Kofi Annan once said, “Knowledge is power. Information is liberating. Education is the promise of progress, in every society, in every family.” When it comes to spinal cord injuries, we know this to be true from our own experiences. Yet at the same time, another quote comes to mind, this one from John Naisbitt. “We are drowning in information but starved for knowledge.” Never were these quotes more real than when I was first injured.
After you are injured, things happen quickly. Feeling totally out of my element, I went along with whatever doctors suggested, as you probably did as well. One morning they told me they were taking me to “Big Baylor” where I would receive a colostomy and suprapubic catheter. Okay I thought, they must know what they are doing. One day, they came in and told me I needed to decide where I would have rehab. I didn’t even realize I needed rehab! That kicked off frenzied research for my family. A few days later, a well-dressed, nice looking woman came in to give me a pitch for a local rehabilitation hospital. She described all the helpful therapies they had there, including pool therapy. They were local and listed in U.S. News & World Report and covered by my insurance. Based on that, we went there. My toes never dipped into the pool.
As I gained experience in my new world, I learned how true the above quotes are, and when I started my foundation, I decided to do something about it. I set up a links section which consists of 13 categories of information encompassing close to 200 websites. Categories range from sites that have national and state resources to others ranging from transportation to mental health. When you are living with a condition such as a spinal cord injury, you have to be your own best advocate, and that requires that you be informed. The link to this information is https://www.josephgrohfoundation.org/.
One of the websites we point people toward is the Christopher and Dana Reeve website. They recently published the fifth edition of their Paralysis Resource Guide. If you are not familiar with it, you need to check it out. They go into the basics of 19 different conditions, including of course, spinal court injuries. It also covers health management for a range of issues from autonomic dysreflexia to DVTs, respiratory health, aging with a condition and many others. In all, there are 10 chapters in the guide, which is 216 pages long. You can find it athttps://www.christopherreeve.org/living-with-paralysis/free-resources-and-downloads/paralysis-resource-guide.
This brings to mind a quote from Claude Shannon, who once said, “Information is the resolution of uncertainty.” If you are unfamiliar with either source of information described above, you now have your homework assignment.
Noticeably absent when we all left rehab was the instruction manual for dealing with the myriad of situations we would find ourselves in.Ask This Old Quad articles serve to fill in that vacuum, because we have all developed tricks of the trade that we believe would be valuable for others.Share your ideas and experience with us atinfo@northtexasusa.org