“We’re the first generation of people with spinal cord injuries that have had
enough options in our lives to keep ourselves healthy,” explains Duncan Campbell, SCI BC’s Peer Support Specialist. His own experience of aging with SCI inspired him to create the Aging with SCI Program. Launched in 2024, the program explores a new topic each month, with a peer discussion group followed two weeks later by an expert-led session addressing the group’s questions.
Jocelyn Maffin, SCI BC’s Associate Director of Service Delivery shares, “We heard over and over how experienced clinicians didn’t want to be called an ‘expert’ in this area when they did a presentation because there’s so little published research or best practices available to be an expert on aging and SCI. Peer experiences are particularly powerful in situations like this, where they have this outsized ability to tell the story of what we know and what to expect and communicate to peers that they aren’t alone.”
A chance encounter in late 2023 connected Campbell and Maffin with Spinal Cord Injury Research Evidence (SCIRE) Community, who had received funding from Praxis Spinal Cord Institute to produce a video series on SCI. The SCIRE Project, co-led by Dr. Janice Eng and Dr. Robert Teasell, is an international collaboration of scientists and health professionals that gathers SCI research evidence. SCIRE Community provides free information written in everyday language with peers and the public, whereas SCIRE Professional focuses on health professionals.
Campbell recalls, “I talked to the right person at the right time. Sometimes you just get lucky because you talk to people.” He connected with Dr. Dominik Zbogar, SCIRE Community’s Research Coordinator who explains, “It became clear that aging was a topic we wanted to cover. We know what changes with age in able-bodied people. But what happens when you layer on SCI? Sometimes it’s the same thing, but sometimes it’s not.”
What followed was a fruitful collaboration resulting in four bite-sized videos on aging and pain, physical activity, bladder management, and bowel management. The team decided on topics already deemed a priority from SCI BC’s Aging with SCI survey (Your Priorities for SCI BC’s Aging with SCI Program in The Spin Winter 2023 issue). Zbogar and SCIRE Community Research Assistant Kelsey Zhao joined the Aging with SCI discussion groups to gather feedback, which helped shape the videos. Peers were recruited by both organizations to share their stories on filming day.
Zbogar says, “I set things up and the videographer took over. We had a checklist to make sure the [peer volunteers] answered the questions that we were asking. Everybody was great.” Campbell, who shared his experience with deciding to get an ostomy in the Changes in Bowel Management video adds, “Filming was a breeze.” He was accompanied by nurse Bonnie Nybo who says, “Making changes as you age is when what you’re doing right now isn’t working for you.”
But don’t take our word for it—watch the videos yourself! Head to our Aging with SCI webpage, where you’ll also find recordings of past education sessions. In the Staying Active video, peers Marni Abbott and Marney Smithies discuss barriers and benefits of staying active, with insights from adaptive fitness coach, Megan Williamson. Abbott shares, “After I retired [from wheelchair basketball], I had a really hard time being motivated to be active.”
In the Managing Pain video, GF Strong physician Dr. Andrea Townson discusses neuropathic and musculoskeletal pain and changes with age, and peer Brad Skeats explains, “My pain with age has definitely increased.” In the Taking Care of Your Bladder video, nurse Nybo describes challenges specific to men and women. Peers Dr. Arun Verma and Mary-Jo Fetterly discuss their experiences with bladder issues and solutions. Verma shares, “Since I started the indwelling [catheter], it’s made life much easier.”
Stills from the Aging with a Spinal Cord Injury video series featuring SCI BC peers (from left to right) Mary-Jo Fetterly, Brad Skeats, and Marney Smithies.
The videos were shared on SCIRE Community’s YouTube channel in October 2024. Campbell says, “Overall, I appreciated the fact that the videos were short, but informative. I asked at the last discussion group, and everybody thought they were pretty good.” Maffin adds, “We love working with the SCIRE team! Dominik and Kelsey really understood how valuable these videos would be in sharing clinical and peer experiences. They worked with us to sort through what Duncan was hearing from peers in his program and had the experience to create a really professional product.”
Zbogar agrees, “We worked well together, and we created something that we wouldn’t have been able to create without each other. I’m eager and interested in looking for the next opportunity to work together. And we were able to take some of the content that we had created for the videos and update articles on the SCIRE Community website on those same topics.” Learn more at community.scireproject.com.
What do you think of the Aging with SCI video series? Share your thoughts with Duncan at dcampbell@sci-bc.ca.
