I’m creating this site to memorialize my journey as a research participant in a study based on decades of work on spinal cord injuries. I’ve been in a wheelchair for 38 years, and during that time I have established deep relationships with many people within the research community. It has been an amazing experience to watch this field go from the graveyard of neuroresearch to one of the most promising today. This is a field that is now being converted from the traditional philanthropic support model to one that is attracting investable assets.
So, what am I doing? I have volunteered for a 36-patient, FDA-approved randomized study where I will be having an epidural stimulator, also known as a spinal cord stimulator, implanted directly onto my spinal cord at the bottom of my thoracic spine.
In some ways, I’ve been preparing for this for most of my adult life. But more recently, in 2013, I began meeting with a team in Louisville in order to participate in various assessments. The team, along with the lead investigator, Susie Harkema, whom I’ve known for decades, have been focused on this research for about as long as I’ve been paralyzed. They have worked with approximately 30 other patients since the first, Rob Summers, was implanted in 2011. I am now and, more importantly, they are now ready for me to begin a pretty intensive commitment.
It’s not so much getting the stimulator as knowing what to do with it! Once I am implanted and recovered, they will try to use different stimulation patterns to create various desired responses in my body such as normal blood pressure (on a good day my blood pressure is 90/50), and improvement in bodily function such as thermal regulation, and bowel, bladder and sexual function. In addition, and more visible, they hope to provide me with the opportunity to move lower extremities voluntarily and even possibly stand independently while a harness supports my upper body. I do feel it is incredibly groundbreaking and possibly life extending.
I have been asked many times why I am volunteering. It is not as if I am chasing something that I lost 38 years ago. I came to terms with paralysis long ago, which allowed me to move forward and have a 30-year career on Wall Street and develop the most wonderful relationships, the most important one being my wife, Mary. It has been the support of our collective communities that has allowed this field to get to a point where we can make a difference in people’s lives. They’ve put much effort and monies into these endeavors throughout the years, and now it’s not only time to put my money where my mouth is but add in my entire body. I hope to get through it without any major mishaps, and if I experience meaningful gains, that would be incredible gravy!
I am by far the furthest out from injury than anyone else they have worked with, but they understand it is not how long you been injured, rather it is how healthy your body is before going into a study like this. Everyone is different. They know to base their recruitment more on the health of the individual as opposed to just number of years post injury.
Well, it is going to be an interesting journey! I’ve attached this PDF describing the study in pretty gritty detail. If it gets too boring, I will try to bring you along by submitting journal entries when there is something significant to share. You can also watch this TED Talk with Claudia Angeli, one of the Principal Investigators of this study.
Thank you all for your unbelievable support of this cause and of my family throughout all these decades. I’m hoping to come back to you with exciting news.