Video Update – Parallel Bars Walking

I’ve been using the parallel bars for quite some time now and just a few days ago I had a relatively small but significant breakthrough that I wanted to share. The following video (from March 1st) shows a great development in my walking exercises and reminds me that progress does occur, even when it doesn’t feel like it. As you watch, please keep the following things in mind:

  • Don’t be confused and think this is the big thing: I’m not walking on my own….YET. It’s hard to see but the therapist is holding my core steady with the strap around my waist and she’s also using her leg to lock out my plant knee because I can’t do that yet. That said, it’s still pretty cool.
  • I recently started doing this exercise without shoes because I can slide my feet with socks. Maybe it’s cheating a bit but it’s helped me initiate the movement from my hips and actually pull my leg through with more strength.
  • Previously, the therapist always had to move my legs for me but this was the first time I was able to shift, move and slide my legs forward on my own.
  • Yes I’m rocking a pink shirt. Real men wear pink. End of story.

Spurts and plateaus or a slow and steady climb?

How do you measure progress? How do you know how much better something is than it was one day before? There are many things that can be measured and captured quantitatively but when it comes to matters of health or the body, how do you know if you improved more this month or two months ago?

I’m constantly being asked:  “How are you doing? You noticing any improvements? What’s new with the recovery Arash?” These reasonable and seemingly straightforward questions can be nearly impossible for me to answer. On a basic level, I would assume I’m doing better that day than the previous day, but on a deeper level it’s sometimes really difficult to understand if and how much I’m improving. This is one of the most frustrating elements of dealing with such a devastating injury that has damaged me in so many ways.

One of the earliest posts I wrote on this blog was about being on A Crowded Battlefield and how overwhelming it can feel to deal with so many parts of my body being damaged and the challenges of focusing on one thing and being presented with another challenge. In the same way, when I get asked those questions, I have to do a quick analysis of about 37 different body parts and functions and assess if and how much each of those has improved and if that’s more of an improvement than the last time I checked (probably just a few hours before).

In my head, it may go something like this: “How am I doing? Well, let’s start with the obvious: still can’t move my legs. My feet dangle as limp as they have since I began the hospital adventure seven months ago. I still can’t use a fork and knife because I don’t have enough strength in my core to sit up and use both of my hands freely. Speaking of hands, funny you should ask… yes I can type and hold a glass of water and push myself around in my wheelchair (have I mentioned how much I hate my wheelchair??!!) but I can barely squeeze the shampoo out of the bottle and forget about unscrewing an unopened jar or holding anything heavier than a book in my hand. Ahh but the toe, yes alas I can still wiggle my pinky toe. But wait wasn’t that a while ago that I started to wiggle my toe and thought that it was going to snowball into other major improvements, and oh yeah, that hasn’t happened quite yet…” It goes on and on but you get the picture.

All of this brings me back to my original motivation behind this post, how do I measure progress in this post-injury/still unfamiliar body of mine? Maybe the hardest question for me to answer is whether my recovery goes in spurts and plateaus or if it’s a painfully slow and incremental process. There are moments (like today and a majority of the last couple weeks) where I do feel like I’ve undoubtedly plateaued. Some of the exercises I did today don’t feel much stronger than they did last week, or even last month. My hands are so incredibly slow to improve and there’s little I can do to expedite their growth. Standing and walking on my own seem as far away as they ever have been.

But just when it seems like I’m unimaginably stuck on this plateau, I think about one thing: my body is constantly changing. Whether I feel stronger today than I did yesterday is hard to determine but I might feel ever so slightly different than I did previously. And maybe that’s the answer, maybe improvement isn’t always obvious or clear to me, but maybe I have to accept that change is the substitute for progress. After all, if my body was actually stuck and didn’t want to get any better, why would there be so many changes, so many tingles and burns and spasms and unfamiliar sensations and sore muscles? In that case, then maybe my recovery is more of an incremental climb, a barely upward sloped line glacially moving towards the top and signifying a very slow but consistent progressive process. I suppose I still can’t make up my mind on how to measure or explain my progress so just bear with me if I stumble or mumble a bit the next time you ask me how I’m doing.

FES Bike Riding

I LOVE riding bikes. Before my accident, I rode my durable street bike to and from work and all over town since it was my primary source of transportation. Having worked as a bike tour leader for over five years, I also appreciated the joys of recreational bike riding and would spend many weekend days on my speedy little road bike, cycling up and down and over and through so many of the most scenic locations in the Bay Area. One of the things I miss the most about my current physical challenges is the ability to have that freedom of walking out the door, hopping on a bike and zooming around on two wheels all with the strength of my own legs.

So I was pretty excited when I first learned about using an FES bike and its benefits for treating Spinal Cord Injury. FES (Functional Electrical Stimulation) involves placing electrodes on legs, arms, abs, back, glute, or any other muscles that are not functioning 100% and then applying electric pulses to those muscles and “forcing” them to work. It can be used in a lot of ways in rehab but the bike is one of the most common ways for treating lower extremities. The idea is that the electrodes plug into a sophisticated machine (with software that can be programmed specifically to each person’s needs) while the legs and feet are strapped into a stationary bike, and the electrical stimulation being sent to the muscles makes them engage and actually pedal the bike. The whole machine costs close to $18,000 so I only have access to it twice a week when I go to SCI-FIT to work out, but after an hour on the bike, my legs tingle and fatigue and feel worn out (in an amazing way) because those quads and calves and hamstring muscles were actually used.

It’s certainly no replacement for riding outdoors with hills and climbs and descents and curves and sweat and all the other goodness of riding an actual bike, but it’s a great indication that my muscles remember what pedaling feels like and that the muscle memory from all those miles I biked before my accident will help my legs come back to life.

Riding the FES Bike
Riding the FES Bike

Sleep to dream to walk

I’m hiking on a narrow path, slowly ascending and winding as I feel the crunch of the hard yet forgiving dirt beneath my feet with each step that I take. It’s late afternoon and the sun slips in and out of the looming clouds as it starts to set, its rays lingering on the tops of the lush jungle surrounding me. It’s hot and humid and I can feel the sweat collecting on my brow as I push forward and continue to wind up the trail, each step bringing me closer to the summit with an expansive view of the valley below. I’m chatting with friends and enjoying this serene moment when something hits me: I am walking! This isn’t so hard! I look down at my legs to confirm what I’m experiencing and, surely enough, they’re working just fine, striding along and without any difficulty. “Wow, this is so much easier than I expected,” I think to myself as I remember that in most of my everyday exercises, standing and taking a step on the parallel bars takes a lot more effort than this. The lucidity of the moment hits me but the experience continues as we progress up the trail. Finally, we reach the top and I stand confidently as I slowly take in the contrasts of the red dirt under my feet, the deep green of the trees below, the golden rays of the warming sun and the fading but persistent blue of the sky…

Moments later, I’m lying in bed, feeling the heavy weight of my legs as I struggle to lift, bend and move them and change positions. Immediately, I remember where I just was and realize that it all seemed so easy, that I didn’t have to pick up my legs with my arms or feel the constant discomfort of my dangling feet and ankles awkwardly twisted underneath the blankets. I remember the calmness of knowing that standing and walking are as simple as they always were and don’t require the hours of effort that I put into them everyday.

Going back to my childhood, I’ve always had a close relationship with my dreams, wanting to understand the meaning behind each person and each experience in my dreams. In fact, for the last several years, I remember my dreams everyday without fail, both good and bad, which is why I could wake up from a long and seemingly restful night of sleep and feel irritated and tired because of a specific dream I had. My favorite dreams, much like waking life, were the ones in which I was physically active, moving quickly, running, playing soccer, or discovering beautiful sights. The bottom line: my dreams and unconscious brain activity have a profound effect on my conscious emotions.

Now here’s where I think it gets interesting. Since my accident, the content of my dreams really hasn’t changed. Even though I spend the entirety of my day frustrated and struggling with the challenges of being unable to move most of my lower body, in my dreams it’s a different story. Consistently, I have dreams like the one I described and almost every time, I have an “aha” moment where I realize the magnitude of my ability to walk or stand or run or play. Sometimes that moment is even more comprehensive and I think, “wait a second, wasn’t I in a wheelchair? Isn’t it ‘normal’ for me to be rolling around in a stupid chair and if that’s the case, why is it so easy for me to kick this soccer ball or run down that path?” I wish I could say that every night I have these incredible, enlightening dreams where I’m doing all of those things I’ve always loved but even in the more benign, strange, or lackluster dreams, I’m still walking or standing or running.

My explanation is simple: So much of my conscious emotional state is focused (or should I say obsessed) on wanting to recover and get back on my feet that deep down, at an unconscious level, my brain is reminding my body of what it feels like to use my lower body as it was. Or, put another way, my waking life is spent dealing with the difficulty to engage my legs so when I go to sleep, all of that pent up desire is channeled into my dreams and I’m back in my old body, able to walk and stand. One last observation I’ll share is that from much of what I’ve read about dreams and through my studies in psychology, it is said that lucid dreaming (that moment in which you realize you’re in a dream) is often when you wake up. For some reason, it’s unusual and challenging to know that you’re dreaming and stay in that dream. Which makes it all the more perplexing to me that I’m consistently having these lucid moments, realizing halfway through my dream that I’m walking and that this moment is different from “reality”, but that my dream continues and I don’t wake up right away.

I realize I’m indulging quite a bit into the fuzzy world of psychoanalysis and I hope I didn’t lose too many of you to this point, but if you’re still reading, and you have any thoughts or ideas you’d like to share, I’d be happy to read them. We’ll see what tonight’s dreams have in store…