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.

Swim like a cannibal pioneer

Throughout my journey of recovery from spinal cord injury, as I’ve maintained my focus and commitment on reaching my ultimate goal of getting back on my feet and walking, I’ve learned the value of setting and working towards smaller goals. The proverbial mountain I’m trying to climb is bigger than anything I’ve ever experienced and I have been, and continue to be, in it for the long haul. I’m proud of the progress I’ve made and the accomplishments that I’ve achieved (all of which I was told I wouldn’t do) but I would be lying if I said that my journey has been anything but arduous, full of challenges, breakthroughs, moments of immense frustration and moments of unparalleled hopefulness.

Because of the immensity of my goal, I have found focus and comfort in setting smaller, more attainable objectives and working towards those. The best example of this was the months and months of hard work I did that was dedicated to the moment I would be able to finally stand up on my own and ask Brita to marry me.

I’ve previously shared my newfound love of being in the water and swimming largely because of the freedom I feel from the weightlessness and the relief of pain from not having to deal with gravity and its impact on my body. Last summer, I set a goal to complete a 2.4 mile open water swim and I thoroughly enjoyed the process of training as well as actually completing the swim. But I remember that the moment it was over, I was already looking ahead to the next challenge. A couple months later, during a trip to visit friends, Brita and I swam in Lake Tahoe’s smaller, slightly warmer, less sexy and well-known but still gorgeous neighbor: Donner Lake.

Since I was seeking a new swimming challenge and wasn’t quite able to find an existing event that could serve the purpose (the swims weren’t long enough or they were relays with too much distance or the water temperature and other conditions were too challenging), I decided I would make up my own event and the answer couldn’t be more obvious.

Though I toyed with the idea for quite some time, it’s only recently that I finally put the pieces together and decided that my new challenge would be to circumnavigate the perimeter of Donner Lake, which by my best Google Earth estimates, comes out to 5.8 miles.

Yes it’s more than double what I did last summer, yes it will be at 6000 feet of altitude, and yes with my steady but very slow pace of swimming it will likely take me the equivalent of a cross-country flight, but I couldn’t be more excited about it. I want the swim to be about so much more than just my personal commitment to work towards this goal (I’m going to do that no matter what) so I’m inviting friends and others to join me in this endeavor. Whether swimming is completely new or a familiar activity, working towards a personal goal, whatever that may be, is what I want to encourage.

The non-profit that a few friends and I recently established (more to come on that on a future post) will be organizing the swim and raising money for our mission. If you’re interested in participating, you can join as a swimmer or non-swimmer (there are options to kayak, paddleboard, or just simply hang out, cheer and support), just comment on the post or contact me individually.

Because it’s in Donner Lake, near Donner Pass and everything else named Donner, the swim is the Donner Party Swim. For those of you not from Northern California who didn’t hear the story of the Donner Party pioneers (yes there was cannibalism involved) a thousand times as a child, educate yourselves here.

Before my injury, with a fully functional body, I could barely swim a quarter of a mile in the pool before gasping for air and calling it quits. Two years ago, I could swim no more than a couple hundred meters but only with a snorkel and many rest breaks. A year ago, I thought it would be nearly impossible to swim 2.4 miles in open water. Now, it’s time to work towards something much bigger and more challenging, to prove that I can do it, but also to remind myself that this will be just another step in my larger journey of recovery and reaching my ultimate goal.

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.

 

My TEDx talk

There’s no easy way for me to share this and not feel awkward about self-promotion so I’ll just come out with it.

Last month, I did a TEDx talk in front of an amazing audience of over 650 people. I was invited to share the story of my recovery thus far and how I’ve handled being dealt the most catastrophic hand I could ever imagine.

Quick recap on how I got here:

Last year, when I wrote my blog post about standing up and asking Brita to marry me, a random friend reached out and asked me to share my story at a technology conference he was organizing. While I’d always felt comfortable talking to people and presenting in front of small audiences, I had never done anything like that event, in front of 300+ CEO’s, venture capitalists, and business leaders. He gave me very little guidance and I still to this day have zero idea how or why he knew that I might do a half-decent job, but he trusted me fully and told me to give it a shot. So I got up there, told my story and then made way for will.i.am and his fireside chat (and yes it was deliciously entertaining to see a hipstered out rapper talk to a roomful of Silicon Valley investors and entrepreneurs).

My talk went over quite well and since then, I’ve been invited to do a number of speaking engagements including large and small conferences, corporate workshops and meetings, business events, and even a roomful of medical students who were on their way to being the doctors, prognosticators and hope providers (or deprivers) of tomorrow.

Although I was hesitant at first about sharing my story, mostly because I haven’t yet achieved my ultimate goal of getting back on my feet and didn’t feel quite comfortable sharing a story of a partially achieved objective, I got over that and realized that I really enjoy speaking to people. As a result, an incredibly generous and selfless friend who I’ve mentioned on this blog anonymously and who hates self-promotion as much as I do but who I will now shamelessly reveal because he’s an overly humble yet completely badass published author, conference organizer and entrepreneur, told the organizers of this particular TEDx event about me. The rest is history.

So here’s the video. Feel free to share as much as you’d like. If there’s one time I’d be ok to see social media saturated with something I did, it’s now. And yes I am interested in other speaking opportunities so please contact me if you have other ideas.

Stupid comments and positive outcomes

Recent conversation outside my local coffee shop. I’m sitting and chatting with my friend when a woman in her mid 40s, slightly disheveled but generally pretty normal looking, walks out of the café, stops in her tracks about ten feet away and addresses me:

 

Woman: Are you really in a wheelchair? Do you actually need it?

Me: Excuse me?

W: I’m just wondering if you’re actually paralyzed and if you need the chair or if you’re just using it, because…well…you know.

M: Um…do you really think I’d be in this damn wheelchair if I didn’t need to?

W: Well it’s just that you’re sitting with your legs sprawled open and you don’t look like you need to use that chair, so I’m wondering if you’re actually paralyzed.

M: Do you make it a habit of asking strangers such personal questions about their conditions?

W: Well, I know people who are actually paralyzed are usually very open about talking about these things and you just don’t look like you actually need a wheelchair. So, are you or not?

M: This conversation is over.

W: Well! I guess that answers that then, doesn’t it?!

M: You need to leave now lady.

 

She storms off, leaving me to wonder why she’s the one who’s agitated and exasperated.

***

In the time since my spinal cord injury, I have rarely, if ever, had any negative or insulting interactions with strangers in public. Initially, the fear of such an interaction terrified me. I was fearful of going anywhere in public, I was anxious about the looks I would get, the expressions of curiosity and bewilderment I would inevitably see on people’s revealing faces as they walked by me in the street, towering two feet above me.

But time and time again, I’ve been proven wrong. Ninety-eight percent of the time, I’m treated with civility, genuine greetings, and offers to hold the door open or move a chair out of the way to let me through. Of course, every single concession or accommodation that people make for me adds to my immense frustration at not yet being able to move freely on my feet, at eye level, where I want to be. Frustration aside, other than some confused, staring children who often don’t seem to know what to make of a guy in a wheelchair, I’ve become accustomed to cordiality and respect in public.

For that reason, I suppose I was due for a strange and unsettling interaction like this one.

I still hate everything about the wheelchair with the same passion and vitriol that I’ve had since day one. So naturally, I really dislike anyone noticing it or pointing something out about it. I continue to pray and hope for the day when it is a thing of the past and I won’t have to have this unwelcome companion with me at all times. That said, I’m not clueless, I realize that a society full of people who are upright and then a person who’s sitting down, rolling by is going to be noticed, but maybe because of the general progressiveness and open minded mentality of the people where I live, I don’t often have to worry about feeling too noticed for standing out, but of course this time it was different.

If the inappropriate and nosy questioning didn’t prove the nuttiness of this strange and sad woman, then my ensuing conversation with the cafe worker did. He came out, apologized for her behavior and said that she had ruffled some feathers with him as well when she purchased a pastry, ate some of it, complained about its price yet refused a refund, then continued to eat almost the entire pastry before returning to the counter and demanding a refund, which she was politely given. The point was proven: this person didn’t know how to interact with society and in the span of two minutes had angered a handful of people.

As she walked away, my friend (who has been a tremendous source of support and encouragement for me since my injury), instantly knew that I was on the verge of getting upset and deftly changed the course of my emotions. He told me that as crazy and weird as she had been, she was 100% right about one thing: I don’t look like I belong in a wheelchair. He said that he’s been noticing it for quite some time, that my overall health, confidence and increased strength make me look less and less like the vulnerable and weak person that I was not too long ago, and more and more like someone who’s about to jump out of the chair and start running down the street. He pointed out that I was sitting so unusually in the chair, scooted forward on the cushion with my feet on the ground and my legs comfortably spread apart, and the lady just didn’t know what to make of it.

I’m grateful for my friend for helping me take an awkward and potentially frustrating public interaction and treat it as a positive occurrence. In fact, within seconds of Mrs. Nuttipants’ departure, likely to annoy another self-respecting citizen or two, I had forgotten about the entire thing. I realize that had this conversation happened a year ago, I might have had a very different reaction but this time, I got the last laugh.

Standing in the Southwest

We all have sacred places, locations that have a strong link to our emotions and memories, that register some kind of greater meaning within us. One of my most sacred and favorite places in the world is the high desert plateaus and canyons of southern Utah and northern Arizona.

I first came to this region in 2005 when I was working as a trip leader for guests on biking and hiking tours and taking delight in seeing their faces when they experienced this truly special place, unlike any other in the world. It was always the same story, everyone signed up for the trip mostly because of the draw of the Grand Canyon. The other areas we would visit were usually more of an afterthought, an asterisk next to the statement of having seen one of the natural wonders of the world, or as us trip leaders would jokingly refer to it, “the biggest ditch in the world.”

The result was always the same. People usually hadn’t heard much about Bryce Canyon or Zion National Park (not to mention Red Canyon, the Kaibab plateau, Cedar Breaks and some of the other places we passed through), but once they saw all of it, they almost always admitted that the Grand Canyon was just a part of a truly spectacular area, and the other national parks would often cement their presence in their memories stronger than the big ditch.

I spent a good part of three summers in this area, visiting these parks over and over again yet I never got bored of the dramatic cliffs, canyons and geological formations. So it was only natural that when I found out that my fiancé had never been to any of these places, we decided to make a road trip out there. In order to make the long drive a little less painful, and to continue to explore our own state of California, we decided to throw in Death Valley National Park too, for good measure.

I wasn’t sure how I would react to visiting these places again after an eight year hiatus, and more importantly, now in a very different physical situation, where I wouldn’t be able to do the hikes I had done so many times or share my favorite peaks and viewpoints with Brita. What would it be like to visit my sacred place but without the physical ability to experience it as I remember? Was I setting myself up for disaster?

The answer, probably not surprisingly, was mixed. On the one hand, it was extremely difficult to be in beautiful and memorable locations yet constantly feel limited by where I couldn’t go, what I couldn’t see or relive again. On the other hand, I was able to share these places with Brita, to experience seeing them through her eyes and taking joy from that process. Not to mention that simply being in these places, with or without hiking and climbing up to the tops of the mountains, was soothing for my soul. At the end of the day, seeing the late afternoon sun shine on the massive, red, sandstone cliffs of Zion confirmed to me that I had made the right decision to come back.

For the last couple of months, I’ve been practicing standing up by myself, unassisted, in a walker and while it’s certainly not as effortless, long-lasting or smooth as I’d like it to be, it’s a measurable improvement from before. It was only natural then that throughout our road trip we would pull the walker out of the car, and I would rise to my feet and at least get a slightly higher view than from the wheelchair. While it wasn’t a replacement for the inability to go on a hike, and while I still long to climb back up to those peaks and descend into those canyons, it at least made it a tiny bit less painful and a whole lot more memorable. This sacred place remains sacred to me, and nothing that has happened to me physically can take that away from me.

Grand Canyon
Grand Canyon
Grand Canyon
Grand Canyon

 

 

 

 

 

 

 

 

Zion National Park
Zion National Park

A repetition is an event

“Remember Ar-aaaash, make every repetition a separate event.”

These were the words, expressed in his slow, charming Alabama drawl, of one of my trainers a while back during a rather challenging exercise. He was a corky guy, eccentric yet affable, and I probably only worked with him a handful of times, but he had an eclectic knowledge of the body and liked to share his experience which was largely based on his years as a professional body builder.

He said that when it comes to many repetitive exercises, most people think only about completing the desired number of repetitions. Instead of that approach, he suggested that it’s not important whether you’re doing six, ten, or twenty repetitions but that you shift the focus from the completion of the entire set to an intense concentration on each repetition as its own end goal.

Clearly, the idea of “making each repetition count” wasn’t a new one at all, but the way he expressed it, his suggestion to think of each as an “event,” resonated with me.

The reason I’m thinking, and writing, about this now is that I’ve reached a point now in my rehabilitation where this advice is especially useful. In the last couple of months, much of what I’m working on has been extremely specific, focused and calculated exercises targeting small muscles and newly established and still weak neurological connections. These aren’t movements I can just complete unconsciously or with minimal attention. Now, I have to concentrate more than ever to turn on certain muscles, turn off other muscles that want to take over and dominate the movement and give every ounce of mental energy I have to try to strengthen a dormant or underutilized neurological connection.

After all this time, it’s still really hard for me to describe what it feels like to deal with a damaged neurological system.

It’s not like anything I ever experienced before my accident. It’s nothing like being on a long run or bike ride and battling complete exhaustion to fight through to the end. It’s not like being in a weight room and challenging a previous feat by adding a heavier weight, gritting your teeth and muscling through the movement. Nor is it like getting into a challenging yoga pose and trying to contort your body into a pretzel-shaped position.

I have to concentrate so much more on each specific aspect of my movement because I’m not only engaging the muscles that I do have control of, but I’m trying to reestablish those damaged connections. That’s why treating each repetition as a separate event is such great advice. It slows the entire process down, demands tremendous brainpower and forces me to prepare, complete and analyze each repetition with focus and determination. I also like that it can be applied to any repetitive movement or practice, not just physical exercise and it allows me not to take any practice for granted. Slowing down and treating each repetition as its own event can only benefit my continued recovery.

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…