Physio has been going well. I think that I’ve reached a point where my improvements are less drastic and gradual. I remember someone told me before starting therapy that “improvements can be as insidious as progression” and I’m hearing that over and over in my head. Recovery currently is kind of like dieting? You lose lots of weight at the start, but then you have to really work to maintain it. I suppose it’s quite similar in a way because it comes down to the physical body, but then mine has the extra task of rewiring and building neurological pathways. I remember that I was bummed about my progress, but what was my deal? At 4 weeks I had made noticeable improvements, and if I was to see videos of me now vs when I started I would see a huge difference too. It’s hard to see when you’re in it. When somebody else notes changes then I say “oh yeah” and stop being so critical of myself.
There was a guy who was doing PoNS in the clinic last week who was just running on a treadmill. Like a regular human and his legs actually picked up. I said “I wish I could do that. Do you think I’ll ever get there? I want to…” My physiotherapist replied saying “Hey, we’re doing fun things too. Look you’re standing tandem and playing with these fun things! Earlier you went up the stairs unassisted.” I was using my non-dominant/trouble hand to pull these suction cup things off a table (it sounds simple compared to running but it was fun and helpful). After she said the thing about the stairs I realized that I had made progress from pulling myself up stairs at home. Stairs are back to being something I use my legs to do!
Let me see if I can make a list of stuff that’s going well:
- stairs unassisted (not always)
- I can crawl
- I can lift my leg up to put on a sock or a pant leg. The lift doesn’t last long and it’s accompanied by my entire body leaning back, but before my leg wouldn’t move at all.
- I can get up from a seated position without my knees knocking together or my whole body leaning left.
- My right knee bends more when I walk as opposed to not at all (resulting in my entire leg swinging outward)
- My claw hand is less aggressive and doesn’t form a fist with an iron grip
- I no longer flop forward when I yawn (except first thing in the morning)
- I can get into bed and lift my leg up and not need to pull it in with my hands
- I’m faster
- My physiotherapist says I have more hip control
- I can stand tandem eyes open & closed on the ground, and partial tandem on a foam block
- I can walk tandem easily using my stick to help, and I can do it easier without
- I can close my eyes in the shower and turn with them closed
- I can usually lift my right leg up & bend my knee when I’m laying down
- I can pull my foot toward me and lift my leg up when sitting (usually)
- I’m getting better at a balance position where I lunge and hold my body steady on one knee
- I can put dishes away using both hands to reach into the cupboard! Not just the left. I don’t trust my right arm with heavy plates just yet.
- I keep having days where my right leg has sore muscles! My right side is doing more to help out so I’m pumped whenever I’m sore. My brain has remembered it’s there and doesn’t let it do nothing as much.
- My fatigue has improved! I do still get knackered in the afternoon around 3 but the difference is that before that was from life. When fatigue hits now it’s after I’ve been doing PoNS on top of that. The days I actually go to physio the entire trip takes it out of me with the winter clothes and lugging things to and from.
- I’m sure there’s more that will come to me when I notice something new
Yesterday Oliver came with me to physio and he was SO CUTE. He was excited to go see where I went, we collected activities for him to do, and he got to ride in my Auntie Jan’s car. He did stuff for an hour and a half while I did physio. I’m so amazed by him and how easily he just goes with things when his plans suddenly change. We were putting our boots on and he said “Mum, I liked coming here with you.” It was so cute I love him so much. Even after that I wasn’t as fatigued as I would have been before starting therapy.