It’s been a while since I’ve written any sort of progress report and I have so much flying around my mind that I’ve been meaning to get out. So here goes nothing.
I’ll start with a straight progress update. To give you a frame of reference for those who don’t remember or may not have fully understood; my injury was originally classified as C6 complete. That means I damaged my spinal cord at the 6th vertebrae down on my neck and no nerve signals are able to pass that point. My muscle function stopped at wrist extension or the ability to bring the back of my hand up towards my bicep. If that’s not enough, take a look at this dermatome distribution chart (http://tlccrx.com/wp-content/uploads/2013/11/Dermatome-Chart.pdf). I originally could only control the muscles within the colored region from C1 to C6. Since then I have progressed from a complete to incomplete status and now signals are making it past my injury. Along with this I have gained a considerable amount of muscle function back. On my left side I have progressed to the functionality of a T1 injury (check the chart) and can now control my tricep, pectoral muscle, and a small amount of my hand. I only have minor finger extension in my hand and still rely on the passive grip from my wrist extension called tenodesis (https://en.wikipedia.org/wiki/Tenodesis_grasp). On my right side I have progressed to a C7 functionality and have regained a considerable amount of tricep muscle. My right chest muscle is slowly coming back as well. I also feel that I am gaining back a bit of my core and back muscles that are essential to keeping my balance and sitting upright. There is no order to what muscles I regain and this is just the beginning of my progress. I feel I’ll make huge gains in due time. I am learning that much of the muscles that I have lost that I am slowly gaining back that previously acted involuntarily I now have to think about to use. You all sit upright and hopefully maintain a good posture due to your back and core muscles. But just like breathing you only think about voluntarily activating these muscles a few times a day. For me I now have to focus directly on my back and core muscles in order to effectively make use of them. Hopefully much of it will become passive again in the future but this is what I’m dealing with now.
From here we can now talk about the rest of my body that is supposedly “paralyzed.” I’m going to say this now and probably again at the end, anything I say about my injury and the progress and changes I’m experiencing are unique to me and in no way represent any other spinal cord injury. So, although about 80% of my body is “paralyzed,” what it does and how it feels is in no way correctly represented by the definition of paralysis. Starting with sensation, I can still ‘feel’ many parts of my body including my lower back, a few spots along my thighs, my ankles, toes, and the bottoms of my feet. I can only relate the type of sensation I feel in a way you might understand by comparing it to the fuzz you feel when touching a limb that has fallen asleep. However it fluctuates in intensity and location but I think my total sensation is slowly increasing. As for my muscle function, all of the muscles that I don’t have direct control of are still firing. I deal with a heavy amount of muscle tone which is a variant of uncontrollable muscle spasms but instead of spastic shaking my muscles contract to full strength. For example, when I lay down my quads and calf muscles all contract to lock my leg hard straight and my torso contracts tensing my entire back and abs. Once laying for a bit the muscles will relax but are at the ready to contract just as hard again if there is even the slightest movement or sensation on my body even down to the light touch of a blanket falling over my legs. When sitting my muscles continue to contract to the slightest movement but my quads instead pull my legs in under my chair and my back and core muscles contract to become rigid and prevent me from leaning over. All of this continued uncontrollable muscle function comes with its own set of pros and cons.
The positives include prevention of muscle atrophy as they are all still in use and the ability for me to still utilize my muscles in an indirect way. For starters when I’m sitting in my chair the contraction in my back and chest keep me sitting upright and prevent me from falling over. They do eventually relax so I can lean down to reach the floor when needed but having the rigidity helps a lot with balance and keeping me up right. When I’m lying in bed I’m able to use the core contractions by pulling up with my biceps under my hips which raises my chest slightly, thus engaging the core contraction and sitting me up in bed. This has made getting up from a laying position 100 times easier as before it involved a lot rolling around, hooking and pulling with my wrist and bicep on my legs and pushing off of the bed with my arm and shoulder muscles.
The negatives associated with the muscle tone are very rarely seen by other people until they directly help me move my body. When I attempt to move my legs around in any situation, whether in bed to move around, reposition to transfer or even move them slightly on my foot plate the muscles in my legs contract and prohibit me from doing so. At some points it’s as if my legs each weigh 100 lbs. On top of that the constant contractions cause my tendons to become very tight and although I stretch every day I’m only maintaining the slight amount of flexibility I have. I take muscle relaxing medication to help combat some of the tone but it’s a tough balance between not becoming too drowsy from the meds and keeping my tone at useful but not detrimental level. As I said in the beginning I’m speaking only for myself and what anybody else with a spinal cord injury has to deal with varies substantially from my situation.
Now onto the not so cool stuff. I had a pretty serious ingrown toenail the other week. I say had because now I don’t have a nail at all. Yeah I was that bad. And to make matters worse it’s infected. Not only can I feel the pain of the infection through very uncomfortable nerve pain but any pain below my level of injury sends my muscle tone through the roof. So the fine balance I just talked about is out the window. My legs will not give me a break. The icing on the cake is that wounds below my level of injury heal exceptionally slow due to the lack of blood flow. Something like five days for every one day a normally functioning body heals. So it’ll be a while.
Besides that though things are going great. As long as I keep moving in the right direction I can afford a few detours. Oh and one last thing. Ideas, so many ideas. By that I mean inventions I guess. I’m constantly thinking of devices to make that either help with an immediate task or may ultimately help give me more mobility. I’m putting some more simple ones into physical form here and there and the more complex ones I’ll get around to once I’m back at WPI. I’m going to need all the help I can get for a few of the more farfetched ones. But that’s what makes it fun. And now I’m my own test subject so I can see lots of electrode placement in my future.
Anyways, remember to keep improving yourself. If you have the ability to make some part of you better or do more with your day, cherish that. Use it as motivation and know you’re never as good as you can be at anything.