Two wild horses

Recently, more and more time in each session of my rehab has been dedicated to doing a variety of exercises in a standing position. This is following on the work I’ve done using the Neuro Kinetic Pilates method that I’ve learned in Maui and almost always using the Core Align, an amazing piece of Pilates equipment that allows me to push my limits in a standing position while remaining safe and secure and minimizing the risk of falling. (See this previous link to remember what I’m referring to)

By finding new ways to establish movement through my lower body, I’ve encountered a new challenge. I call it the shakes. Put simply, my legs start to shake… and shake… and shake… and just when I think I may be done, my legs shake more. The video below is a perfect example of what I’m talking about and it occurs after some 15-20 minutes of doing squats or lunges or any of the other exercises I’ve been doing recently to target my quads and improve my standing stability.

It took me a while to really understand what this was. At first, when I would tell some people experienced with SCI, they would shrug it off and say that it’s simply clonus and just another typical example of the cervical level injury that I suffered. Clonus is defined as “involuntary and rhythmic muscle contractions” and it is commonly seen in many people with spinal cord injuries. But, like the doctor testing your reflex by tapping your knee with a hammer, clonus is also a reflexive result and can be tested for and replicated by a practitioner. After doing these tests with me, the PT scratched her head in confusion and confirmed that I definitely didn’t have signs of clonus.

So what’s with the shakes?

As with nearly everything else in my path of recovery from SCI, I’ve had to figure it out myself.

To put it as simply as possible, until recently, the controlled movements that I had in my legs were all based on a single movement pattern. Since I was first able to start bridging and standing up independently with a walker, I’ve contracted my leg muscles using a specific pattern of engaging them and it’s gotten me really far.

But since I started doing some new standing exercises a few months ago that target completely different muscles, I’ve established a new pattern of movement and carved out a new neurological pathway. Muscles that haven’t really contracted or have only had minor contractions and been overpowered by other dominant muscles are finally being forced to contract. And since my spinal cord can’t manage the communication between my brain and my legs as effectively as possible, those muscles start freaking out and shaking like crazy. It often feels like I’m trying to stand on two wild horses hell-bent on roaming the countryside.

It takes an extraordinary amount of mental effort for me to keep working these new patterns and strengthening these new neurological connections but it’s a great sign that I’m able to gain new movement and work underutilized muscles that are being forced to step up to the plate and show their stuff.

While I get annoyed with the shaking since it forces me to slow down and struggle through the movements, I still take it as a positive thing. If establishing new neurological connections, gaining strength in previously underperforming muscles and finding new ways of movement mean that I have to deal with two wild horses shaking like crazy, then so be it.

Walking on water… I mean… IN water

Finally a new blog post! Yes it has been a while and I’ve received more than a little flak for not posting a recent update so here I am.

Last summer I wrote a post about my newfound love for swimming and for being in the water. At the time, I had trained for, and completed, a 2.4 mile open water swim and since then my love for being in the water has not only remained steady but increased.

At the end of most of my swims, I usually spend the last few minutes standing, doing squats against the pool wall, bobbing up and down and playing around, and just trying to move my body in an upright position and challenge myself in ways that I can’t do on land, for fear of gravity getting the better of me and tumbling into the ground. In the past, I would try to walk in the pool by leaning my hands on Brita’s shoulders for balance (and in turn challenging her balance with my sloppy grabbing/leaning/pushing/pulling motions) and she would step my legs for me with her hands and keep me upright with her knees as I tried –and likely didn’t succeed– to look somewhat competent. Not too long ago, one day when Brita was out of the pool and I was lingering in the water, soaking up (pun intended) every last bit of the floaty, weightless, aqua goodness, I tried to give walking a go by myself.

In chest high water, I was able to keep my balance by thrashing my arms and pushing the water around as I would lean forward, back, or to the sides. Then I could concentrate on trying to take steps, which is still the missing piece of my walking abilities on land. It was ugly, and I was probably straining way too many muscles and contorting my body like a slow motion Frankenstein, but I was able to take a few very labored steps. While this has improved a bit over the last few months, it’s hard to work at it consistently because of the logistics of the pools I’m in, the varying depths of the lanes, fatigue, etc.

Recently, I spent a few days at Neuroworx, a state of the art non-profit neurological rehab center that I went to shortly in 2013, not too long after my injury (my posts here and here) and had the great fortune of using their incredible therapy pool. With parallel bars in the water, underwater cameras at every angle, and a floor that raises up and down and functions as a treadmill, this thing is BADASS. After doing some core exercises, we decided to turn on the treadmill at a very slow speed and see how I could walk.

Now let me take a moment to be clear and avoid any misleading or false hope.

I am still cranking and pulling with my back more than I ever should. Pulling my legs forward is extremely challenging and takes all of my effort. I’m holding onto parallel bars for balance. I’m supported by the water and the lack of gravity makes it a lot easier to move. At this time, I am NOT able to replicate this on land. You can’t see my upper body but my walk is still ugly and slightly less, but still undoubtedly Frankenstein-esque.

So with all of that said, here’s my water walking.

Not great, but not bad right? I’m pulling one leg through and maintaining support on the other leg, I’m not falling over (mostly thanks to the parallel bars) and once I get started and in the rhythm, I can keep this going for a couple of minutes.

Everyone always asks me what this feels like, does it feel like I’m walking and the answer is simple: I don’t know. It doesn’t feel completely natural or controlled but it’s also not a random, disconnected, spastic movement. I know that I’m compensating my weaknesses by walking in a very unconventional way, but at the end of the day, I’m taking steps. I’m propelling myself on my own two feet. And it still feels pretty damn good.

Dimming the muscle switch

With the arrival of 2016, and with it the continued realization that time passes faster and faster every year, it makes me reflect back on the goals and objectives that I set for my recovery last year, to the unfinished goals that I will carry over into the new year and to new objectives I will set for my continued path of spinal cord injury recovery.

I can confidently say that my body has changed significantly in the past year. In the last couple of weeks especially, I’ve been doing a lot more work in standing positions and my trainer has challenged me and in turn pushed the limits of the Pilates equipment (which have probably never been used for some of the exercises we do…) by coming up with novel ways of strengthening my current abilities and building off of those to challenge my body to find the next steps of function.

As a result, my endurance to stay standing – while much less than I would like – is noticeably better than it was even a month or so ago. I’ll share a video below to show one of the recent exercises I’ve been working on and one that went from needing a lot of assistance a couple of months ago, to now being able to control everything relatively smoothly on my own.

So where do I go from here?

One of my main goals for 2016 will be what I’m calling “dimming the switch.” I use the analogy of a light switch because it applies quite well to what I’m referring to.

Right now, the engagement that I get to the muscles of my lower body generally works like a light switch, meaning when I turn a certain set of muscles on or perform a particular movement, those muscles are on 100%, working hard, contracting strongly. When I decide to change positions or turn off, everything just kinda releases all at once. So I’m stuck with a light switch; on or off; 0 or 100%, with not much control of the in between.

For example, in the video above, if I were to try to bend my knees or do that same exercise in a light squat (which I must admit would be rather challenging for anyone), I would crumple to the ground, unable to dim that switch and maintain control of my stance. I either have to stay with legs locked straight or I get nothing at all.

You see where I’m going with this right?

The dimmer switch is essential to any kind of functional movement that I’m working to regain. I have to be able to control some muscles at 50 or 70% and not just 100%. Not only that, but I also have to relearn and retrain myself on how to differentiate one side of the body from the other. In other words, if I’m going to be able to successfully take steps, my left leg must be able to bear weight and be at 80 or 90 or 100% contraction while the right leg is lifted in the air and taking a step. It utterly blows my mind to think about how a healthy body and spinal cord can so naturally manage a movement pattern like walking that may seem simple, but is actually startlingly complex as it’s a consistent dimming up and down of different muscles at all times.

Like so much of what I have understood since my injury, our bodies and our movements are incredible and should not be taken for granted. It’s easy to underestimate just how much is involved with a seemingly simple set of movements, until you’re faced with an entirely different body that doesn’t react the same way.

So I will dedicate 2016 to finding that dimmer switch and being able to control my lower body movements more fluidly and effortlessly.

Grateful for more than the gobble gobble

I started writing this blog just over three years ago today, on the eve of this all-encompassing American holiday, and now I look back to the third blog post I wrote, just before Thanksgiving where I listed the reasons why I was thankful despite the horrific nature of my situation and being only four months out from my spinal cord injury. Fortunately, every reason for gratitude I listed on that day still applies to my life today, with some notable additions of course, and it makes for a good opportunity for me to recognize one particular thing for which I’m recently very grateful.

I’ve shared my experiences at length about the unique therapy I’ve done in Maui and its incredible contribution to my recovery but one of the biggest challenges I always had after coming back home from Maui was the struggle to find ways to continue doing that Pilates-based therapy. I always felt like I would make these huge gains in Maui, only to return and have that momentum of improvement stall. Luckily, that isn’t an issue anymore.

Absolute Center is a busy, successful and well-regarded Pilates studio a short drive from where I live and in recent months, it has become my primary place for rehab and wellness. When I met the owners of the studio, I don’t think any of us expected our encounter to lead to the establishment of a legitimate program geared towards people with spinal cord injuries completely different from their usual offerings, but that’s what has happened. There are scores of Pilates studios all around the country and the world but it took the curiosity, progressiveness, and forward thinking of the studio owners to recognize that there was an opportunity to provide this population with a viable option for this kind of Pilates based therapy.

My last few months of training and being able to continue working with the same principles and techniques that I learned in Maui have been invaluable for my recovery. I’ve seen greater gains in a short amount of time by virtue of being able to consistently train in a supportive environment and amongst talented and knowledgable people who are committed to help me reach my short and long-term goals. Additionally, a number of other people with spinal cord injuries have been training there too and as a result, alternative and creative approaches to spinal cord injury recovery are being explored and pursued.

I am grateful for meeting these people and having the opportunity to maximize my recovery efforts and I’m excited see how a more persistent commitment to this therapy will show itself with the improvements in my body by the time I go back to Maui again.

While I must admit that I don’t love turkey or a lot of typical Thanksgiving fare (which is why we make a somewhat less traditional feast!), what I do love about this holiday is the notion of taking a moment to be grateful. Happy Thanksgiving to everyone.

 

The proof and the pudding for Visualization

A few days ago, news came out of a research study from UC Irvine of a man using his thoughts to move his legs and walk by circumventing his damaged spinal cord. He was five years post Spinal Cord Injury, with no motor or sensory function below his level of injury and was able to train his brain and body to relearn how to walk. The process didn’t involve an implant or surgery but instead used an electroencephalogram (EEG) system that sent his brain signals directly to electrodes attached to his legs.

Although he was the only subject in the study, thus proving that the results must be replicated many times for them to have a more significant impact, this is still an incredibly exciting breakthrough. I recently wrote a post about my thoughts on cures for SCI and while I have no doubt that scientists will continue to explore this method and improve upon it, for me the most interesting element of the study, and the most relevant, was one of the more subtle points.

“He first underwent mental training to reactivate the brain areas responsible for controlling movements involved in walking. The researchers placed an EEG cap on his head to read his brainwaves, and he trained to control an avatar in a virtual reality setting.” (CBS News)

In other words, he had to visualize moving his legs and walking in order to establish that pattern of brain signals and then, just like strengthening a muscle by lifting weights or exercising, he had to continuously exercise that visualization pattern and strengthen the connection between the thought and the movement he wanted to achieve.

I’ve written at length about my frustrations with the inconsistency and shortcomings of the medical establishment when it comes to Spinal Cord Injury, but one thing that I did consistently hear from almost every medical practitioner was the importance of visualization as an essential element in one’s recovery. Everyone said this to me. “If you can’t move that part of your body, then think about it. Try to move it as much as you can. Keep sending those signals.”

As a result, so much of my recovery efforts are based on combining my intent and effort to send the signal of movement from my brain to a part of my body and then achieving that movement either with the support of equipment or a person and most often both. Even when I swim, I’ve established the habit of constantly thinking about kicking my legs and propelling myself forward using my lower body, even if I have difficulty doing so on my own.

But how do I know if my efforts to visualize and send brain signals are actually accomplishing anything? Is it possible to measure visualization skills in any way?

In my belief, those breakthroughs of progress that I’ve achieved must be somewhat attributed to the  diligent effort to visualize and constantly try to tap into the mental aspect of my training as much as the physical. While it’s impossible to say that X amount of this one accomplishment is due to visualization I did on certain specific days, I think the bottom line is that the mental exercise can and does lead to physical results, as evidenced by this research.

Furthermore, neuroplasticity (the all important yet still not widely accepted concept that the brain and nervous system is not hard wired and can rewire and repair itself) gets a big boost from this research. The old school, outdated way of thinking about the neurological system would say that any damage to the system is permanent and irreparable. But if a guy can go five years after his injury, and in a manner of a few weeks visualize and retrain those parts of the brain responsible for sending signals to his lower body, and then find a way to move those muscles and walk by skipping over the damaged part of his spinal cord, then I don’t think there’s any question that neuroplasticity is real and should finally become acknowledged and taught in the medical textbooks.

I’m happy to see this story confirm the importance and success of visualization and hope that it can lead to further developments and more progressive ways of treating SCI and neurological conditions.

My hips don’t lie

I’ve been back in Maui again, doing the incredible therapy that I’ve described in previous posts, and working on an entirely different set of objectives this time. I came here with a couple of ideas of where I wanted my efforts to go considering where I am physically right now. I’ll try to explain as clearly and concisely as possible, and it all begins with the hips.

Over the past few months, my exercises and efforts have involved more subtle aspects of my body development. Specifically, the stability of my hips and pelvis have been a central point of my ongoing therapy. In fact, I dramatically changed some of my exercises in recent months to eliminate detrimental compensatory patterns and to ensure that I was retraining my nervous system and muscles in the correct position, giving everything the best possible chance to succeed.

The reasons are simple: 1) Without hip stability, the rest of me is shaky and ineffective. Or put another way, how will the top floors of a four-story building be stable if the second story is swaying and shaky? [See my recent post about this to learn more] 2) Without proper hip positioning, I could be arching my back or compromising my spine which in turn could compress my spinal cord further (the last thing I need) and restrict the flow of nerve signals from my brain to my lower body. 3) It’s difficult to think about taking effective steps with my legs if the pelvis and hips are out of position or I’m trying to establish an entirely new pattern of movement that my brain, spinal cord and body aren’t accustomed to.

As a result, when I came to Maui on this trip, Alejandra and I discussed how best to move forward to achieve the next steps in my recovery. In her words, the human gait is incredibly complex. There are a variety of different muscles involved in different ways at different times in order to perform different objectives. While there are ways to overcome or compensate for some of these muscles being weak, there are others that just cannot be ignored or undeveloped, if one is to take effective steps and establish a sustainable walking pattern.

As a reminder to anyone who’s read my descriptions of Alejandra’s method and approach, muscles aren’t treated individually but as a system of muscle lines connected by the fascia, connective tissue that covers and connects every part of the body to the rest. But to make it easier to understand, there are two primary muscles that I’m working during this trip that are both essential to retraining myself to learn to walk.

The first is the medial gluteus on the side of the butt. I never realized how important this relatively small muscle was until now but it is crucial for the gait pattern. When you shift your weight to one leg in preparation to take a step, without a functioning medial glute, your opposite hip (the one taking the step) would drop down, throwing off your balance, straining your back and spine and making it harder to swing that leg through and take a step.

The second muscle is the psoas, which I went into a bit more in my last post so I’ll spare most of the details here. Needless to say that the psoas is the key component in actually flexing the hip off the ground and allowing you to swing it forward. Most of everything we’ve been doing in Maui has revolved around these two muscles, and how they interact with each other.

This video is a good example of both of these muscles working together. As I pull my leg forward, I’m working my psoas and as I extend back I’m using my medial glute.

In this second video, I’m standing on the Core Align, stabilizing my right leg through the medial glute (as well as quads and other muscles), which allows me to use the opposite medial glute to engage and kick my leg out to the side, all the while trying to keep my hips and pelvis aligned.

I’m not trying to downplay all of the other muscles involved in walking, but these two muscles, and the work I’ve been doing with them emphasize the importance of pelvic stability. As Shakira says, “my hips don’t lie.”

On cures

There have been some innovative and very high profile developments in the last few months when it comes to treatments for Spinal Cord Injury (SCI). Scientists, researchers, and advocates have demonstrated that creative approaches can lead to exciting and potentially groundbreaking results in treating this oh so complex injury, which no one seems to really, truly understand.

I’m often asked how excited I am about these breakthroughs and what they could mean to my own recovery and although my usual, quick answer is, “Yeah, it’s pretty cool. Lots of interesting things happening these days,” I figured I’d use this blog post to expand and clarify my true feelings.

If you have no idea what I’m talking about, I’ll quickly outline and link to the three major developments that have come out just this year.

1) Epidural Stimulation – By implanting a small device over the protective coating of the spinal cord, and sending varying electrical currents to activate nerve circuits, four initial participants (all having suffered severe SCI’s) were able to achieve some motor control in their lower body as well as regain some other essential bodily functions.

2) Olfactory Stem Cell Implants – Scientists in Poland and the UK removed a man’s olfactory ensheathing cells (specialist cells from his nose that form part of the sense of smell), grew them and then injected them into his spinal cord to repair the damaged nerve fibers. Six months after surgery and with hundreds of hours of exercise and therapy, he slowly regained the ability to walk with braces.

3) Proteoglycan Drug – A neuroscience professor in Ohio developed a drug that releases nerve fibers that have become trapped in scar tissue after a spinal cord injury, thus bridging the damaged cord and restoring some function. The study was conducted on rats but they’re quickly planning on trying it on humans.

Now that we’re all caught up and on the same page, I’ll explain my thoughts on these developments starting with the big positives and reasons I’m excited, but then also sharing why I’m cautious and skeptical.

First of all, I’m thrilled that more people are paying enough attention to this injury to come up with long-term projects to address it. A scientist behind the second story I mentioned above was quoted as saying that this development was “more impressive than man walking on the moon”. I couldn’t agree more.

Secondly, the fact that these three developments all used different methods gets me excited. If they were all stories about stem cells or a medicine of some kind, I would be more skeptical of having all the eggs in one basket. Then, if something negative or ineffective came out about that one approach, the whole thing could come crumbling down. Three different methods means that the damage to the spinal cord is being treated with three individual approaches that each have their advantages and shortcomings, but they’re all leading to results, which is incredible.

On a similar note, the diversity of approaches means that there could be a potential to combine solutions in the future. Maybe with some people the stem cell treatment is less effective but the Proteoglycan drug picks up the slack. Maybe none of the treatments on their own lead to dramatic improvements, but in combination with each other (and whatever new technologies arise) a person can bounce back nearly 100%! How amazing would that be??!

My final reason for excitement is because this topic is, for lack of a better term, sexy. Curing paralysis is a BIG DEAL. Getting people out of wheelchairs and back on their feet is truly earth-shattering. As someone who would give ANYTHING to regain function the way I had it before my injury, I can honestly say that no other medical breakthrough gets me as fired up as this. I’m obviously biased, but I embrace it.

Now for my reasons for caution:

The time frame for any of these treatments to reach the masses is loooong. The first study was conducted on four people. The second, on one. The third was on rats. I know technology moves at a frighteningly and often surprisingly fast pace these days, but even by the most optimistic estimates, these treatments are a few years away from being available to the millions of people worldwide who would benefit from them.

The financial costs, both for developing these treatments and for receiving them in the future, are huge. As I mentioned above, curing paralysis is truly groundbreaking news, but unfortunately, there hasn’t been nearly enough investment in finding ways to do this. The reality is that SCI doesn’t affect as many people as cancer or diabetes or AIDS and while I wish I could say that it’s not a numbers game, everything I’ve read proves that it absolutely is a numbers game. When the Christopher Reeve Center (with millions of dollars of its own, which has been the dominant driving force in treating SCI) has to launch a big PR campaign (see the epidural stimulation link above) to raise funds in order to continue research, it shows just how underfunded and under-recognized treating SCI is.

On top of that, we have to assume that at least initially, any potential cure will likely have a high financial cost to the user, which will automatically limit the ubiquity of the treatment. At least in the US, where medical insurance is always trying to find ways NOT to pay for anything, I’m not hopeful that insurance companies would be on the cutting edge of promoting and paying for a splashy yet expensive cure, even for an issue as sexy and exciting as this one.

I’m not trying to be a Debbie downer about all of this, I truly am thrilled to see what the future holds, but I’m a pragmatist and realist at heart. The future is very exciting, but for someone like me, who suffers through day after day of frustration at not having a fully functional body, I don’t have tons of patience to just look forward to the future. I want to do something now. I don’t plan on sitting around and waiting for someone else to solve my problem and I’m way too Type A and motivated to stand by and accept complacency or the status quo. For that reason, none of these developments changes a thing in my day to day routine. I’m still going to work as hard as I have been to recover through my own hard work and will.

The one thing that all of these scientific developments prove to me more than anything else, is that the existing paradigm and approach for treating SCI is outdated and just plain wrong. These ideas show that the antiquated yet predominant way of thinking, of taking away hope from someone, of telling them they’ll “never do this or that again” has to change. It was only a few years ago when no one in the medical community believed in neuroplasticity, or the ability for the brain or nervous system to repair or change itself. Now people are changing their minds faster than ever and accepting that as arrogant and all-knowing as we human beings think we are, we don’t always know the answers. That way we remain open to solutions as they come, and I’m fully confident that in treating SCI, the solutions will indeed come…