It is hard to fathom that I have been at the in-patient rehab almost a week at this point. Time is simultaneously flying and standing still. It is a very interesting concept, the passage of time when you don’t have a daily work routine, but you still do have a routine.
The first day was filled with all of the evals, where I am at, what I can and cannot feel, what I can try to do for myself and what I still need assistance with. Once again, I am blessed that I still have full use, function, and strength of my upper body. My PT used a term today “monoplegic” which is paralyzed in one limb (can be upper or lower). My right leg this week has woken up considerably, and although I have some feeling problems on the top and the side of my foot, in general my right leg is doing what I ask it to do at least 80% of the time, if it is a little slow to respond. My left leg continues to be a toddler or ornery teenager. I cannot tell where it is in space, I cannot control where it goes well, when I stand on it, it buckles, and when I go through walking motions it does not do what it needs for efficient walking. PT is encouraging me to walk, and I can walk, but I need a walker, a person holding me, and a wheelchair following behind in case I get tired/unstable. I was able to walk about 80 feet in one go today doing this.
Stairs are a whole different ballgame. The motion going up is not bad, as I have one good leg to go up with, but coming down, because I have no concept of where my foot is, it feels like I am jumping off a bridge. They are planning on putting me in a training harness to work on gait next week, so that will be a new experience.
The big thing that happened late this week is that I am now allowed to be independent with toileting! This is a huge independence step because I do not have to call a PCA to use the restroom. I have learned enough wheelchair skills to get myself in and out of bed, in and out of the recliner, and for toileting using the wheelchair. I still have to call the PCA if I want to do it walking. I am becoming a master of using pivot turns to get in and out of Mathilda (she is steadfast in her service) and I feel safe doing them as well. Being semi-independent like this means that I can work on better feeling when I have to go to the bathroom, though I’ve been keeping myself on a schedule. Let’s just say the dirty little secret of spinal cord injuries is that almost all people with one have bladder and bowel issues. This is the case for me- I cannot feel when it is time to go. I am able to go on my own once on a toilet, but I am keeping myself on a schedule like a 2 year old, I’ve had zero urges.
I’m an advanced student in arm class, using a 5 lb weight for everything, I do have to build my upper body strength, as I will be relying on it much more long term. Everytime I transition into Mathilda, I have to give myself a good push with my arms, or a good pull on a grab bar, it helps with the momentum.
I will post more about this for sure, but my wonderful lead PT, Kylie, told me today I should be getting a visit from the wheelchair fit specialists early this coming week, as while everyone hopes I won’t be a full time and/or permanent wheelchair user for mobility, the reality of spinal cord injuries is you just don’t know. They do know I need a custom chair, that I can maneuver in and out of a car myself, and be independent with. Like most things I have turned to the internet for even trying to know where to start, and luckily there are several folks with spinal cord injuries that are active on youtube and are at least giving me ideas on things I need to think about when I start this wheelchair process.