After the long drive back from the US (13 hours over 2 days in the car) and the Easter weekend break, I knew I had lost about 2 weeks of the post-SDR progress we had made mobility-wise in St. Louis. The regression was real and FAST! This was expected and not a cause for concern since things would catch up again once I was back into a daily therapy routine - but it definitely caught my attention, for sure.
The first session back at home with my team on Tuesday was amazing. It was so, so cool to see the reactions from my therapists, to the changes I came back with after SDR. They were pleased, intrigued and surprised by so many things I had yet to realize. Simple but impactful things, like:
-Realizing I could now lay on my back or my stomach for stretching, without issue. For the last year this had been completely off limits (for sleep, too!) as it would flare my SI joint so badly that I wouldn't be able to walk afterward, for days at a time. Now though? No problem! This meant that so many different muscles could now start to be properly stretched out again which is hugely important (and it just feels surreal and heavenly, too)!
-We can now stretch and isolate other muscles for the first time, ever --AND I can feel those individual muscles, also for the first time in my life (Hello, hip flexors --nice to finally meet you!! lol)
-Seeing that the stretches were effective AND long-lasting. (Pre-SDR, I'd be tight, uncomfortable and in pain again just minutes later, so this too? SO big!)
-Seeing the increased range of motion that I have in my lower body - how they could move me with ease now vs. feeling like we were both engaged in a wrestling match with my legs!
In all, their excitement and curiosity was special to witness - and the "A-Ha! moments" we shared in that first appointment were too many to list here. They saw what I've felt: significant, positive, undeniable change. Above all else too, they saw that with spasticity removed - the potential for improvement is absolutely real. With each discovery, I couldn't help but smile. All over again, I was reminded that SDR was the right decision in this moment, and for my future.
We discussed the plan given to us by Dr. Park's team for the next few months, and from there, got to work. As each day has gone on, I've resumed making progress. Although on Tuesday, I was back to having a death-grip with the walker -- by Thursday, things started to click again and we were back to having me walk, with a cane (while being supported). I was happy and content with that progress, and still figured it'd be several more weeks before I'd be able to walk on my own indoors with the cane.
Something shifted on Friday morning though. I can't really describe what I felt but movement just seemed easier when I got up in the morning. I wasn't sure if or how long this would last, so we just ran...errr...walked.... with this at PT while we could.
After my usual time on the treadmill and some of the standard exercises we'd been doing, it was time to practice walking with the cane again. I wasn't expecting this to go any differently than it had the previous day....but it did. Quite quickly, I sensed that the level of support being given to me was now too much, and that it was pushing me too far forward when I'd go to take a step. I asked if we could let up on this a bit, and from there, my legs remembered what to do from our last session in St. Louis. We walked up and down a part of the gym a few times, and soon, that was a wrap on the session.
While I waited a bit for a ride home, (and the coast was clear of therapists who, for the sake of safety, might want to put a stop to my secret mission ...lol...) I decided to try practicing by myself with the cane. I just knew that something had clicked and didn't want to lose it. Soon, I had things down pat on my own....didn't need a wall for support, and for the *FIRST TIME SINCE SDR*, didn't need someone holding me up! (See ya later, gait belt !!).
At 5 weeks post-op to the day, I had my independent steps back again with the cane - just as the PTs in St. Louis had predicted would happen. Mind you, this is in a super safe, controlled, indoor environment that I know very well --but still --this is HUGE progress because I was walking ON. MY. OWN!! And I couldn't stop smiling. For an hour --with breaks in between -- I walked around the clinic, trying to reinforce what had clicked. (This is a lot of walking for me, as we've only been doing 12 minutes at a time, to build endurance.) We snapped a quick video so I could send it happily to the therapists I worked with in STL to share the good news, and then I headed home.
I watched that video back several times this morning. Partly because I want to be sure it actually happened and I wasn't dreaming - and partly because I wanted to relive the moment.
SDR recovery and rehab is no joke, especially for adults. My legs feel obnoxiously heavy and super numb most of the time --especially in the morning (this will fade as healing continues, and as my baby leg muscles start to wake up and get stronger). It takes a crazy amount of energy just to get the basics done each morning. By the time I've got dressed, made breakfast and put my shoes on -- its time for a nap, because the effort required to make these legs move is significant. So, yesterday was big - not just for my movement, but my for spirits, too.
To the untrained eye - my walking looks the exact same as it did prior to March 22nd. But when I watch that video back each time, here's what I see and feel:
-I'm more upright - and not nearly as crouched down, and hunched forward when walking (a.k.a. It's really nice to actually be able to breathe when I walk, rather than having to stop every few steps to get air! Who knew this happens for everyone else, ordinarily! lol)
-I'm not leading my steps with my neck - and my neck and shoulders aren't on fire from straining so much after a few minutes of walking --like they would've been before.
-My left hand that's got a hold of the cane isn't clenched tight, hasn't gone numb like before...and it wasn't numb or painful after the hour of walking, either. For 8 years, this was another spasticity-related nemesis of mine. And, just like that, thanks to SDR, it's gone. So too are the daily headaches and weekly migraines that came with it. I've been 100% free of both for 5 weeks plus a day. Surreal.
- I can now pick up my feet when I step (confidently with the left...we're working it, with the right) rather than slamming my feet toes-first into the ground, praying I don't fall on my face.
-There are also now traces of a semi-consistent, controlled heal-toe walking pattern in the making (with my left foot at least!). I can feel what it's like to roll off that left heel, and shift my weight onto the right to move forward...like they've been prompting me to do down in St. Louis. It may not look fluid yet - but it sure feels like that to me!
-My knees and feet don't hurt indescribably when I walk. No video can ever capture that magic - but it's there in spades!
-I feel relaxed in my body when I walk....not stiff as a board. This alone is reason to want to jump for joy. (As soon as I figure out how to jump, you can bet I will!)
There are SO many parts of that video where something big and meaningful stands out to me, when reflecting back. If I listed them all here --you'd be reading for much longer! So, I'll wrap things up simply by saying that I'm grateful we captured it, in a place that is so dear to me.
I don't know what next week will hold with these crazy legs. Each day really seems to bring its own new set of surprises at the moment and every single one of them truly fills me with awe. Yesterday was so, so special....and I won't ever take moments like those for granted. 💚🎉