New tool shows promise in helping people manage traumatic brain injuries once pace at a time

Mild traumatic brain injuries (mTBI), including concussions, may come with lasting effects that can alter a person’s life.  Although a person with a mTBI may appear fine on the outside, many have to pace their day-to-day activities in order to allow the time needed for the brain to properly heal. 

For 42-year-old Cindy Vanderveen who lives with post-concussion syndrome, every day tasks can become quite a challenge. Cindy who had multiple concussions over the years, experienced her mTBI symptoms in July of 2020 after an intense workout. Not knowing what was happening, she assumed she was having a stroke or seizure. 

“I had issues with my vision; everything looked distorted. I had problems speaking (aphasia) and couldn’t eat or drink without choking on my food,” explains Cindy. “Everything I used to enjoy doing, gardening, cycling, working, it just stopped and my entire life was put on hold.”

Cindy was referred to the Acquired Brain Injury (ABI) program at St. Joseph’s Health Care London where she was encouraged to try a new research tool called MyBrainPacer™App, created to help those living with an mTBI.

The app was created at Lawson Health Research Institute – the institute of St. Joseph’s Health Care London – a team looking to better assist and treat those living with a mTBI. It was made possible by funding provided by the Cowan Foundation and other community supporters through St. Joseph’s Health Care Foundation. 

“By documenting activity levels over time, patients and their clinicians can better understand what activities are linked to worsening symptoms, which they can therefore avoid,” explains Dr. Dalton Wolfe, Lawson Scientist.

The online application is part of a study which allows Dr. Wolfe and his team to track the efficacy of the app. Much like point tracking used by dieters to monitor food choices, through MyBrainPacer™ App, users can assign values to tasks like driving, grocery shopping, screen use and exercise so they can plan and pace their daily activity. Individual users are given a total number of points per day that will keep their persisting symptoms in the ‘safe range’. As users track their symptoms through the app, the app adjusts the daily point value to what is best for the user. The app is based on St. Joseph’s Pacing and Planning Program, which has helped hundreds of concussion patients achieve their recovery goals. 

“By putting the app in the hands of patients and the clinicians who treat them, the app has the potential to give us data that traces the recovery patterns of patients and how that relates to the activities that they participate in over time,” adds Dr. Wolfe. “This will enable us to document safe levels of activity for persons with specific characteristics or symptom profiles, which could be the key to unravelling better treatment strategies.” 

After using the app for some time, Cindy has noticed a positive change. “In the beginning I wasn’t able to drive farther than five minutes at a time,” remembers Cindy. “Once I began to use the app to plan and track my activities, my symptoms dramatically decreased.”

Currently anyone with a mTBI can enroll as a study participant on the MyBrainPacer™ App and use the tool. The research team is hoping to enroll approximately five-thousand users over time to allow for a large evaluation population.

“Without the app, there is no way to keep track of the hundreds of trajectories of patient recoveries,” says Dr. Wolfe. “This information is vital to understand what is working in terms of future therapeutic approaches.” 

“I still have bad days, and some tasks are harder than others,” adds Cindy. “But through using the MyBrainPacer™ App I am able to do more activities independently and I’m 90 per cent back to who I was.”

Anyone interested in enrolling to use the app can do so by visiting mybrainpacer.ca