I know you have not heard from me for quite some time, so wanted to check back in to give you my current update.
This past Friday was my 71st of 80 sessions over in the lab. As a reminder, a session for me counts if I do six hours of blood pressure monitoring at home and two hours of standing in the lab. For blood pressure, I take readings every 15 minutes with a Bluetooth blood pressure cuff that I control with my phone and, depending on the reading, will increase or decrease the intensity of the stimulation to keep the systolic reading between 110 and 120. The hope is that the body will adjust and understand that it works better when one’s blood pressure is in normal range.
When I stand, I do not have any contraptions around me, but instead four individuals are there to support me in an upright position while I try to tap into the energy that is coursing through my body. My goal is to direct the energy in a way that will allow me to do some of the work for these individuals. In other words, achieve independence in my trunk, hips and legs.
Here is a little video clip that my number one cheerleader, Mary, took of me this past week. It just captures a couple minutes of me standing without any support on my knees and not melting down to the ground. If you can, zoom in on my knees and you will see that the people sitting on the ground are keeping their hands a couple inches off my legs to allow me to support myself on my legs independently. To date, my personal best is close to five minutes of standing with no one supporting my legs. I also have gone for 12 minutes without support on my left leg. The remaining time while I’m standing, I need the assistance of everyone but they feel I am very light and very close. We will continue to push forward.
Energizing, exhausting, confusing, frustrating and exciting are some of the words that describe my daily routine. As I have always said, my journey will most likely be unique due to my age and 40 years post injury. I have accomplished so much but it is only human nature to want more. I do not think I have plateaued but rather am a realist who realizes my work is just beginning.
After I complete the first 80 sessions, I will repeat the testing assessments then begin the second intervention of 80 sessions which, for me, will be to repeat what I did during the first 80 sessions. For those who would like to review the design of the study again, here is a link to the clinical trial as it is listed in the NIH website.
Again, I would just like to state how lucky I am to have this opportunity. The progress that I see others making in the lab is mind blowing, and it’s a real honor to be able to observe. It’s also incredibly motivating. Just the other day I was able to watch another implanted participant do his first standing experiment. This individual who has trace sensation and movement below his level of injury was able to stand completely independently for the first time in many years. No training, just the implant. Everyone was super excited, and it was truly amazing.
I will check back in after I complete the first intervention of 80 sessions.