Pacing Your Recovery
It’s been almost nine years since Rob Staffen was in an accident that would change his life forever. Staffen was cycling down a mountain near Palm Springs, California in October 2012 when suddenly his road bike malfunctioned, catapulting him head-first into the rock-strewn desert landscape. The impact to his skull resulted in a traumatic brain injury.
A concussion is a brain injury caused by a hit to the head or body that forces the brain to move back and forth inside the skull. Known as an invisible injury, a concussion can affect a person’s physical, mental, behavioral and/or emotional health. While 80 percent of people recover from a concussion, 20 percent have persistent symptoms that can develop or worsen over time. Too often after a concussion people either stop activity all together, delaying recovery or push themselves, doing too much too quickly, intensifying their concussion symptoms.
To combat this, Becky Moran, an occupational therapist with St. Joseph’s Acquired Brain Injury (ABI) Outpatient and Outreach Program at Parkwood Institute developed the Pacing and Planning Program, a points system to help concussion patients track, manage and pace their daily activity. The system, much like points tracking used by dieters to monitor food choices, assigns values to tasks like driving, grocery shopping, screen use and exercise so patients can be active enough without overdoing it. Each person is given a total number of points per day that will keep their symptoms in the “safe range” and are encouraged to increase their points as their recovery progresses.
The Pacing and Planning Program has helped hundreds of St. Joseph’s rehabilitation patients achieve their recovery goals. And now, thanks to funding made possible by the Cowan Foundation and other community supporters through St. Joseph's Health Care Foundation, the Pacing and Planning Program has evolved into a web-based app - MyBrainPacer™.
Rob credits the lessons he learned as a patient at St. Joseph’s with helping him get his life back on track.
“Without the team at St. Joseph’s Parkwood Institute, I’m pretty sure I wouldn’t be where I am today,” he says. “The tools they provided helped me balance my life, so I can stay active but keep my symptoms under control by resting when I need to. With their guidance, I was able to return to work and resuming my passion for road biking. I’m not totally recovered, but I can do the things I love—I just have to know my limits, which is perfectly OK.”
MyBrainPacer™ was co-designed by ABI patients and their caregivers, integrating technology and health care expertise into one easy-to-use tool. The app helps users safely monitor and track their daily activity and concussion symptoms using a smartphone, tablet, or personal computer.
Developing the app required strong partnerships and a dedicated project team of St. Joseph’s researchers, therapists, IT experts, patients and donors. “In 2015, we recognized the great potential of the work being done by St. Joseph’s Health Care Foundation in London and the Parkwood Institute around reducing symptoms for those experiencing post-concussion syndrome,” explained Mary D’Alton, Executive Director, The Cowan Foundation. “We are pleased to extend our support for the second phase of this ground-breaking project.”
“Made possible by innovation, research, and collaboration, this app has the potential to significantly impact those living with a brain injury or concussion.” Says Heather McLachlin, President, Cowan Insurance Group. “We are proud to support this project since this app is a great tool to empower those struggling to continue their daily activities and will provide a clearer path to recovery. This tool will not discriminate on who it can help, the broad reach of this tool to various audiences is one of its greatest assets.”
Launched February 1, MyBrainPacer™ is part of a toolkit of resources St. Joseph’s ABI team has created to help concussion patients self-manage their condition. The resources also include a series of Concussion Care videos (see below), an audio playlist of mindfulness exercises and tools to aid recovery for common concussion symptoms like visual disturbances, noise sensitivity and balance issues.
Concussion patient advocate shares her experience to help others
Jill Wright is using her background in creating educational resources to help other brain concussion survivors through a new Concussion Care video series
A few years ago, Jill Wright's life was turned upside down in an instant. She had a lot on her mind, juggling a busy work schedule, shuttling her daughters to after school practices and preparing for the grand opening of her family's espresso bar. It was during one particularly hectic evening that she accidentally hit her head on the kitchen counter and the impact resulted in a traumatic brain injury.
Jill's injury was so severe that she wasn't able to work or even perform routine tasks like grocery shopping. She felt overwhelmed and experienced one challenge after another seeking out the rehabilitative care she so desperately needed.
It wasn’t until she was referred to the Acquired Brain Injury Program (ABI Program) at St. Joseph's Parkwood Institute that Jill was able to learn the skills she needed to get her life back on track. Having the right information gave Jill a clear path on how to move forward with her rehabilitation. She credits the care and expertise she received at Parkwood Institute for her recovery.
Jill is now using her experience and background in creating educational resources to help other brain injury/concussion survivors through a new Concussion Care video series produced with the help of clinicians at St. Joseph's. Using the London Community Foundation's Making A Difference family fund, Jill created these videos geared to improving access to concussion care resources for people needing or awaiting guidance from health care professionals. The videos include tips and evidenced-based resources from St. Joseph’s ABI Program team and testimonials of lived experience from patients.
ABI patient educational toolkit
The ABI patient educational toolkit launched by St. Joseph's empowers patients to pace and plan their recovery from an acquired brain injury. The toolkit, which includes the MyBrainPacer app, Concussion Care videos and a Mindfulness podcast series, is designed for people to use at home. Save and share this page—it could help you or someone you love.