Thursday, January 14 began my first official day in the trial. All of the work over the past few months essentially has been the preparation necessary to allow me to begin the study. As a reminder, a total of 36 participants will complete 1 of 4 randomized tracks (Groups A through D). Whatever daily activity we are randomized to, we will need to complete 80 daily sessions over 2 time periods. In other words, after I complete my first 80 sessions, I will need to repeat all the baseline assessments as a point of comparison and then, continue on my next 80 sessions. After the second 80 sessions are complete, I will repeat the baseline assessments and then the study is finished.
I have been randomized into Group B, which is one of two cardiovascular tracks. Essentially, I turn on the stimulator for 8 hours a day, of which 2 of those hours will be while I am standing. During these eight hours, I use two different electrical stimulation configurations: one to assist me with maintaining a healthy blood pressure (done at home) and the other to help me try to stand independently (while in the Lab).
For blood pressure, I use the stimulator for six hours and adjust the intensity of the stimulation to maintain a consistent and healthy blood pressure (a systolic range of 110 to 120). In other words, continue to do what I have been doing since the beginning of the winter break back in late December.
The other configuration is designed to assist me with trying to stand independently every day for two hours. As you can see in my previous entry, while the stimulator is on it takes a number of people to keep me upright. The goal during these two hours is for me to try to tap into the neural network and try to extend my legs, flex my quads, gluts and anything else I can find that would assist the incredible techs to keep me upright. A completed session is put in the books only if I manage to complete two hours of cumulative standing. Hopefully, I will do that daily (obviously with the help of the techs). My goal is to learn how to activate those muscles and increase their strength and endurance and decrease the tech’s assistance.
Once again, here is the link to the actual design study if you’re interested. It will provide you with what the other three groups of individuals need to complete for their 160 sessions.
To date, I have completed 6 sessions. We have had challenging sessions and some better than others. During the two hours, I definitely can trigger some decent activation in my legs and back muscles, but they tire quickly and I am only able to maintain their added support for a short duration. It’s a start.
A couple photos to share. If you compare them with the photos in my previous post, you can see a little bit of progress. My best session to date was this past Wednesday where, on a cumulative basis, I was able to support my upper body for 10+ minutes. In the previous post, two people have their hands on my upper body. In these photos, no hands on my upper body and, despite my Santa Claus belly, I think I look pretty straight. If I am leaning back too far, the techs will not allow the timer to begin. That is why I have a couple mirrors surrounding me. We all use them to try to help me stand with proper posture.
Every day I go into the lab I witness amazing things. I have the benefit of overlapping with four other people. They’re all younger than me, are less years out from their initial injury date, and have lower level injuries. Two of them seem to stand with decent ease with the assistance of only two people. I hear their techs calling out and timing on the computers when they are not actively assisting the individual to stand and they are doing it independently. The other two individuals are in a completely different study and are learning to take steps again. It is truly inspiring to watch how hard they all are working. Amazing stuff! For me, as I have said all along, my journey will be completely unique and my end results might be minimal but, it will not be due to lack of effort.
I have a long road to travel and will continue to give you periodic updates.
2 thoughts on “Making progress”
Keep up your amazing hard work!, we are with you all the way!
That’s awesome news Henry!! I have a feeling you will be only extending your personal records of unassisted standing quickly and will continue to amaze us with your progress!!
Keep up the phenomenal work!