6 Months Post-SDR: Wild, Wobbly & On My Way!
When was the last time you were truly happy to take the trash out on Garbage Day?
Have you ever actually looked forward to this chore with excitement? If your answer is a hearty "No!", then I'm right there with you.
Well...at least I was...until 3 weeks ago, today.
Let me rewind for a sec. In the rush to get out the door that morning, my roommate didn't have time to take our bins out to the curb. He's normally on-point with this so it was no bother to me, to take care it for us this time through.
Rocking cat-themed pajamas (don't judge...you know you've all done the "Garbage Day Shuffle" in questionable comfy clothes before!) I hurriedly gathered up what needed to go out, and began getting it down the front steps. Once outside though, my nonchalance turned to dread as reality set in: I hadn't been on garbage duty since pre-SDR and to get those bins down the driveway, I would need BOTH hands.
As in: I wouldn't have a free hand available, to use my cane.
Outside. On pavement.
While walking. And carrying things. At the same time. (??!!)
Further complicating matters was the fact that until now, the only post-SDR walking I had been progressively working on was *indoors*, and even still those cane-free steps were with wall support or a hand to hold, so they were nowhere near consistent enough to count on, yet.
Since I couldn't leave the bins outside til the following week (we have an enthusiastic army of raccoons and possums nearby that would happily tear everything to shreds at night!)...and that I was also down to just minutes to get this stuff on the curb, there was no time to call in neighbourly help. So for better or worse, I left the cane behind and anxiously started to shuffle each container down the driveway. The garbage bin itself wasn't too challenging as there was a handle to balance against and wheels that I could use to roll ahead few steps at a time, to help me out. When it came to the recycling boxes though, there was no such support available. I'd need to pick these up and walk with them, or risk spilling their contents everywhere. I was less than optimistic this would end well!
Yet, to my surprise, when I bent down to pick up the first one up with two hands - bringing it to waist height - my body knew on it's own to shift my weight back just slightly, so I could stand balanced and upright. And from there? My feet just started tentatively picking themselves up as they shakily walked me down the path - with weight back on my heels as needed, cane-free!
(Those steps weren't smooth. And I'm certain I was constantly just fractions of a millimeter away from catching the toes of my right foot on the ground, which would've resulted in a massive wipeout had my toes made contact. But before long? Mission accomplished!)
Cue my bewildered disbelief!!!!!
Recognizing from past experience that something magical might have "clicked", I knew I needed to reinforce it in the moment before it was lost. So, I picked up our empty mini kitchen recycling box with both hands, and began doing laps around my driveway.
Looking back, it's laughably absurd to picture myself decked out in PJs, hanging onto a blue box while wandering around outside with glee! But that's exactly what I did for about 10 mins that morning. With each lap, my solo steps felt a little easier, a little lighter, a little more dependable. And they truly came out of the blue.
Unfortunately, however, my excitement was short-lived.
The next day, those outdoor independent steps were nowhere to be found, and I went right back to needing my cane in all environments. My body wasn't ready to take that next-level leap for good. But it had given me some key clues, and a sneak peek into the future. Apparently, this is exactly what I needed.
At physio the next morning, I recounted my Garbage Day adventure and mentioned to my therapist that I could sense it was time to ramp up the indoor cane-free walking. Instinctively, I also knew I needed something more to help me pick up my rogue right foot. I racked my brain, trying to think of what we could do other than treadmill walking, to simulate a fluid motion that would cue my leg to lift and provide consistent foot clearance.
Soon, we had an idea: one-legged stationary cycling!
(Weird and random though it sounds, it was our best shot. Since my left knee remains painful and problematic - but can't be addressed til my return to St. Louis in October - it needed to be left out of the equation.)
Before long, we had rigged up our experiment. With my foot heavily strapped onto the pedal, and electrical stimulation (e-stim) pads on my hamstring and front of my shin --used to give extra neural input to these muscles that are (so!) slow to come out of hibernation -- I started attempting to cycle. That first day, we tried for a solid 40 minutes to pedal the damn bike. Right Leg wasn't interested in the slightest! 😂
The next morning, we tried again and though awkward and laboured, it protested slightly less. By day 3? Fluid, continuous motion was a thing! (Though my knee flopped all over the place with every revolution.)
By Monday of the following week though, "Righty" got the memo for good! With a bit of new found control at the hip and knee, my ankle and foot began to move more typically, pulling the toes up just a smidge more, when needed. And as the week moved along this continued to improve. Resistance was added to the bike and soon, my left leg also began to disassociate from the motion of the right which was a neat surprise! (With CP, my legs always want to copy what the other is doing. Only after SDR, have I started to figure out how to make some of that patterning stop.)
Off of the bike, we continued targeting the right leg with e-stim and strength-based work.
And by the following Friday - just one week after 'magic garbage day' - cane-free walking was tentatively happening at NHRC... for the first time EVER in my 6 years there as a patient. 🎉🎉🎉
By now, of course you know I happy cried.
So for another week, we kept to the plan: cycle with e-stim til my right leg falls off 😉... weight train it in isolation, and then see if those solo steps would stick. Eventually, they did - sortakinda, almost. (Those first trial and error days were wild and wobbly; I was like Bambi on the loose back there in the gym!)
This past Monday at PT, we then upped the difficulty by creating a mini-obstacle course to navigate, so that I could start to rein in these crazy legs. It's been neat to experience. Through this new challenge, I've begun to uncover how to slow down or speed up mid-walk when needed, which is another first... and I'm learning to rely less on momentum - and more on control - for movement. (These things sounds easy, but they're not!)
Which brings me to today...
Just a few hours ago (and 3 weeks after I got that first glimpse at leaving my cane behind)...INDOOR INDEPENDENT WALKING BECAME A REALITY that I can now count on quite consistently, at physiotherapy!
With a more upright posture than I ever knew before SDR, I weaved through a set of cones, stepped up onto and off of a platform while in motion AND navigated different surfaces with relative ease - several times continuously in a loop, without falling once!
Conquering that obstacle course with nothing but my own spasticity-free legs - that have now become strong enough to hold me up! - was BIG, and meaningful beyond measure. So much work went into making this happen. The months of strengthening. The months of regaining sensation in my lower body. The months of discovering *how* to relax my muscles during movement, so that my legs could feel light enough to be picked up at all. The hundreds of hours spent learning to sense where my body is in space. Continuing to learn how to turn down the tone that remains from CP that still makes movement so hard, that I didn't know I'd still have to contend with after SDR...
In light of it all...you couldn't have wiped the grin off my face if you tried! Yet, what got me most, was looking across the room at one point. First, at my therapist who has been by my side since well before SDR...who has seen the ups and downs that weren't highlight worthy...who I couldn't imagine doing this without. Then, slightly to the right, as I caught a glimpse of my cane tucked away in the farthest corner by the door. Realizing that there it could sit...there it could now stay while in the clinic... because we no longer need it! Whoa!
Six months out...
Of all the blogs I imagined writing to mark this significant time point in the process...
Of all the lovely ways I hoped to regal finally being able to walk indoors there without the cane (because it took so damn long to acquire that skill relative to my SDR adult peers)...
Of all of the resources and tactics I envisioned my therapists and I using as THE tool that would eventually propel me to this point...
I never, ever anticipated that Garbage Day and a pair of recycling bins would be the connecting piece... or the launching pad to this part of my story. How unpredictably, ridiculously odd!
But maybe that's my lesson to be learned in this latest season of the journey.
Maybe I don't need to search for the glamorous moments or grand stories, in order to signify that progress *IS* progress!
Maybe I needed the reminder that there is magic waiting to be discovered in the ordinary. In the messy tasks that aren't always fun. In the weird and random "everyday" that can't be planned for.
(Or...maybe I just needed a really strange symbol to get nostalgic about - that will now make me laugh every time I see it - as I move along in the months to come?)
Either way...if in the future, you see me smiling at a recycling bin like a weirdo, or are confused by my excitement for garbage day, just go with it.
After 6 months of work, and hundreds of hours spent in the gym since March, that grin has been well-earned!
(And hey...by the way...Outdoor Solo Walking -- look out. It might take a while, but I'm coming for you, next! 😊)