The lab reopened this past week, and I continued with testing my voluntary movement configuration as well as a couple more baseline assessments. After this next week, they should be set to begin my routine of eight hours of stimulation a day, which will also entail two hours of standing at the lab.
Some highlights and low lights of the past week:
On Monday, January 4, I began back in the lab to attempt another voluntary movement configuration check. In other words, while laying on my back, the PI (Principal Investigator) turns up the stimulator to a level where I possibly could tap into the neural circuitry that allows me to independently and voluntarily move my toe and ankle, and bring my knee to my chest. Of course, the goal is to be able to voluntarily move while my blood pressure stays within a safe range. They began my week with this particular session because they wanted to see if the two weeks of stimulation that I did over the break was helping my body to adapt and recognize the stimulation as a friend and not foe. The results were better, but not completely where I need it to be. The PI was able to raise the amplitude to a level just below where I needed it in order to achieve the movements. The plan is to continue to stimulate through the week and try again this next Monday.
During the rest of the week, I completed a few other baseline assessments, and then the PIs began working on coming up with a combination of electrodes to fire, which would allow my body to assist with standing when put in an upright position. We had two sessions, and they were pretty happy with the results. As you can see in the pictures, they do not use any contraptions to stand me up but rather the rehab techs support my knees, hips and upper body. They are giving me words of encouragement as I attempt to fire the proper muscles that would assist them to help me to stay upright. In addition, Mary has been there all the time coaching me through. Awesome!
The PIs were very happy with what they saw, and the amazing techs, who were helping me to stay upright, felt they were able to decrease their incredible efforts when I was able to tap into activating my muscles. The pictures show them assisting me to stand and the 5 people who are holding my 6’3” body upright. It looks easy, but I can assure you, it’s not. All the things all over my body are muscle and motion analysis sensors. There are 8 people involved in this experiment, and the process involved about an hour plus of preparation before we began the standing experiment. We ended the session after 45 minutes of standing.
On another note, I thought I would share some personal observations about my body. Some of the greatest challenges faced by people with spinal cord injuries are not as visual and as obvious as the physical paralysis leading to the use of a wheelchair or other mobility devices. Overall, I believe, people adapt pretty quickly to the need to use a mobility device but it can take a much longer period of time to get one’s body back in balance when it comes to managing a neurogenic bowel, bladder and other autonomic functions. Once it seem like it’s figured out, you age another 10 years and the challenges are back. For the bowel, people usually address the situation by introducing a combination of laxatives, fiber, suppositories and other medications that no one really enjoys taking. As many of you know, this has always been one of my greatest challenges. I bring this up because after using the stimulator for six hours a day for the past few weeks, I think I find my body reacting differently to the medications that I’ve used for years. Over the decades, I have had to increase the amount of medication and, frankly, spend a much greater duration of time in the bathroom. Once done, I always hope my body calms down and behaves until the next prescheduled routine. I feel as if some of that might be starting to change. That’s a real positive on one hand and a great challenge on the other. The goal is to be one with your body and find that balance. You introduce a new stimulus to your body like the stimulator, and you need to begin all over again to find that balance. All good things but additional challenges nonetheless. Ideally, I hope to reduce the Senakot and still produce good results. Anyway, this is probably TMI, but it’s real life.
Onto the next week!
7 thoughts on “New Year, New Challenges – bring it on!”
FANTASTIC WORK, Henry and Mary!!! It gave me shivers to see you standing upright.
Don’t worry about TMI, you are not the first Stifel I’ve spoken to about bowel movements.
It is all so interesting and the best part is that you are making progress!!!
Hi Henry, I hope you and Mary are well.
I love reading your updates – they’re incredibly Inspiring and compelling. Keep at it and know that I’m rooting for you.
Hi Henry! Hi Mary! I am enjoying learning from your blog. No worries about tmi, I am so appreciative of truth. There are struggles we confront daily that are much larger than using a wheelchair for mobility. I look forward to following your quest and seeing where it leads you. Much love, Deborah
Looking good my friend
Think about you and Mary every day !
Love You ,
Perry and Rhonda
Absolutely love the update. I am extremely hopeful with the more time the stimulator is in, you will have better reactions and your body will see it as a friend!
While making the adjustments will be challenging, seeing the positives that are already coming will make all of them worthwhile.
Keep kicking butt, Henry!!
Yes to forward moving bowels, Henry! As always inspired and grateful for your many insights especially “That’s a real positive on one hand and a great challenge on the other. The goal is to be one with your body and find that balance.” ONE WITH YOUR BODY…it’s happening thanks to your courageous efforts, an amazing team (including my sister-in-law) and keeping your focus on a positive outcome. Love you so much.
Henry, you are my spirit animal!