many others, she quickly realized the sizable gaps in care and resources available to her. “We’re overlooked by politicians, we’re overlooked by lobbyists and laws, we’re even overlooked by hospitals…we have a hospital system here in Atlanta that won’t even support our cause,” reported Campbell.
In addition to her unprecedented journey, Campbell’s advocacy work for brain injury survivors sheds light on the often invisible challenges surrounding the condition. “It’s not a sexy disease,” says Campbell, “there are no celebrities wearing ribbons for us or anything like that.” Unlike other ailments, brain injuries lack a definitive endpoint. Campbell thinks this is part of the reason the topic eludes public conversation. Unlike cancer or heart disease, which “either ends tragically or triumphantly,” brain injuries bring with them lingering, lifelong disabilities. The disheartening stigma around brain injuries only worsens the silence. In Campbell’s experience, many people perceive brain injuries to come at the fault of the individual—particularly with strokes. “They don’t want to be told that I did nothing. If I was perfectly healthy and it happened to me, it can happen to them,” comments Campbell.
With an amalgamation of factors barring brain injury survivors from appropriate attention and resources, patients and caregivers are often left to navigate their own, complex recoveries. Campbell, whose stroke caused mobility impairments, considers herself “one of the lucky ones” because she presents with a visible disability–which helps her utilize crucial resources. Her seamless enrollment in social security benefits and access to top-tier medical facilities juxtaposes the experience of so many others. Fortunately, Campbell leverages her bountiful resources and willingness to “try anything once” to help others like herself discover what does and does not work to heal a brain.
“Negativity is ineffective…that’s a big one” posits Campbell, who refers not only to unsympathetic family members or friends but also doctors:
“I have fired doctors who have told me things that have not been good. It’s not that I refuse to accept bad news… It’s when I knew something was wrong and I was told repeatedly by doctors that it was ‘all in my head.’”
As survivors struggle with challenges unperceivable to those around them, attitudes like this cause them to feel like a burden to their peers and community. Campbell stresses that succumbing to this mindset is detrimental—emphasizing the damage to one’s perceived self-worth and endurance for self-advocacy. She goes on to describe a brain injury phenomenon called “the three to one ratio,” in which brain injury survivors expend three times the energy an uninjured person would on the same task. With challenges like this compounding an already unreceptive public, it becomes clear why so many brain injury survivors are pushed explicitly or implicitly to the sideline.
Tools for Recovery
Campbell’s narrative exemplifies the hardships faced by survivors, but also the resources and tools which make navigating the arduous journey easier. First and foremost, she prioritizes self-resilience, seeking second opinions, and a willingness to try new things: “It’s okay to say ‘no’ to a medical professional; It’s okay to seek out somebody new; it’s okay to ask for a second opinion.” Campbell knows not all brain injury survivors have the same experience and resources she does. For this reason, she also highlights the habits which have helped her—and can help others—at home. At the top of her list was the Power of Patients Dashboard.
“Every time I get a headache, especially if I can’t shake it, I’m gonna panic,” shared Campbell, and she’s not alone. Many brain injury survivors experience an array of symptoms, some of which they may not initially associate with their brain injury. Nonetheless, all symptoms can cause stress and discomfort. It wasn’t until Campbell started tracking her symptoms and triggers on the Dashboard that she began to understand her unique condition. For her headaches, in particular, Campbell learned increases in barometric pressure (the force of the atmosphere pushing down) were to blame. “We’re being drowned here in the South by hurricane after hurricane after hurricane,” comments Campbell, “going back and being able to see [my data from that time period]…that’s fabulous.”
Why Use the Power of Patients Dashboard
While the individual benefits of using the Dashboard are clear to Campbell, she thinks there are broader benefits to using the platform as well. The majority of brain injury research comes from sports. What research does occur outside of sports often fails to address the personal needs of brain injury survivors—catering to other agendas instead. “For me, Power of Patients is helping to bridge the gap between what’s important to [brain injury survivors] and what’s important to researchers,” states Campbell. As brain injury survivors register for the Dashboard and track their symptoms and triggers, the platform collects brain injury data from a plethora of real patients. The result: information to guide clinical studies in addressing the true needs of patients—and better outcomes for everyone.
The Power of Patients Dashboard isn’t the only at-home tip Campbell has to share. She also stresses the benefits that arise from support groups. In these networks, Campbell describes the way in which brain injury survivors can share their experiences to the benefit of others and themselves. Campbell has observed that brain injury survivors are rarely told what to expect as a result of their injury—and even less about how to deal with the symptoms. Like the Dashboard, support groups bridge this gap in information and allow patients to learn from others and access novel resources. “Less than one-tenth [of brain injury survivors] find a support group”—a disheartening statistic that fuels Campbell’s endorsement of virtual communities like these.
Campbell showcases that brain injury survivors are not hopeless, are not invisible, and are not alone in their brain injury recovery—offering a handful of tips to help patients manifest this reality for themselves. Among Campbell’s top points are to advocate for yourself, ask for second opinions, avoid negativity, join support groups, and leverage novel resources like the Power of Patients Dashboard. Kelly Campbell shares her story to empower brain injury survivors everywhere to take control of their condition. So what are you waiting for? It’s time to recover.
Learn more about TBIs and other acquired brain injuries at www.powerofpatients.com.