The Burden is on YOU

As a reader of this series you have seen this phrase a lot. I probably shouldn’t refer to it as a burden because it is more of a responsibility. As with any personal health effort like recovering from cancer, overcoming post-traumatic stress or battling diabetes, at some point you need to do the heavy lifting. There is only so much modern medicine can do. Therapists, doctors, surgeons, engineers are all members of the team and they can only do so much. Earlier one of the other research participants said to me prior to surgery, “you just need to get yourself in the right mindset.” At some point, you need to push the limits of what your body can achieve. And burden seems to be the pointed word to describe that.

With that said, at this point, I need a little help from the research team. After being released to begin exercising, I got to a point of standing with the new IST-16 receiver. They were not long stands, clocking in at only 2 minutes compared to my typical 20 minutes prior to the failure last summer. Needless to say, I needed a little tuning and that was the goal of the latest trip to Cleveland.

This visit to the laboratory was focused on tweaking the system to get the best performance. It is not a shot in the dark. This research is all about analytics to guide the system performance and a little magic too. First in order was testing the electrodes of the quadricep muscles. We learned from prior experience, that if you stimulate the muscles with all the electrical juice we have it doesn’t always lead to the best performance. When I first stood with the cuff electrodes, we turned on all the contacts and my stand time was only a few seconds. Why? It was fatigue. A muscle is a fickle mass of tissue. Finding the right balance of strength and endurance fibers can lead to better performance.

Coming into the lab with only a 2-minute stand, we knew we could do better. On day one of a multiday visit to the lab, hours were spent on the Biodex machine testing the contacts of the cuff electrodes on each femoral nerve that stimulate the quadriceps muscle. Yes, I have 24 channels in the system, but the six (four from the cuff electrodes and 2 from the original epimysial electrodes) in the quads play an integral role in the sit to stand process and the duration of standing. The testing is laborious being strapped into a seat and feeling the different combinations of stimulation but that testing will soon pay off.

While the engineer is crunching the numbers from the quad testing, we turned to the rest of the system. Labeled as profiling, an engineer and the physical therapist test each channel and muscle for response and thresholds. One by one we go through the other channels to find that perfect setting to use for later. But it is much like tuning an orchestra. One instrument might work well but it all hinges on combination of instruments to make the music.

One new instrument we needed to tune were the new cuff electrodes stimulating the tibialis anterior and the gastrocnemius. We started with the left side, the stronger side. At one point the stimulation created such a hard muscle contraction is felt like a Charley Horse. They turned down the stimulation and it went away while leaving a nice lifting and pointing of the left foot. The right side — also the weaker side — had the same testing. The right foot pointed and flexed off the ground. The stimulation can make the foot overcome gravity which is exciting but, it needs to be strengthened. What is more impressive, was the PT tried using surface stimulation to get a muscle contraction from the right tibialis anterior and there was no response. But when we stimulated the same muscle using the implanted cuff electrodes, we did get a response! It is a true display of the technology using implanted electrodes.

It’s not all about standing, over the course of three days we tested a variety of things in and out of the laboratory. They are testing other functions that the system could provide for people living with spinal cord injury and paralysis. It could be for wheeling in the outside world, transfers, reaching or balance. They test different types of equipment and different setting all pointing toward improved function. And that is why lab-time is sacred. We never seem to have enough of it. What happens in those experiments will be for another publication, most-likely scientific and peer-reviewed.

With the numbers crunched and all the channels tested, they now set the system parameters from the earlier tests. Like clockwork, my standing time improved and I was able to stand for 10 minutes! It wasn’t the 20 minutes that I had a year ago, but it was a good start. With the new system and the new settings, I’m sent home to exercise, build strength, work on endurance and use the system in daily life. To this, I’m now Jen 3.0 and the burden is on me to use it.

This ends this journey of getting the newly implanted neural prosthesis. It wouldn’t be possible without the dedicated research team and the funding agencies who believe in the vision. My personal participation would not be possible without support from my husband, Tim, and my Mom, who spends hours in the lab and miles in transport. We look forward to seeing what 3.0 can do.



True experience as a participant in a clinical trial involving an implanted neural prosthesis for paralysis.

Get the Medium app

A button that says 'Download on the App Store', and if clicked it will lead you to the iOS App store
A button that says 'Get it on, Google Play', and if clicked it will lead you to the Google Play store