What do families need to know about continuing spinal cord injury rehabilitation services after discharge?

As far as I’m concerned, they need to know it should never stop. Whether they do it themselves at home, encourage it. A lot of the times it’s just getting the person involved in something. They may want to return to work, so refer them to the appropriate agency of rehabilitation services, and let them find them a job. They may want to go back to school. We say sometimes after you’ve been injured for a few years, you might need to go back to the rehab hospital for a tune-up. You might need to work on some different areas; it could be just physical therapy. Maybe you need some additional physical therapy because you haven’t been active enough. If you’re not going to go out and do things that you used to do which you probably still can do (you just think you can’t) stay at home and do some exercises.

The spinal cord center where I work, the belief is you don’t need any more therapy when you get home; therapy is climbing in and out of your bed and getting in and out of your chair. If your idea of rehab is to strengthen what you have in a physical sense, then go to the gym. If you live your life, and get up every morning, and have a life, and have a purpose, and have a place to go and things to do, you’re going to strengthen yourself every day by living the life that you choose. So it’s not about, “Do I need to go to therapy?” You should be finished with therapy and ready to live, and not hang-up by going to therapy every week. Now on the other hand, I’ve had clients who have hired personal trainers and they work with them six days a week and that’s great. But, you shouldn’t need any if you’re being discharged from an SCI program, you shouldn’t need any more rehab. You’re finished; it’s time to live life. Live your life—there are bumps in the road where life changes, things change you can always go back to your rehab center and therapy staff when you need to make those transitions.

You may have recommendations for ongoing therapy, so you need to know what those resources are in your community for that. But also depending on what your doctor’s recommendations are, you still have ongoing needs for posture and positioning and durable medical equipment needs as the years go on. You’re going to need another wheelchair down the road in life, and you’re going to need a physical therapist or occupational therapist to help you with those issues. Your posture and positioning needs change, your seating issues change, you may have skin issues, things like that. You need social workers to help you figure out the attendant care issues, caregiver issues, there’re life issues. So it is good to have a connection with a rehabilitation center to help you sort through that with a multidisciplinary approach to look at all of those things.