Spinal Cord Injury – Looking Back and Looking Forward

In honor of National Spinal Cord Injury Awareness Month, NARIC Director Mark Odum shares his insight on the past and future of spinal cord injury.

More than 40 years ago I broke my neck diving into and hitting my head on the bottom of an in-ground, backyard swimming pool. I was 19 years old. In the 1970s, my spinal cord injury (SCI) was considered a “sports” injury, it was #2 on the cause list behind vehicular injuries. Today, sports-related SCIs are much further down the list mostly due to better sports equipment (e.g. look at the evolution of football helmets) and better prevention education (Feet First, First Time; Heads Up Football Coaching). Vehicular-caused injuries continue to be #1, but vehicle safety improvements and better driver education mean they are not nearly as prevalent as they once were. (Learn more about the leading causes of SCI)

After my injury, I was air-lifted to one of the first university-based trauma centers. Paralyzed from the neck down, I was told that I may not walk again but they were working on a cure and it could be found within 5 years. Keep up hope but prepare for the worst. Fast forward 40 years… I still visit with newly injured patients and care teams are still delivering the same message:  there will be a cure in 5 years.

While we are still searching for a cure, the speed of medical science has been picking up and advancing research and the improvement in our quality of life. NIDILRR has been at the forefront of many efforts as far back as 1973. That’s when it established the National SCI Database that has gone on to continuously direct the collection, management, and analysis of the world’s largest and longest SCI research database. Data comes from the NIDILRR-funded SCI Model System Centers across the US, which study the impact of SCI from point of injury through rehabilitation and return to the community. Currently the database is a major activity of the NIDILRR-funded National Spinal Cord Injury Statistical Center.

Before the 1970s, there wasn’t a lot known about SCI, especially high-level injuries that affected not only movement and muscles, but entire bodily systems. Life expectancy for persons with SCI was significantly reduced, mostly because of urological or respiratory infections. Since then, many improvements in medicine, especially in the management of infections, have increased life expectancy, with many survivors living decades past their injury. The National SCI Database has been a key resource for understanding the impact of SCI, as has the Longevity After Injury Project, a long-term study funded by NIDILRR. The findings from this 45-year longitudinal study are making significant contributions to our understanding of the many changes in the lives of persons with SCI living more than 40 years post injury.

Not only are persons with SCI living longer, but seem to be living better too. NIDILRR has funded some of the more exciting and innovative research aimed at reducing barriers and increasing access for people with SCI.

The Rehabilitation Engineering Research Centers (RERCs) conduct research and development in technology to improve access, function, and participation. These include

• The RERC on Wearable Robots for Independent Living, whose projects include exploring the potential of simultaneous spinal cord stimulation to improve exoskeleton use by individuals with spinal cord injury;
• the RERC on Timing Investigation Dosage Implementation, which is training people with a spinal cord injury to use a robotic exoskeleton;
• the RERC on Physical Access and Transportation which empowers consumers, manufacturers, and service providers in the design and evaluation of accessible transportation equipment, information services, and physical environments;
• and the RERC on Technologies to Evaluate and Advance Mobility and Manipulation, whose Manual Standing Wheelchair (MSW) Project develops and evaluates a wheelchair that enables users to be mobile in a sitting or standing position utilizing an ergonomically efficient lever drive.

NIDILRR-funded research has also explored brain-computer interface technology to operate assistive devices and reanimate paralyzed hands; developing policy for accessibility and universal design at school, work, and in the community; improving prescription of wheelchairs and other mobility technology; and much more. All aimed at ensuring people with disabilities can fully participate in the community of their choosing. Visit the Program Database to learn more about current projects funded by NIDILRR.

In addition to NIDILRR-funded research, exciting research is happening across the country, from the Miami Project to Cure Paralysis to Veterans Administration research in exoskeletons and new mobility devices to research on epidural stimulation from the Reeve Paralysis Center. Visit these sites to learn more about their research, including clinical trials which may be seeking participants. These organizations also offer resources, support services, and much more to people with SCI, their families, and caregivers.

I am very excited to see what’s on the horizon for SCI research. As I meet with newly injured men and women, I still encourage them to look forward, not just to a cure, but to a long and active life.

To learn more about SCI, resources in your community, and ongoing research, please visit our Librarian’s Picks for SCI, our Knowledgebase, and these previous blog posts:

Ain’t It Cool – cool technology from the NIDILRR community

This Is All New to Me (Part I and Part II) – resources for families new to disability

Celebrating SCI Awareness Month with Research – a walk through NARIC’s collection of SCI research publications.

Contact our information specialists at 800/346-2742 or naricinfo@heitechservices.com if we can help you in locating additional information resources, research from our collection, and local and national organizations to assist.