11/3
So I am feeling a significant change happening in my legs, it’s wild. I think this past week was a great chance to try to give my body a bit of a break? But also, it wasn’t because I was so dang busy in it…. Oof.
My legs right now are sensating so much. I am feeling a fullness change from tightness to warm slightly in my right leg.
So, I’m sitting here at dinner, with no shoes on, and I’m like,” wait, my feet are cold?” And then I’m like, “wait! My feet ARE cold?!” It was a really weird and interesting moment!
I’m just thinking about how there was such a long period of time that I spent without looking in a mirror. It was probably a good thing. I just. Have. Such. A. Hard. Time. It doesn’t even matter what it is sometimes, I guess. Maybe it’s just trying to do something I’ve always done. Maybe it’s trying to do an activity that everyone else is able to do (drink, for instance). It makes me feel pretty bad.
11/4
Okay. So I got a good nights rest, got all fueled up yesterday to set myself up for a good week ahead. Not often do I get to dedicate a day to get as well rested as I am today, so I am pretty happy for that!
I was talking a lot about the fullness I have been feeling in my legs, and I wanted to touch on that again! It’s real, they’re getting more full each day! I was also noticing that my legs and feet are experiencing temperatures? Maybe not always right, but there’s something going on with it?
My thighs, glutes and hips, knees, and shins are feeling more and more full! I have noticed as well my legs getting ready to do a transfer, so I can put more and more weight into them!
I also was looking into reflexes and how a baby uses them to develop their motor control, and I can’t help but notice that my muscles in my legs sometimes seem to be exhibiting signs and symptoms similar to infants? Like, they do tense up in a way that reminds me of the startle or Moro reflex, and it takes their mother/ caring embrace to relax them. This is when it gets interesting, because this has been an observation I’ve been noticing that Callie is able to help me with. When my legs tense up, especially my hamstrings, when she places her hand on them, I am able to relax? This has always perplexed me, because I never knew what was going on? Is this some magic trick that she is performing? Like why all of a sudden now are they relaxing?
This has been an interesting set of learnings and observations, because I do think that she is helping activate my parasympathetic nervous system, and that is what is helping calm my tight muscles, when they are tensed up like that? Seems odd, but something is going on with it!
There’s something to be learned from the infants and their reflexes. I am reading about the stepping reflex, and how it’s used and develops over time to become voluntary control. This reminds me of what my legs are currently working through, when I take a foot off the footplate, and when it’s unsuspended sometimes, it will try to step or pedal! Which is really cool and fascinating!
My legs are getting straighter and straighter! I am pleasantly surprised by this as well because it’s been over 8 weeks since the Botox and that’s had to been wearing off? And so I think my antagonist muscles are really kicking in!!!
Okay, time to start the week, here we go! Take care of yourself, and don’t forget the things you need to do! You only got to the gym once last week, let’s try to change that!
So, at the gym. Perfect, needed to get my body moving! Therapy went well today, did some standing in the vibration plate, and to be honest, I really did feel more through my lower legs in this session than I had the last time I was on the vibration plate! It was really cool because the feelings of vibration were so significant, it really was making the proprioception increase down there!
So I had some really fun conversations today after therapy, with my therapists, and I thought that this was really interesting! Because we were talking about the magic hands, the hands of Callie! Ha! It’s been interesting because this phenomenon has been happening for quite some time now, but I haven’t been able to do research into this until more recently, and it all linked back to reflexes in infants.
I think this is where it gets interesting, because as I was doing this research, it became more apparent to me, that all the relationships/ similarities I have with an infant are all too stark. My body really is reconfiguring and the nervous system is getting a second chance, it’s surreal.
Rose had mentioned that there might be a possibility of doing this with some sort of compression pants/ spandex material. If they are able to close tightly around my body, maybe possibly, it could help my leg muscles to relax?
I’m laying in bed, completely exhausted. My eyes are heavy. I know this is not going to end pretty for me, because I am the sleepy guy right now. I think it’s time for me to call it a day, my knees are tired, and I’m ready for some rest!
11/5
Here goes something, I woke up this morning with such an interesting feeling and thought in my head. What if I didn’t fight the “spasms” and treated them like reflexes? And let them go and do their thing? What if I didn’t try to fight them? I had that thought last night, and I think maybe I’ll try to lean into them? Seems wild but let’s see how it goes!
I’m also feeling a cool rush in my feet and toes, which is really interesting! My quads and hips feels very engaged and ready for today! I’m very excited about that! Last night while I was dreaming, I was thinking about jumping, and climbing up into second floors. I really had wanted to experience as much as I could in my mind, with the muscles that I’m thinking about needing the most help!
So I’m finally trying the idea of letting my legs relax, and “dangle” if you will, off the footplate of the chair. This has been really interesting because my legs are feeling so “different”. I use this word a lot, but they are more balanced, they are honestly kinda cool, which feels so weird and interesting right now!
Taking some time after work, and I was down on the floor, doing some of my floor routine! My legs engagement is increasing by the day, and the sensations are part of what I’m feeling to help confirm all this. So when I crawled backwards, got to the chair and started doing my tall kneeling routine. I’ve really been noticing how difficult it is to get a breath in an extended position, while I’m upright. I’m not sure exactly what that is about?
I was also noticing that me taking my feet on and off the footplate today was some of the more frequent repositioning my feet and lower legs have seen in quite some time! It felt good! It was a really interesting “woosh” feeling that they are experiencing. I want to keep this up! Getting my legs in any and all of the positions is really what I need to do!
11/6
Taking some time, to write and think. I had a pretty alright day today, and the stretching for my legs off the footplate has helped so much! I’ve really been noticing how stretching them has been helping! Also, I woke up this morning with such an increase in feeling and the tingling almost went away in my feet!! They were like warm even!! It was really cool!
My abdomen too, has been making some cool changes! He’s definitely been able to voluntarily control so much better! I’m able to pull myself forward so much more often now!
I’m doing a “side-of-the-bed” lay, with my feet dangling off. This has been hugely beneficial for helping stretch my hip flexors and abdomen, the later needing a lot of help, the left side of my abdomen is sooooo tight, it’s crazy. Trying to do anything I can to help him out!
At therapy today, my glutes and lower back were really firing, and Rose was noticing how it was twitching and really firing too! Which was cool to get that feedback from someone else! Also, I was trying to stand up in the walker, and boop the balloon and keep that fella up in the air!
Lying on my back, I’m really working to expand my abdomen, and stretch it out! My glutes and legs are really feeling engaged, and they are feeling more and more “warm”. I know how much this abdomen needs to get stretched, so I’m trying to keep up with this! It’s 9:33pm and it’s never ending!
I’m really trying to manage all of this, the activities for someone in a “regular” life, and also my activities necessary for me to live. It’s been crazy trying to manage all of this, because it really does take it all out of me each day. It wiped me out. Need to get some much needed rest.
11/7
So, I’m really feeling my legs today, and getting up and standing this morning for over an hour really helps keep the muscles elongated, and the reciprocal muscles engaged. This has been interesting because if I spend too much time in the standing frame, I get “cold”? In my legs? It’s an odd type of feeling, and it’s not super pleasant, but I need to get my legs more and more used to being up!
I also am noticing how much my posture needs work. My shoulders are fighting the rods for space, and don’t have the easiest ability to protract and depress. They are trying, and my right side is tighter, but I really feel it when I’m upright and vertical, so I need to work on this.
Just changing the things you say. Just saying you can vs you can’t makes a difference. Words are like, are like programming kinda? This was an interesting conversation John and I were exploring, and it’s a really interesting idea to have been thinking about. It really does matter what we say, and say to ourselves, most importantly!
If you don’t ever write you don’t ever get to analyze the things we are saying, it’s hard to listen to ourselves and hear what we are saying while also thinking about it at the same time. This is a where writing really helps me, and helps make sense of everything I am going through.
11/8
So this nights rest has been great. When I woke up to go to the bathroom, I was feeling some very different things! The proprioception in my right ankle! He was feeling warm and fuzzy! And now both my right and left tibialis anterior is feeling that way! Going up to my quads and inner thighs! Really significant! My hamstrings are relaxed! They’ve quieted down this morning! And then, thr most significant feeling yet, is in my glutes! They both are able to voluntarily contract so much! When I am trying to squeeze just them, I can feel my hips lift just a bit, and they are squeezing and relaxing!
I’ve been doing some very deep diaphragmatic breathing, to work my core and stretch my abdomen. They have really needed help getting loosened up, and I think it’s finally paying off!
Also, my shoulder posture. Protract. Depress. Repeat. I’ve been trying to do this more and more throughout the day, to maintain better shoulder alignment, and it’s been interesting how it’s correlated with better balance, abdominal control, and these feelings in my legs as well! Everything is connected, so it’s been nice to feel this chain of reactions!
Also! My hip flexors are feeling more relaxed and squishy! Haha. I hope that means more voluntary control!
I’m laying supine and really getting some full breaths, from the right and left side of my abdomen! This feels great! Let’s keep things going, slow down and think about your body’s positioning, and make sure you are keeping up with posture and positioning.
11/9
Every bit of activation counts. Every bit of it helps. Im laying in bed and truly feeling a lot of voluntary activation, but there’s still a decent amount of spasms I also need to work through! I’m really focusing on my breathing, working through my diaphragm and feeling my abdomen contract on the exhale, and relax on the inhale. I’m using my hands to give me additional feedback on my thighs to help me focus on extending out my legs/ contracting my quads. I need them to listen, in all orientations my body is in.
Trying to get my body to listen, relax, contract, and do this all at the right time. Let’s see how today goes!
Wow, okay. So these compression pants, these are really working! They are drastically helping improve my proprioception and the are really helping my hamstrings relax!!!
Just having days where you’re not always super motivated, and then sometimes not always getting to fit in the things you want to do can get a bit frustrating. Also, I did and we did have a busy day, with lots going on. I did sit with the astronaut pants on for almost 2hrs! Which was a really good session for getting these hamstrings stretched out.
Now that I talk about it, I did get a day where my legs got to be stretched. My hamstrings are really getting there. Just one day at a time. The compression pants had some very interesting effects today. I had increased my level of proprioception just about everywhere they were hugging my legs. And also, I could feel my hamstrings letting go a bit too, which was really cool.
I have a hard time going out in public sometimes. The times that are most difficult is when I see kids running around, without a care in the world. I remember what that was like. I remember how carefree and easy things generally were for kids. That’s when it gets hard.
I’ve really been trying to do more movements in the chair without holding onto something with my one hand. If it’s reaching for something in bathroom, the toilet release valve, my pee tubes, or even if I’m in the shower, you name it! It’s been getting better and better! It takes a lot of mindfulness and patience to try to do this, because it’s not as easy as holding onto something, and grabbing it. It takes me a couple moments to try and to get it right, but I know it’s going to be worth it in the long run!
The Astronaut on Earth 
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