If you spend any time in the online SDR community at all, you'll often hear the phrase:
My last 6 weeks have been a strong reminder of this, as I have entered into yet another new phase of the journey.
With the pressure of fundraising thankfully behind us, I've now been able to really focus on the exercise program required ahead of SDR. Though daily stretching and physiotherapy is a must for those with CP in order to slow down the deterioration from spasticity - this extra "prehab" component has a slightly different demand. It requires that I now also focus on exercises and movements that exclusively target CP-based weaknesses. (Think: any activity involving the feet, calves, hamstrings, glutes and hips!)
While doing this particular program won't turn me into the HULK any time soon, it does serve an important purpose. Ultimately, we want to increase the volume of exercise input to these muscle groups now, so that when the "bad" spastic sensory nerves are cut during SDR, the remaining good ones will be prepped to activate more effectively, sooner. Such neural activation is what will ultimately allow me to build up muscle and true strength in these areas of my legs for the first time (ever!) post-SDR.
It hasn't been much fun to shine a spotlight on all of the movements I really struggle with (and don't get much better at!) thanks to spasticity but I have been diligently cursing .. err... working... my way through this checklist twice each day, while being ultra-cautious to not flare up existing injuries. After finally finding a gym environment that I feel comfortable in back in December, I've also been visiting there or spending time in the pool with friends each week to improve my upper body and core strength, as I will need to rely on it heavily in my early post-op days! Since my lower body will essentially be reduced to a pile of Jello right after surgery, it's critical that the rest of me will be able to pick up the slack until my legs start to sort themselves out again, which usually takes a solid 4 weeks or so just to get back to where I am now. (Then of course, the real work will begin in the gym!) So, this is also partly why exercise is so critical in the lead-up to SDR. The time commitment for all of this has been tricky to implement, but doing it with friends has really helped to keep me feeling encouraged and on track.
I also recently picked up a vibration plate which has been strongly recommended for adult SDR patients, by Dr. Park in St. Louis. Research has shown that for those with CP, select vibration plates help to dramatically increase circulation in the legs and feet (which is often compromised from spasticity) while increasing bone density and muscle activation, too. The rapid, gentle shaking movement generated by an oscillating plate also seems to help by briefly 'numbing out' the overactive CP nervous system, which is great because this then decreases spasticity for a short window of time afterward.
After just a few weeks of trying it out, I've been amazed by how different my legs have felt in the moments after I've stepped off the plate. They are much more loose, it's easier to roll out fiery muscle knots that usually plague me with pain all night, and I seem to get a better stretch in my hamstrings. The effects only last about 20 minutes or so which might not seem like a big deal, but when you've spent your entire life feeling like a seized-up Tin Man - I assure you - such a discovery is worthy of celebration! This brief window of reprieve also gives me a glimpse into what life might feel like post-SDR which has been very, very encouraging!
Aside from swimming, exercising and shaking my way through January, I've mostly just been preoccupied with regular real-life "adulting". I started traveling again for work (rather than working from home) and the most difficult part of this transition took place during Mother Nature's latest winter wrath. Traipsing out in blizzards with -35 C temperatures to catch the bus at the crack of dawn - and then taking a long commute back home - has been trying to say the least. CP is an energy drain on its own, but when combined with painful knees and feet, gusty winds, ice everywhere, main city sidewalks and bus stops that continue to go unshovelled, and the bitter cold (which intensifies spasticity ten-fold, making it exponentially harder to move!) well...I can't help but find the timing of this change to be quite frustrating!
Being confronted with the undeniable reality that I am struggling more now in the winter than I ever have in the past, has been a heavy blow to my psyche. I used to LOVE this season. Now, I simply spend my calculated time out in it, in a panic-stricken state just praying that I get to where I need to be, without falling and getting hurt. There has been little room for 'enjoyment' and it has stung a bit...(okay, a LOT).... to see friends' social media feeds full of quotes and videos and posts and stories about how much they're enjoying this time of year. Worse still is when they temporarily have a brain fart and ask if I'm having fun in all this snow. In those moments, it takes all of my reserve to hold the tears of frustration back - and to not whack them hard on the shins with my cane - because I long to be out 'n about, and independent like I once was, rather than being holed up as an anxiety-ridden hermit for 4 solid months at a time each year. But...I keep it together, tell them to enjoy it for me, and in the meantime, I'm managing as best I can. (No one has suffered from bruised shins... yet! 😉) For now, that will have to be enough. There will soon be brighter days on my horizon, so I keep hanging onto that thought tightly, while also hoping that the worst of this Canadian winter is behind me for the season.
(I can dream, right?! lol)
So, that's largely where things are at for now. It's a grind at the moment. The days are long and I envision these next several weeks being more of the same. So if it seems quiet here lately, know that all is well. I'm just focused on getting through winter in one piece, while "putting in the work" for this latest leg of the marathon!
(Note: My experiences with the vibration plate are my own. Please ensure you do your research and consult with a knowledgeable practitioner to determine if this type of exercise will be safe for you.)