Major Progress in Maui

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As I’m wrapping up my time in Maui, I want to share a quick update on the incredible progress I’ve made through my work with Alejandra. This is going to be short and sweet as I’m going to let the videos do most of the talking.

We spent a good chunk of time everyday working on a specific exercise that was meant to target my glutes, hamstrings and calf muscles, areas of my lower body that I had very little connection to prior to my trip to Maui. In addition to the variety of other exercises and movements that have all been crucial to the development of these muscles, this exercise was consistent as Alejandra felt that it was necessary for my ability to establish new cerebral mappings and create mental connections to the back side of my lower body.

We started like this, with me standing on the Core Align, a machine with wooden, ladder-like beams in front of me, foot plates that slide back and forth, and with Alejandra crouching in front of me, bracing my hips and pelvis in place, and manually moving one of my legs using her hands while I held on for dear life:

About 10 days later, we had moved on to me bracing myself solo against the Core Align, maintaining pelvis control on my own, and extending my leg back on my own! I could only kick back in a short burst, and let the foot plate pull my leg back into place. This lasted for 2-3 minutes per leg before I got fatigued:

Today, only a week since the last breakthrough, I was kicking my leg back like before, only this time, I was able to control the leg against the resistance of the foot plate and slowly bring my leg forward to resting position. No loud slamming of the foot plate, no short bursts, but more leg control both extending back and coming forward. Although one leg was certainly stronger than the other, I was able to do this for 15 minutes per leg, which means a HUGE increase in endurance.

It’s been so satisfying for me to see the progress so clearly and so quickly as it’s a true testament to the value of the work I’ve been doing. I’m just sad for it to end, but already looking forward to the next time I can come back.

Update from Maui

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I’ve had the incredible opportunity to come back to Maui and work with Alejandra and her staff and share her amazing perspective and approach to my recovery. I’m a little over halfway through my time here and I must admit I’ve been pretty unplugged from everything and everyone, but I finally have the time, motivation and videos/photos to give a quick update.

As a quick reminder, Alejandra has created her own unique form of therapy she calls Neurokinetic Pilates which utilizes the concept of Neuroplasticity (the belief that the brain and nervous system can repair and rewire damaged connections as a result of injury, illness, etc.) and the understanding of the lines of fascia (the tissue that surrounds and connects all of our muscles) to perform exercises and movements that mostly use Pilates principles and equipment. (I wrote a couple of posts about my last experience with her from a few months ago, if you want to reference, the links are here and here).

This time around, it was right back to work immediately after arrival from the airport. Alejandra is incredibly focused, highly motivated, and does not like to waste one second of  our time which are qualities that I share and a few of the many reasons I like working with her so much. We had barely finished greeting each other before we were back at it, analyzing what had gotten stronger with me, what was still weak and what needed to be done during my time here.

So far, the main emphasis has been on connecting and strengthening muscles that will assist me with standing and starting to take steps. Alejandra refers to these muscles as “sleepy” as they haven’t been used much and need to be reawakened. Her skill lies in the ability to come up with exercises that find that precise body position that I need to be in (and there is very little margin for error in terms of my positioning) in order to engage those muscles. If my positioning is ever so slightly off, then the ability to connect that muscle is lost. Once we’ve woken up those sleepy muscles, then it’s just a matter of strengthening that connection by repetition.

The main muscles we’ve been working on are my glutes and hamstrings – and to a lesser extent my calves – as these are the muscles that will allow me to bend my knee from standing, lift my hip and take a step. The following video/photos show some of the exercises we’ve done everyday to connect these muscles:

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Before I sign off, I have to mention Grant Korgan who has been an inspiration for me since I first got injured and was the one who told me about Alejandra and how much she had helped him with his recovery from SCI. I’ve mentioned and linked to him a few times on my blog but now I’ve had the great fortune to spend some time with him and his wife Shawna out here. Big shoutout to them, from Ale le le waterfalls on the east side of Maui.

Ale le le falls

Bridging a damaged connection

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“My legs are responding well to me today.”

“C’mon quads, you’ve got enough strength in you for another few squats!”

“Usually it’s my right hip that is stronger but today my left hip is doing pretty well.”

Feeling a distinct separation between the upper and lower bodies is inevitable in Spinal Cord Injury. Obviously, the function of my hips and pelvis and legs and feet is very different from the function in my arms and chest and upper body. I recently starting noticing that my language had reflected this separation as well, that I was frequently talking about my legs as if they were a disconnected part of my body.

This was the result of progress after all. I had only recently started to feel more of a connection with my lower body because I had finally started to gain tiny traces of movement and control over parts of my legs, especially my quads. But with more progress comes greater expectations, at least for me. Since I had spent the better part of the last two or three months working on reestablishing that damaged yet still present connection to my legs by doing squats (like the ones I shared in a previous post), practicing standing with little assistance and modifying my walking exercises, I had started to expect more out of my legs.

I have written before about my belief of the importance of language and the power that words can have on healing and recovery. I’ve been conscious and careful about what words I use to describe myself or my body but somehow it took me a while to realize that referring to my legs as “they” and saying that “they’re responding well or not well to me” was falling into this trap that I had tried so desperately to avoid.

There is no “they” because it’s all “me”. And just because the signals getting through to my lower body are a bit weak doesn’t mean that they are cut off from the rest of me. So I will do my best to avoid this language misstep especially since I should be celebrating the fact that my legs are doing so much better and responding much more than they used to.

I’m always a bit hesitant to share videos of progress as I don’t ever want to give the wrong impression and lead people to think that I’m more healed than I actually am, but I decided it’s worth sharing the following two videos of my walking progress.

The main thing to notice in these videos (other than those incredibly fashionable leg braces that support my ankles) is that I’m locking out my own legs. In other words, my knees are not being held in place by the therapist (like they used to) and I’m able to initiate, establish and maintain one knee locked and stable while the other leg takes a step with assistance.

In the second video it’s harder to see the action of the knees but you can still see that the therapist is only helping me to complete the step forward. I’m doing most of the rest and if you pay attention to my right foot, you’ll see that I actually take a few steps with no assistance at all on that foot! It’s definitely sloppy, and it’s still a long ways to go, but it’s a start. I’ll take it.

A milestone

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Following up on my last post, where I wrote about never being satisfied of my accomplishments, yet trying to appreciate those achievements and celebrate progress, I want to share a recent milestone.

I recently started being able to do small squats using my quads, abs, and upper legs,  lying on a Total Gym machine. In this position, I have most of my body weight going through my legs, but not all of it. As you can see, my therapist is just helping to unlock my knees and bend my legs, then it’s up to me to push them back to straight. It takes me a lot of effort, as I have to use my arms to engage my lats (latissimus dorsi muscles), which engage my abs, which engage my quads. It’s strange that I can’t just tell my legs to move and that I have to use this sequence in order to get those leg muscles to contract, but I’ll take movement in the lower body, no matter how it comes.

I have to attribute much of this development to two major factors. The first is the consistent exercises I’ve been doing on an incredible technology from Germany, a standing vibration platform called the Galileo that vibrates side to side over 20 times a second, mimicking the movement of taking steps and sending a signal through my feet and up into my legs, spinal cord and brain. It has proven results in Europe and is just recently starting to become better known in the US.

The second factor is the knowledge and awareness of the body that I learned from my work with Alejandra in Maui, specifically the connective tissue in and around our muscles called fascia and the neural connections that exist within them. It was from her that I first learned about – and now fully believe in – the theory of fascia lines and how I could use certain muscles of my body that are under my control, to tap into and connect with other parts of the body in which I have less control. By constantly working on making this connection from my lats to my abs and lower body, it seems that a small signal is finally getting through. Now it’s on to working on this connection to make it stronger.

Alright, enough blabbing. Here’s the video. And now it’s on to the next achievement…  🙂

Making Magic in Maui (continued)

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Following up on my last post, I want to provide a bit more info and specifics on the rehab I did in Maui with Alejandra.

In my last post, I mentioned the emphasis on fascia lines and I want to expand on this a bit more. From what I have encountered, the conventional approach to muscles, ligaments and tendons is to think of them separately, evaluate the function of each specific part and to target that muscle (or one or two surrounding muscles) and strengthen, stretch, or stabilize that area in order to achieve the goal of improving it. For example, your biceps muscle in your arm performs a specific function, namely, to curl your forearm up towards your shoulder. Simple enough. But what about all of those other muscles that connect to your biceps? Or the muscles that connect to the muscles that connect to the biceps? How is it that some people may feel pain in their right shoulder which stems from an aggravation in the left knee?

Alejandra – and the growing number of practitioners who are incorporating the theories of fascia lines and the interconnectivity of muscles and fascia into their practice – approaches the body differently, especially when it comes to a Spinal Cord Injury and the damaged neural connections throughout the body.

On the very first day, Alejandra immediately recognized what abilities I DID have and what muscles I already had under control. She quickly assessed that if I engaged the parts of the body that I could control, then I could also engage connected muscles, nerves, and fascia and establish new neural connections. And that’s exactly what happened.

Over the course of just two weeks (which in a very slow SCI recovery world is like lightning speed), I was able to establish new connections, primarily with my abs and core. That means that I can now achieve a strong contraction of my abdominal muscles, by virtue of engaging the muscles in my lattisimus dorsi and targeting the fascia lines that run from the base of my skull, down my neck and upper back, wrap around my abs and down into my hips, thighs, and legs. I can’t overstate just how remarkable this is!

In this approach, the belief is that there are more neural connections that run through the fascia connecting our muscles than the muscles themselves. By acknowledging the potential power of Neuroplasticity (a concept I’ve discussed before, which is essential to my recovery), I am rewiring those damaged neural connections and finding new ways to connect signals from my brain to parts of my body that I previously could not move.

I realize this is a bit technical and might be hard to conceptualize for many readers, but I urge you to keep an open mind. It’s astounding what I was able to accomplish in such a short amount of time, and the progress I’ve continued to make because of the exercises I did with Alejandra. I’m including a couple more videos below.

In the following two videos, I’m lying on my side, with good spine alignment (something Alejandra emphasizes frequently) and the movements are both in a horizontal plane, that is, they’re not going with or against gravity which allows me to feel a better connection with my legs. In both instances, although the person is doing the movement for me, my leg would react, the muscles would contract and I was able to feel a great connection to my glutes, quads and legs.

In this last video, my spine is again in good alignment as the ball and the roller behind me are prompting me to sit straight, I’m using my arms to stabilize my core and the result is a fantastic connection to my legs that are doing this fast and fluid movement. This was a great exercise.

I’ve tried my best to highlight the unique nature of the work I did in Maui and show how this has helped me. It’s tough to put it all into words or images but hopefully I’ve provided a sense of why I found this therapy so beneficial.

Making magic in Maui

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It’s impossible not to feel energized, inspired, motivated and yet completely relaxed and calm when I enter into Alejandra’s peaceful studio surrounded by palm trees and multi-colored flowers swaying in the gentle, flowing breeze. This is upcountry Maui after all, the quieter part of the island away from all of the resorts, hotels and most of the island’s tourists. We’re minutes from one of the best kitesurfing beaches in the world, which makes sense since the only thing disrupting the bright sunny skies and the nighttime tropical showers is the persistent wind, not fierce or annoying but warm and invigorating.

Within seconds of entering this incredible space, I fully understand why Alejandra has chosen to have her studio in this location. I encounter an unquestionable energy of healing and positivity as I’m greeted by the warm smiles of Alejandra and her colleagues. I immediately know that I’m going to be able to get some serious work done here, so I get right to it…

It’s difficult to describe exactly what Alejandra’s method is. She has created her own system of exercise/movement/training/therapy that she calls Neuro Kinetic Pilates but it’s so much more than just Pilates. The moment I started working with her, I could tell how skilled she was. Following the request she makes to all of her clients to take my shirt off, I felt slightly overexposed, especially with my belly popping out which is a result of still not having control of my abs. She reassures me, “If I’m gonna get anything done, I have to see how your body moves and I have to start poking to see if those muscles are firing! Are you ready for that?”

Alejandra got me up on the Reformer, the Cadillac, the Barrel and a few other pieces of equipment that are commonly used in Pilates. She used pulleys and bands and cables, stretched me and yanked me and got my body in positions it had never been in with the final result being me more exhausted doing her exercises than anything I had previously done. Each exercise I did consisted of multiple simultaneous prompts from her asking me to do what seemed nearly impossible. How could I possibly hold my balance in this position without falling over, while still engaging my lat muscles, keeping my collarbones open yet chest in towards my ribs, breathing with my diaphragm and trying to suck my belly in all at the same time??!!

Alejandra uses fascia lines to connect different parts of the body to each other and awaken neural connections that are damaged. And just so you know, understanding fascia lines isn’t some alternative, eastern medicine, hippy dippy approach. In fact, when I asked her if the fascia lines had anything to do with acupuncture meridians, she simply shrugged her shoulders and said that she had no idea because all of her training was in western medicine. Simply put, fascia is the connective tissue that surrounds and connects muscles, nerves, and blood vessels and runs through our entire body. One way to think of it is that instead of having over 600 separate muscles throughout the body, we have just one muscle with 600 different parts to it but all interconnected and related. (Check out this link to learn more)

So I’ll leave it there for now and throw in a couple videos of some of the exercises that I did, so you can see what this all looks like. I’ll write another post about my work with Alejandra with more videos and maybe get into the theory a bit more so stay tuned….

Learning how to rest

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Sometimes, you just need a break. Sounds simple enough doesn’t it? Well, this hasn’t been an easy lesson for me to learn. As I’ve admitted on my blog many times before, I tend to be of the mind frame that more activity is always better. More exercise, more repetitions, more movement, more more more. I’ve never slept much and honestly never had much of an appreciation for sleep partially because I felt like it was taking time away from doing other activities. Why “waste” time sleeping when I can learn a new skill, read a book, play music or create something? As a result, I haven’t always had much respect for the impact that proper rest can have in an intensive training regimen.

After almost 14 months of relentless physical training and rehab, repetitions, visualization exercises, thousands and thousands of attempts to connect my mind to my body and vice versa and reestablish those damaged neural connections… finally, I took a break.

I came to Hawaii with my girlfriend and spent a week fully unplugging from my intensive training and letting my body do something it hasn’t done since I was lying in a hospital bed last year: rest. I didn’t train in any way, I didn’t even do any mental exercises, I just completely tried to let myself forget my routine and enjoy these moments of rest and relaxation. The result was an incredible week of quality time with my girlfriend, some of the best sleep of my life, healing some extremely overused and tired shoulders and arms, and a near constant enjoyment of the present moment. At times, I can even say that I almost forgot about my injury completely, which was an incredible blessing.

Ok so in all honesty, I wasn’t completely inactive the whole time. Thanks to my girlfriend’s persistent urging, we got into a double kayak and spent almost an entire day paddling up a quiet river into the peaceful jungle. I didn’t think my core was strong enough to handle even five minutes in a kayak, but her insistence that I was ready and able was right. Proof:

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This trip is part rest and part therapy as I’ll now spend the next several days working with yet another practitioner, a person who’s had astounding results treating SCI with her own creative and unique approach using her system of Neurokinetic Pilates and emphasizing neuroplasticity, the belief that the brain and nervous system can rewire and repair itself. I’ll write about my experience with her in my next post, but for now, I’m still enjoying the tail end of this badly needed and deserved rest.

100% Active mental effort

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I want to attempt to explain one of the more nebulous and perplexing aspects of my recovery. I’ve been wrapping my head around this for a while now but I haven’t quite figured out how to put it all into words and hopefully make it understandable for people without a Spinal Cord Injury. There is a significant process that is noticeably more difficult for me now than before my accident: the monumental, almost overwhelming mental effort that I have to put into all of my rehab.

Every exercise, movement, or activity that I do involves a massive mental commitment from me. This is nothing like what most of us are used to doing when we lift a weight, take a step, hold a stretch or pedal a bike. As an able bodied person, those actions are performed subconsciously. You don’t have to tell yourself and instruct seven different parts of your arm how to curl a dumbbell… you just do it. You don’t have to close your eyes, channel your breathing, try to contract one muscle while relaxing another just to take a step when you’re on a run… you just place one foot in front of the other and continue on. Not so with a Spinal Cord Injury.

Everything I do involves me REALLY thinking about it, specifically when it comes to those parts of my body that are most damaged by my injury and not functioning properly. The nerve signals just aren’t getting through like they used to so it takes me that much more effort to try to engage a muscle that hasn’t effectively received the signal to engage. This is what makes an injury to the nervous system so debilitating. It’s not just a matter of effort. If it were, then the many hours a day I spend on my rehab would have much quicker results.

I think back to what it felt like to exercise before my accident and it all just seems so easy to me now! I didn’t really have to think THAT much about what I was doing. I would just DO things, perform movements, complete activities, and ultimately I’d get stronger and fitter. I was never mentally drained from going on a run or biking half the day because I could do that repetitive motion subconsciously and with little to no mental strain, all the while listening to my iPod or chatting with a friend. Nowadays, if I don’t give 100% of my mental attention and focus to the specific movement I’m doing, not only will I have little to no chance of effectively completing the movement, I will finish the activity without any sense of accomplishment.

Another way to put it is that those muscles that I’m trying so desperately to wake up and reestablish the connection with will only have the teeniest, tiniest chance to get that signal from my brain only if I try really, really hard to break through the neurological impasse that’s taken root in various parts of my nervous system. This whole process has educated me greatly on how incredibly electrical our bodies are. No matter how big or strong our muscles may be, nothing can happen unless the wiring that’s distributed throughout the body is functioning properly. As a result, I often have to close my eyes and remove all visual stimuli in order to be able to give sufficient mental awareness and energy to what I’m doing.

This may seem arduous and exhausting, and it was at first, but now I have to admit I kinda like it. It makes me very present in what I’m doing, it forces me to tune everything else out and focus fully on the task at hand and although I wish I could see the results more quickly than I do, I know that this tremendous effort is what will sustain my recovery and continue the healing that I so desperately strive for.

My 15 minutes of fame

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Just a couple days before I went to Ekso Bionics for the first time to walk in their exo-skeleton, they asked me if I would mind talking to “some friendly British guys doing a short documentary” about my initial experience. A few hours later, they called me again and asked if the British guys could come to my house and ask me a few questions before I actually walked at Ekso. I agreed to everything, assuming these guys were doing some esoteric, low-profile documentary project that no one would ever see.

The friendly Brits setting up at my house
The friendly Brits setting up at my house

The British guys showed up at my house (and indeed they were very friendly), they explained that this was actually for Al Jazeera English, a very well reputed international news channel with a growing influence and a viewership in the hundreds of millions worldwide. I was STOKED. I’d been reading and watching the shows on Al Jazeera for years and was always impressed by the quality and depth of their programs. Now I was going to be a part of it??

So let me say a couple disclaimers about this show before I sign off. Firstly, in full disclosure, the fact that this happened was simple good fortune. These guys didn’t seek me out personally, it just so happened that they were here that week and I happened to be one of the people who was walking for the first time on those days they were here. The fact that they decided to profile me and build the program around my story was a nice surprise.

Secondly, while I was filming with them and answering questions, I was repeatedly asked how excited I was about the future of Ekso and how it could apply to me. My response was honest and I want to reiterate it here. I think what Ekso is doing is fantastic and prolific. They have developed incredible technology that will revolutionize the treatment of people with Spinal Cord Injury. While I’m extremely grateful and excited about using Ekso as much as possible and reaping the benefits of their product, I also have no intention of using Ekso for a long time. My goal remains the same: to stand and walk and regain functionality in my lower body without any help. I see Ekso as a wonderful tool for rehab and recovery but I hope and plan on not using it for everyday life. It’s stubborn, but that’s just me…

Alright so here it is. Feel free to spread the word:

http://www.aljazeera.com/programmes/thecure/2013/06/201362384057310764.html

Repetitions and rewards

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As a lifelong athlete, I’ve always understood the benefits of working hard, challenging myself physically and realizing the results of my actions in a relatively short amount of time. I remember being nine years old and amidst my attempt to play every sport under the sun, I became more interested in soccer and decided to step up my game. Like any soccer player, I inherently wanted to ignore my left foot and exclusively use my dominant right foot to dribble, pass and shoot.

One day I was kicking the ball around with my father and he told me, “Son, you don’t want to play like a one-legged chicken. You have to use your left foot and train it to be as good as your right. Only then can you be a dominant soccer player.” It wasn’t easy at first, but I heeded my dad’s advice and forced myself to use my left foot as much as my right. After some time, and many repetitions, I began to notice a difference. My left foot had improved and while it could never be as good as my right, I had engrained a physical knowledge in my soccer skills for years to come. Up until the last time I played soccer, just two days before my accident, I was a right-footed player with a strong left foot.

Another example is when I decided to train for my first triathlon a few years ago. I was a strong enough cyclist and runner but I hadn’t swam since I was a kid and I was mortified at the thought of swimming a long distance. The first time I jumped in the pool and dusted off my freestyle stroke, I lasted maybe six minutes before I was panting and wheezing like a lifelong smoker who had just sprinted a mile. I was frustrated and disbelieving that I could be in good shape yet struggle so much with this new activity. Long story short, I kept at it and although the next few times were almost as painful as the first, I slowly but steadily got better. Soon I could swim ten minutes, then twelve, then twenty and before long, I was able to stay in the pool consistently swimming laps for over forty minutes. (Full disclosure: when it came time for my triathlon, I got in the water and embarrassingly swam so crooked that I ended up way off course, and needed the officials in the boat to catch me and send me back on track. I finished the swim nearly last, but at least I wasn’t out of breath. Thankfully I made up for my poor swimming during the bike ride and the run, and finished my first triathlon in the top ten of my age group.)

Now I’m still aggressively doing rehab for many hours a week and my exercise regimens have become more intensive and (hopefully) more beneficial. But I don’t realize those physical rewards as quickly as I’m used to and that becomes extraordinarily frustrating. So much of my therapy is based on repetition. The theory is that by repeating a motion or movement over and over, we can rewire and retrain the brain and spinal cord to relearn that movement again.

Also, in order to target muscles that I don’t have motor control of, I do exercises that essentially force these muscles to engage. For example, my abs are still too weak to do a situp and the neurological connection to them is still impaired (i.e. if someone punched me in the stomach, I couldn’t flex or tighten my abs). So I do assisted situps, using my arms to pull myself up and consequently forcing my abs to contract. Yes my arms are doing most of the work at first, but over time, those abs have gotten a bit stronger and I use less and less of my arms.

Over time. That’s the problem. I’m used to seeing results quickly. I’m used to hard work and effort trumping fatigue and being able to realistically overcome physical challenges and limitations. I’m used to stories of friends who had never run long distances being able to train themselves over a few months to run a marathon. But with a Spinal Cord Injury, it’s just not the same. I can work as hard as possible (I like to think that I do) and push myself to the absolute maximum every time I’m doing an exercise, but improvement and progress shows itself so, so slowly that it’s painful. I give every rep 120%. I close my eyes and I focus and visualize and push and pull and twist and lift and grimace until my muscles burn and my brain is tired, and I still try to keep going. But ask me if or how I’ve gotten stronger in the last week or two, and I usually won’t have a good response.

To end on a positive note, as difficult as this process is, the reality is that things have gotten better and stronger, it just takes so much time. I can’t imagine what this rehab would be like if I wasn’t already an athlete or if I didn’t have a good understanding of body awareness and how to challenge myself yet remain within my limits. At least with these things going for me, I trust that my body instinctively wants to become stronger and I fully believe that my body desperately wants to walk again, because that’s what is natural and what it’s done for so long. With that trust and knowledge, I will continue to work hard and notice improvements, slow as they may be…