October 30, 2021
October 27, 2020 was the day they implanted me with the Medtronics epidural stimulator, and October 29, 2021 was my last session of two-hour stands in the research lab. 160 sessions or 320 hours of standing (though they made me do four more sessions so technically 328 hours) are now in the books. Starting Monday, I have about 25 different testing assessments I need to complete. These are the same testing assessments I did at the beginning of the trial and at the midpoint. These will be used to measure any changes that have occurred during the study. In other words, before and after measurements.
This past month was by far my best month for standing. Every day except one over the last three weeks, I was able to stand independently on both legs (someone was still sitting behind me lightly supporting my hips, and someone in front of me helping to support my upper body) for between 10 to 19 minutes. For three days in a row (two weeks ago) I was able to do it for more than 20 minutes with my personal best being 23 ½ minutes and an additional 8 ½ minutes of just left leg independence (the person supporting my right leg literally just had to keep a finger on it to keep it back). If I could just get my right leg to cooperate a little bit better there is definitely a chance we can get this to 30 minutes at some point. That would be pretty amazing for someone 40 years post injury and 56 years of age, if I say so myself. Needless to say, Mary and I definitely went out to celebrate last night.
Yesterday was a little bittersweet but to be quite honest, I really think standing in one place for two hours is very overrated. I’m glad that we’ve been able to get through it safely and, I think, we have helped to move the research needle. It will be interesting to see how some of the testing assessments turn out, and I will keep you in the loop.
After completing the testing assessments, I will be entering into the last phase of the study, which they refer to as “inner systems.” As mentioned several times through this diary, I was randomized to one of the two cardiovascular tracks. Again, my research protocol required me to measure my blood pressure every 15 minutes for six hours a day and adjust the intensity of the stimulation in order to maintain a healthy blood pressure, which they define as having a systolic of between 110 and 120. In addition to the six hours, I would go to the lab for my two-hour stand. Other than those two things, I was not allowed to use the stimulator for anything else. Inner systems now allows me to take advantage of the other parts of the study that I was not randomized into. Specifically, working on voluntary movement and core exercises like trunk extensions and modified sit-ups. Whether or not I can accomplish any of that is yet to be determined.
What is voluntary movement and core exercises, you ask?
Voluntary movement: At the beginning of this blog, I posted a couple videos of me being able to independently move my big toes, ankles and knees to chest. It was not graceful, but I did it. With that said, it was very challenging for me because as exciting as it was to be able to do that, I struggled with high blood pressure issues. One of the first things we are going to do in inner systems is see if we can come up with a different stimulation configuration that will help me to control blood pressure while attempting to move these various body parts. Very, very few people struggle with this issue so we have some work to do.
Core movement: This is essentially doing things like trying to sit unassisted on the edge of the mat and trying different exercises like trunk extensions and modified sit-ups. The A trunk extension is done by leaning all the way over your knees, resting your hands on the floor and then trying to sit yourself up independently back into a proper sitting position. A modified trunk extension is when one leans back about 45° and then tries to sit back up into a proper sitting position. These would be amazing things to be able to pull out. We will see.
The video above is a friend of ours who recently pulled out her first trunk extension since she was paralyzed six years ago. She is now doing this on a regular basis along with so many other exercises. Absolutely amazing.
Anyway, more to come.
7 thoughts on “The One-Year Update”
Hi Henry ,
It’s Perry and Rhonda Sounds like you are working hard as hell and making great progress . We think about you every day and love you very much .
Perry and Rhonda
Henry, I have been following you and Mary. Congratulations on this 1 year milestone! Thank you for your commitment to our SCI community and the science. Would love to get together when you get back to NY. Amazing, courageous work! Love, Deborah.
Thank you for sharing your update. You are amazing. Didn’t see beginning of blog; looked for it.
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That video was heart stopping. I cried. Continued good work henry! Going in with no expectations, look what you have achieved. The fact there is even a possibility to achieve more is a true testament to scientific research in 2021! And all those dedicated to your goals. Xo love you
Hello Henry. Great update. Thank you. Your grit and determination never ceases to amaze me, both physical and mental. And your dedication to furthering the cause of spinal cord research is without parallel. You make a difference every day.
I apologize for not making it to Louisville. I had a physical setback this fall which has kept me laying low. Long story but in summary, in mid September I had I had a kidney stone that was too big to pass and they couldn’t get it with a scope because of my enlarged prostate. They had to put in a drainage tube in the kidney which is still there. They have to address both and getting scheduled for the two procedures has been difficult. I have a procedure scheduled for this Thursday to get the stone and surgery scheduled for the 18th to reduce the size of the prostate. Long road. Look forward to getting it over.
Thanks for the update. Be well.
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Great job, Henry. Love your grit and strength. You’ve done so much in pushing us in the SCI community forward. All the best, Ron
Henry. — Thank you for the time and effort spent on keeping this blog going. During my many hours in the Sinai out patient PT gym over 25 years ago (many due to waiting for Mary, BTW), I watched a lot of patients with varying levels of injury ride a stim bicycle. My thought then, but never verbalized, was why are they giving these patients false hope? Your work has shown just how wrong I was. Thank goodness. Your guts, fortitude and progress are all truly amazing. Best of luck continuing to improve.