This past weekend, as part of my new job working as an exercise therapist at Push To Walk, I went to the Working 2 Walk conference in Rockville, MD. It was put on by the organization Unite 2 Fight Paralysis. The conference included lectures and discussions with many top doctors and researchers in the spinal cord injury field, representatives from the FDA (Food and Drug Administration) and DOD (Department of Defense), as well as talks and discussions from/with many advocates from the spinal cord community, including many international advocates. If you’re wondering, the DOD was there to talk about the grants they give out to fund research, and how the DOD follows up on their grants to make sure research is actually being done.
The experience was awesome, and very eye-opening for me. I asked some questions to some of the speakers, but for the most part sat back and listened. I wanted to get a better sense of what life was like in a chair and what the spinal cord injury (SCI) community’s views towards living in a chair were. I wanted to hear the discussions between the SCI advocates and the FDA. I wanted to hear the debate among the doctors and scientists as to what the best and safest methods currently are for treating SCIs, and what things need more research in the future.
My eyes were also opened to the lack of cohesion, communication, and networking within the SCI community. However, almost all the advocates and researchers at the conference seemed to agree that events like this one were a good place to start, and discussions needed to continue. There was one overwhelming theme that everybody at the conference seemed to agree upon though – paralysis can be and needs to be CURED.
Some things I learned:
- The SCI population is a relatively new one. It wasn’t until WWII, with the invention of the right types of plastics, that people were able to live with paralysis. Up until that point, if somebody sustained a SCI, they would die within a few weeks due to a urinary tract infection. That is not so anymore. Thus it has really only been in the last 60-70 years that there has been a need for treatments and research into curing a SCI.
- It is estimated there are 12,000 new SCIs every year in the USA alone.
- The average yearly expenses for SCI patients, depending on severity of injury, range from $321,720-$985,774 in their first year, and anywhere from $39,077-$171,183 every subsequent year.
- Until recently, old fashioned ideas from the medical community have been hurting the SCI community. The idea used to be that a SCI patient’s best chance of gaining any kind of function back was in the first six months, with no chance of recovering any function beyond 2 years post-injury. Modern science and research has shown us this is NOT the case. It is possible for any paralyzed individual, no matter how severe or what level their injury, to regain at least SOME function and/or improve their health no matter when they start exercising. Every single researcher or doctor that presented at the conference, whether they were talking about exercise therapy, biomaterial implants, stem cell research, or a myriad of other topics, had the same belief; PARALYSIS CAN BE CURED.
A woman with an SCI riding a FES Bike, which uses electrodes to directly stimulate the muscles of the legs, allowing her to maintain muscle mass and keep the nerves below her injury level alive. With machines like this, she has hope of recovering some function in her legs. What else can be done for SCI patients? The more questions we ask and attempt to answer, the sooner we'll find out.