By Lance Stewart, Ph.D., MBA
What do Dave Duerson, Gabrielle Giffords, Zachery Lystedt, the “Afghanistan Shooter” Robert Bales, and Jackson Stewart all have in common?
They all suffered Traumatic Brain Injury (TBI).
On August 8, 2011, my family was thrust into a steep learning curve of TBI.
My son Jackson was 18 at the time, ready to start his first year at the University of Colorado Boulder. Late in the eve of August 8, Jackson was in the back seat wearing his seat belt when the car he was riding in collided sideways with a large cedar tree at ~50 mph. Jackson’s head likely went through the side window because the scratch marks on his forehead looked like an imprint of the tree bark.
Jackson was air lifted to the trauma intensive care unit (ICU) at Harborview Medical Center in Seattle (part of the University of Washington Hospital system). He was diagnosed with severe head trauma and facial fractures as shown by CT and MRI scans. He almost died on the way to Harborview.
Jackson was in coma for 20 days, and at one point he had 9 tubes in his body (2 for draining fluid from his scalp after facial reconstruction, 3 intravenous lines for fluids and antibiotics, a Trache tube for breathing, a PEG tube for feeding, a Foley catheter, and a spinal tap).
Thankfully, Jackson is having a miraculous recovery and now walks, talks, and laughs. He is getting stronger every day and is taking a full load of non-matriculated classes at the University of Washington. He is a changed man, but still has a long way to go. http://www.bainbridgereview.com/news/138260339.html
A few days after the accident, we started a blog of Jackson’s progress CaringBridge http://www.caringbridge.org/visit/jacksonstewart. The site has more than 40,000 visits. A lot of caring people, many we don’t even know, have followed Jackson’s story.
What are Jackson’s physical symptoms?
Jackson is working very hard to get stronger. He lost about 25 pounds of muscle while in the hospital. During his first day of rehab therapy, he could only pedal a hand-bike device for 60 seconds before being so exhausted he would go back to bed. He now is running 10 miles training for a half marathon and works out every day. Jackson still has issues with slurred speech (dysarthria), timid balance, and slowed executive function for recalling and organizing speech. He has 3rd Cranial Nerve palsy in his right eye, which means his eyelid is shut, pupil dilated, and he can’t move his right eye inward. Also, the optic nerve in the right eye is damaged and so he can’t really see much out of his right eye. His trache and PEG tube holes have healed nicely, but are still visible.
What is difficult in his daily life?
Jackson’s spatial memory challenges make it hard for him to get around town on his own. He relies heavily on iPhone maps and asking people for directions. Jackson needs to sleep a lot (10 to 12 hours per day) in order to feel comfortable. Thankfully, he doesn’t suffer from headaches or depression, which is common with TBI.
How has Jackson’s personality or outlook on life changed since the accident?
Jackson’s personality is totally changed. In fact, he’s really very thankful and has a tremendous positive outlook on life. He works very hard, both mentally and physically. In our estimate, Jackson has matured 10 years over the last 6 months. He’s deeply interested in physics and psychology; and at times has extremely insightful thoughts on the behavior of people and populations. In Jackson’s own words, “The old Jackson died that day.” In fact, Jackson re-learned about himself by reading his old Facebook account. He then started a new account and eventually shut down the old one. Truly, Jackson is a different person. This is not uncommon for severe TBI patients and often can shock spouses and families. We are thankfully surprised by Jackson’s change.
What do the doctors say?
A Harborview ICU Medical Center doctor remarked, “Once you have seen one TBI, you have only seen one TBI….every TBI is different.” It is very hard to predict the outcome of TBI injury. Some people with seemingly mild TBI may suffer very badly with a poor outcome, while others with severe TBI may almost fully recover. Thankfully, Jackson falls into the latter category. He recently took an 8-hour cognitive battery of tests with100s of questions and tasks at the premier University of Washington Neuro Rehab Center. Based on these test results, the doctors are planning a series of therapy recommendations. Once TBI patients recover a lot, like Jackson, they learn how to cope and “work around” issues. Sophisticated neuro rehab approaches can uncover issues and design therapies for treatment.
What is your hope for new treatments?
Each year, ~1.7 million people in the U.S. sustain a Traumatic Brain Injury (TBI), most a result of automobile accidents, crime, and sports related events. Approximately 52,000 of these TBI victims die and another ~235,000 people with “severe TBI” (sTBI) are hospitalized for extended periods of time and live with permanent deficits. The other ~1.4 million TBI cases are treated and released from the emergency room (ER), having “apparently” suffered only a mild concussion, or “mild TBI” (mTBI). For the ~1.64 million soldiers who served in Iraq and Afghanistan, ~320,000 have suffered TBIs, most in close proximity to blast explosions referred to as the “signature” wound of war (wTBI). There is a significant unmet medical need for improvements in TBI prevention, diagnosis, and treatments.
The development of medical technology for brain injury is tremendously challenging due to our lack of understanding of how the brain functions, repairs itself, suffers from disease, changes over time, etc.
Collectively, we suffer from a lack of coordination and sharing of neuroinformatics data that could contribute to the greatest healthcare improvements of our lifetime. There is tremendous opportunity to harness the combined investments of industry, academia, government, and patient advocacy in a focused game-changing approach to neuroscience.
My hope is that over the next 10 years we will see a social networked approach to discovery of new preventions, diagnoses, and treatments for TBI. Specifically, I can see a day when Pharma/biotech companies donate their chemical and device resources to academic/gov/research institution labs for full interrogation of potential utility in an open science mode of shared data. In turn, the new insights will provide enough data for smart computer systems to help guide the engineering of a new intellectual property that enables a paradigm shift in neuro-medicine. The stakes are too high for this not to happen.
Lance Stewart, Ph.D., MBA
Sr. Director of Alliances, Allen Institute for Brain Science
Lance earned his B.Sc. in Biology from McMaster University (1987), and a Ph.D. in Biochemistry and Virology from Cornell University (1992). He served as a Postdoctoral Fellow and Research Assistant Professor at the University of Washington working in the field of protein X-ray crystallography (1992-1997). In 1998, he co-founded Emerald BioStructures (Bainbridge Island, WA) and led its growth as a business unit within two publicly traded companies (MCLS and DCGN) from 2000 to 2009. He earned an Executive M.B.A. from the University of Washington’s Foster School of Business (2003). In 2009, Lance led the spin-out of Emerald BioStructures from deCODE genetics and served as the company’s CEO until 2011.
In 2012, Lance joined the Allen Institute for Brain Science as the Senior Director of Alliances. He lives on Bainbridge Island with his wife Mary-Jo and three kids Lilly (12), Max (16), and Jackson (19).