An app is supporting people who have sustained mild traumatic brain injury (mTBI) or concussion in managing its ongoing impact on their lives.
The MyBrainPacer App has been created to help survivors monitor activities and help gauge tolerance for them post-mTBI.
Likened to points tracking used by dieters to monitor food choices, users of the app 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.
“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.
“Without the app, there is no way to keep track of the hundreds of trajectories of patient recoveries.
“This information is vital to understand what is working in terms of future therapeutic approaches.
“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.
“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.”
The app was created in response to the need for support with mTBI and its ongoing effects. Although a person with a mTBI may appear to have recovered, 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, everyday tasks can become quite a challenge.
Having sustained a number of concussions over the years, Cindy 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 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 online application is part of a study which allows Dr Wolfe and his team to track the efficacy of the app.
The app is based on St. Joseph’s Pacing and Planning Program, which has helped hundreds of concussion patients achieve their recovery goals.
After using the app for some time, Cindy has noticed a positive change.
“In the beginning I wasn’t able to drive further 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.
“I still have bad days, and some tasks are harder than others, 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.”
Currently anyone with a mTBI can enrol as a study participant on the MyBrainPacer App and use the tool.
The research team is hoping to enrol around 5,000 users over time to allow for a large evaluation population.
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