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 the 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 the 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 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…

Bridging to the future

There is one exercise that has been consistent with every, single practitioner that I’ve worked with since my accident, and that’s bridging. If you don’t know what it means, you’re not alone, as it’s common in yoga and some other practices but not your every day gym workout fodder like pushups, situps, lunges, etc.

Bridging involves lying flat on your back with your knees bent, feet flat on the ground, then lifting up your pelvis and torso so that you have more or less a straight line from the tops of your knees down to your shoulders. (Ok if my description was no good, feel free to jump to the video at the end of the post and come back to keep reading….). It’s not a massively complicated movement, but in its simplicity lies its importance.

I started trying to bridge shortly after my accident but I needed a lot of help. Whoever was with me had to hold my knees in a bent position, apply enough pressure to my feet to keep them from sliding, then literally left my entire torso for me (usually using straps of some kind) while I tried to visualize the movement. I would try and try and try, I would dig my elbows into the ground and attempt with all my limited might to somehow get my core up into the air and hold it there. I would think back to all the yoga classes I had gone to, in which bridging was a relatively painless task, and I would try to summon my spirit. But without any motor control of my abs, hips or legs, and with my knees flopping around from side to side, it felt like my torso weighed a thousand pounds and that lifting that mess of organs, bones and muscles would slight me forever.

Fast forward to a few days ago, following up on the work I did in Maui where I was finally able to start using my glutes and hamstrings and better engaging my back and abs, and here’s what happened:

 

I was thrilled. Especially since the therapist is giving me minimal assistance and just helping me with my knees a bit. She even lets go of me completely once I hold my pelvis up in the bridge.

There are few exercises that are so consistently emphasized by every practitioner in SCI recovery so I recognize the importance of this accomplishment. One of my therapists told me that in his experience, everyone who he knew who had recovered the ability to walk could bridge; that it was essential to the necessary movements of walking.

For me it’s validating to know that after literally thousands and thousands of struggled repetitions over the span of almost two years, I was finally able to unquestionably accomplish this movement which had seemed near impossible for so long. It is just a small step, and it’s not perfect yet, but it’s one less thing on my giant recovery to do list.

Major Progress in Maui

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

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

“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.