In the last issue of The Spin, we introduced you to Duncan Campbell and the Aging with SCI peer support program he is developing. In that article, Duncan invited you to participate in a survey about aging with SCI. We checked in with Duncan to find out what many of you told us, and how your input is shaping our Aging with SCI program.
The overwhelming response to the survey clearly indicates that aging with SCI is a topic of great interest and concern. Within a week of opening the survey, 117 people had completed the survey and by the time the survey was closed, 132 surveys had been completed. In the world of SCI surveys, this is a remarkable response.
We sent out this survey to all SCI BC peers who are 40 years or older and shared the survey link in our newsletter and The Spin. The vast majority of responses came from older peers who are more than fifteen years post injury, and who use a wheelchair. Understandably, most (56 percent) responses came from peers who were already of retirement age. However, with 40 percent of responses coming from peers 50- 59 years of age, we expect that this project is of interest to younger peers who may already be starting to experience early issues related to aging with an SCI.
Here’s what we learned:
Three of the top five topics felt to be the most relevant to aging with SCI were related to health issues. Bowel and bladder issues were identified as the highest priority topics, with shoulder and pain issues coming in at number three and four, respectively.
“I thought that these common SCI complications had probably been addressed enough in the past, but as we get older we experience a lot of changes that prompt us to review how we manage these systems— including learning about new options available that could help address these changes,” says Campbell.
Physical activity and fitness was the second priority, which resonates for Campbell, “I am a firm believer that exercise and activity are important parts of healthy living, and that not everyone has the knowledge and opportunities available to be active. The Aging with SCI program will share guidelines around how much exercise is enough to provide benefits, and options for getting more in your routine.”
Care options rounded out the top five priorities. As we age, there is an increasing likelihood that we’ll need home care support and many of us have not planned for the costs that can be associated with it. Accessing and advocating for home care supports is on our list for the Aging with SCI program to address.
While financial concerns were in the middle of the priority topics identified, the comments revealed a range of very different financial situations aging peers are dealing with. “It is pretty clear that as a person with a disability ages there are many, many financial implications, some to maintain our health, some to maintain our independence, and many of these are not covered or supported in any way. The variety of financial situations will need a few sessions to discuss, as well as ways to advocate for better support,” says Campbell.
Campbell acknowledges that many comments said all of the topics were important, noting that the rankings have given us a better idea of where to start.
“This project will have its own page on the SCI BC website featuring Ask an Expert and Aging with SCI videos, SCI BC resources, as well as links to external resources and research articles. We are also developing a calendar of sessions starting in January that will be available on the Aging webpage after each session,” says Campbell. Education-related sessions will include professional experts and peers, which were important components to the majority of survey respondents.
Campbell is very pleased and appreciative of the response to the survey, “I want to, again, thank all of you who did the survey. The results have definitely helped to set priorities for development of this program.” As the Aging with SCI program continues to be developed, here’s what is happening next: Two online sessions per month will start in January, with the first two being:
- an Aging with SCI Education Session series with clinician and peer experts and a Q&A.
- an Aging Discussion Group to discuss and share information and support around aging with SCI.
Keep your eyes open for the launch of the Aging with SCI webpage to collect videos and links to important resources from SCI BC and elsewhere.
This article originally appeared in the Winter 2023 issue of The Spin. Read more stories from this issue, including:
- Adaptive gaming
- A new treatment for male infertility
- Peers’ evacuation experiences
And more!
