In June The Walk On Foundation held the first ever Cornhole For A Cause fundraiser in Louisville. Here, with help from many people, we were able to net and donate over $10K to benefit spinal cord injury research at KSCIRC. While I had hoped to raise a lot more money, it was successful for the first one, especially in a city you are not from and have pretty limited connections in. Trying to connect people to the world of spinal cord injuries and why they should care is a challenge. I am not surprised by this, as I knew nothing about it until I got injured. Connecting people to it is something I hope to continue to get better at it and can only help me increase my impact by raising money and awareness.
I have been working at KSCIRC in the finance department for over a year now and I must say that I am in a pretty good work situation. I get to work for a group that is working to make the lives of people with spinal cord injuries better and it also just so happens to be in the same building where I work out and am involved in research studies. I cannot say enough about my department supervisor and team; they have been great to work with and for. They have been extremely understanding and accommodating to my somewhat odd schedule that is full of workouts, research assessments as well as medical appointments. They also tolerate my bad jokes and constant sarcasm, maybe even enjoying some of it.
Several months ago, I FINALLY got involved in my first ever true research study. For the last 5 months I have been doing standing with electrical stimulation, which means I do assisted standing with neuromuscular electrical stimulation (NMES) all over my legs. I have two people help me lock my knees, as well as a bungee strap and person supporting my hips as we stand. We do about an hour of various exercises, including standing, weight shifts and assisted squats. The NMES sends electrical currents to contract or fire the corresponding muscles for each activity. We are looking at how this affects muscle and bone health, which are both negatively impacted once you become paralyzed. This is usually something I arrive to do every weekday about 7:45 am before work. While this study may not be that exciting and does wear on my upper body, I appreciate the opportunity of getting treatment at no cost and also even feel a slight sense of accomplishment finally being in a study. I am advocating being in one for about 9 years now, but until now; I have been excluded from them. My hope is that this will possibly lead me to some better opportunities.
It is no secret that research consisting of an epidural implant is what led me to Louisville. It has been just about 10 years since KSCIRC implanted the first patient here and he was able to stand up and moves once paralyzed muscles as well as recover or improve lost body functions. As some of you may have seen in recent news, this work has progressed:
https://www.cnn.com/2018/09/24/health/paralyzed-woman-walks-again/index.html
As you can see from the story and video, the work here has been progressing. We now have had a patient that was able to recover independent walking. While it is not that smoothest or prettiest walk, it is a big sign of progress made and hopefully things to come. This was a patient that prior to getting this implant had no motor function or movement below their injury level. While in the past, there have been several other implanted participants to recover standing and movements or functions, this outcome of patients stepping independently are new and exciting. This is something that is occurring or takes place in the building where I am most of the day throughout the week. I have known to some degree about the success here sooner than the press release, but had to keep that to myself due to confidentiality agreements. For months, I would even see the patient featured in the link above will take steps in or outside Frazier Rehab and have the occasional conversation with her about how things were progressing.
I know that some of you saw this news, once it hit various sources, I got a few texts or emails asking me why are you not doing this or when will you do it? The short answer is, I really do not know. I do know that I am seeking an opportunity like that for about 9 years now, but have not been able to break through or convince someone to give me one. While this would be frustrating to anyone, I admit that it frustrates me a little bit more since I have seen and met others that have gotten to do it, as well as trying to raise money to help advance things on top of even working where it is happening. While I am happy that there are people working on this and for the people that have gotten it, make no doubt about it that I want and even think I deserve a shot.
Right now the type of injury I didn't fit their inclusion or exclusion criteria and while I do think that eventually my type of injury will get a shot, again I have no idea of the timeline. I have learned over the years how painstaking slow medical research can move in most cases. Before I came to Louisville, I had never worked at or been this involved in a research facility at a university and while I work with a lot of well-educated and smart people, it is just a much different world or mindset than anything I have ever been a part of. There are a lot rules or regulations and red tape that slow things down; while there are a lot of factors for why this is the case, sometimes I find it very hard to understand. Getting a medical device from research to clinic is not easy; it is an expensive and long process. You have to work closely with several regulatory agencies like the FDA, device manufacturers, research participants and staff, journal publications, a budget as well as other groups I am either leaving out or maybe not even aware of.
While research plays a big role in figuring things out or what does or does not work and how to make things better, I believe that ultimately it is usually up to a private company to take something to market or to the clinic to make the lives of people that want or need it better. In this case we are talking about a medical device company, like Medtronics or Boston Scientific, etc. Like most companies, they are mostly driven by profit, so showing that there is money to be made, is the most likely way I think that this treatment ever becomes a reality. While KSCIRC has been a leader in this research, I have been pleased to see that other groups are doing this as well, we have a couple of groups in Minnesota replicating the research and even putting their own spin on it, as well as a group out of Sweden. While it is good to see other groups are doing it, the reality is there have been less than 30 patients implanted in a decade. Since, I have been told this needs to show that it works effectively and safely in hundreds of patients to get this close to coming to market, so we have a long ways to go, so the more the better.
I admit that I am in an interesting situation these days and my thoughts are a bit all over the place. I know that once I woke up from a coma in the hospital in Charlotte and realized what was going on, I was quick to ask my father what we were going to do about it. He even told me I asked him this as I pointed to my legs. Since my accident, I have been up and down the east coast to meet with researchers and get treatment at various places all in the name of recovery. I have been to Baltimore, Rutgers, Atlanta, Miami and now Louisville. While I may be overly simplified things, it is hard not to think about how there is a device out there that in its current state has been able to significantly improve the quality of life for hundreds of thousands of people in the United States and millions throughout the world and unless you are fortunate enough to get in a study, you cannot have it. Also that while this device is being used in an off-label or different manner than it was intended for, it is based off of technology that has been implanted safely in people for back pain for about 30 years. So in theory, that should help expedite the process. I understand that they want to and maybe think they even need to make the device's technology better, but I think to myself, why can’t they just take what they have now and get it to help people that want it so badly, all while simultaneously working making a better version. That is what we see with tons of consumer products like, such as cars or smart phones.
I have mentioned numerous times how a spinal cord injury can potentially impact every system, muscle and body function, we have, including the body’s ability to regulate body temperature. That means someone might often or always be too hot or cold and in a constant state of uncomfortableness. I mention this because I have a friend that is paralyzed from the chest down once tell me that if he could fix or correct anything from his injury that body temperature regulation would be it. Think about that, someone who cannot stand or walk or even have full use of their hands or arm muscles would choose fix that. That is one of the secondary issues that this implant corrects or vastly improves, so that one benefit would make his life significantly better but he cannot have it. I find this to be extremely frustrating for him and for countless others.
December 14th marks my 10 year anniversary of my accident. It is still very hard to believe that it has been that long. While I think I have done a decent job of handling things or making the best of it, I have always had my moments where I question if the path or direction I have taken has been the best, or what ultimately will come from it. I find myself having a lot more of these moments lately. I see a lot of advocacy or support groups using slogans such as “my disability does not define me” and while I understand the mindset that they have and that they do not want to labeled or want people to see that they are more to them than their physical limitations or a wheelchair. However, for me, I fully recognize that my injury has and continues to impact pretty much every aspect of my life. This has been mostly all my decision, but it has impacted where I have lived, where I have worked, finances, social interaction, relationships and how I spend the majority of my time. While I am tired, I am not planning on giving up because that is just not me, but admit that it can be challenging to stick with. In some ways I feel I am so close, I am in the building where people are getting implanted and making gains or improving their lives to advance the cause, I also work for and am even on the same floor of researcher that has and continue to lead these efforts. I am trying to remain confident that I will eventually get a shot here, but also recognizes that maybe I need to be open to that fact that it might not come together until there is superior technology or maybe I will get my shot in a different location or even end up being some treatment I do not even know about yet.
Until then I plan to continue working to stay in decent shape and ready for my chance as well as continuing to use my foundation to help the overall cause. I also need to focus more on just how fortunate that I am. I am not a fan of the saying it could be worse, but I know that it can, I have met a lot of people on this recovery journey that have it worse and would love to have the physical abilities that I do. I am able to work and live on my own and take care of the majority of things myself. I have also been fortunate to have the support from friends and family to help me get to this point and not everybody has that. I still hope that it will all come together, hopefully sooner than later for the spinal cord injury community.
Very frustrating! Your diligence and perseverance are an inspiration Brian. Still cheering you on from the sidelines!
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