If you have searched on the internet, you have probably discovered that there are hundreds of websites offering advice and services related to spinal cord injury or other types of paralysis. It can be a bewildering endeavor, with lots of dead ends and conflicting information, but don’t get discouraged. Most of us who are living successfully with paralysis also started out with zero knowledge of where to turn.
Thankfully, there are strong peer support networks and professionals dedicated to helping us adjust to our new realities. The secret is to find them and take advantage of the deep knowledge base and support systems created by people who came before you.
National Resources and Support
United Spinal Association can provide you with a wide variety of paralysis-related resources through its national Resource Center. Join the organization for free and get rapid, personalized response to your questions about insurance, rehab, home modification, driving, working and more. United can also connect you with chapters and peer support groups, some of whom meet solely online — great if you live in a small town or rural area. Call 800/962-9629 or visit unitedspinal.org. Here are a few popular United Spinal links:
• United Spinal Resource Center, unitedspinal.org/spinal-cord-injury-resources
• United Spinal chapter list, unitedspinal.org/united-spinal-association-chapters
• Online support groups, tinyurl.com/yb7fosvn
• Grants, tinyurl.com/ybnsbzxw
Joining United Spinal also gets you a subscription to NEW MOBILITY, written by and for active wheelchair users. Click here for a free membership: unitedspinal.org/join-united-spinal-association/
Serving Southern California and the Rocky Mountain region are two editions of Spinal Cord Injury: The First 90 Days, by Sam Maddox. It is an excellent introduction to all things SCI with particular emphasis on getting the rehab you need and deserve. While the general info applies to any part of the country, the resources and rehab centers are curated by region. Visit scifirst90days.com.
For a directory of “model systems” — national leaders in medical research and SCI care that are known to provide the highest level of comprehensive services — visit msktc.org/sci/model-system-centers.
Addressing Ongoing Health Issues
For very specific health questions related to spinal cord injury or brain injury, try Craig Hospital’s team of dedicated nurses, available by phone Monday-Friday 9 a.m. to 6 p.m. Mountain time. Nurse Advice Line: 800/247-0257 or 303/789-8508.