Category Archives: Treatment

Ekso-skeleton walk

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Step into a suit, strap in, stand up, and walk. That’s exactly what I did last week for the first time. I had heard a lot about the exoskeleton made by Ekso Bionics, especially from a number of other people with Spinal Cord Injuries, and I had been interested in trying it out for myself. Finally, after many weeks, it was time for me to try one of the most novel and innovative forms of treatment for SCI.

Like so many cutting edge technology companies, and fortunately for me, Ekso Bionics is based in the Bay Area, just 15 minutes from my home, in a spacious, futuristic, movie-set-like warehouse where they do everything from design to marketing to engineering to manufacture of this incredible product. Upon entering Ekso, I had the immediate sense of being surrounded by scientific intelligence, and the feeling that big things were happening here. You’re welcome to check out their website to learn specifics but the very brief overview of Ekso is that they’re basically split into developing two types of Ekso Bionic Suits: one for rehabilitating people with SCI and other disabilities and the other for military purposes (an able-bodied person being able to wear the suit and carry hundreds of pounds of weight on their body). Both purposes serve to advance their mission of developing “the most forward-thinking and innovative solutions for people looking to augment human mobility and capability.”

After conducting an evaluation of my physical condition, including precise measurements of my legs, hips and feet, it was time to try it out. It only took a few seconds to strap me in before I was standing upright in the most effortless way I had experienced since my accident. Usually, when I do standing or walking exercises, I have to support much of my weight on my arms and shoulders but with Ekso, this wasn’t the case. I felt upright and fully supported, yet agile and light.

So how does it work??? There are no electrodes or implants or anything that complicated. Basically, to take a step, I put my weight into one leg and lean in that direction and once I pass that “sweet spot” where my balance has shifted but I’m not falling or swaying, the opposite leg will take a step. The suit has sensors in my feet recognizing how much weight is in each foot, so to step again, I lean on the opposite leg and again, as soon as I pass that threshold where enough weight is off the back leg, it takes a step. I started with a walker in front of me to support me but quickly moved on to using crutches which was a bit more tricky at first but easier once I got the hang of it. It didn’t take long to figure it out, so much so that after a few laps, I asked the guys when I could start sprinting with the suit.  :)

After more than an hour of standing and over twenty minutes of walking, I barely felt fatigued. Post Ekso statsWhile the process of walking feels a bit unnatural (you really have to lean pretty far in one direction to make the opposite leg to take a step), the ease and smoothness of walking with Ekso is an unmatched feeling. Thankfully, as an Ekso test-pilot, I will be able to use the suit again and help them as they continue to develop and improve their product.

Much like another incredible piece of equipment that I used recently (the lokomat), Ekso is a marvel of human engineering, designed so precisely and carefully that it will undoubtedly be a pioneer in the field of SCI rehab. I’m thrilled to be a part of the Ekso community and will post and update my progress as I continue to work with them and walk in the suit.

Utah Rehab Update – Water Therapy

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I wanted to send out another update from my therapy at Neuroworx in Utah. I’ve been interested in doing water therapy in a pool for quite some time now as I’ve heard from other SCI patients of how much they enjoy it and how much it’s helped them. While it’s possible to jump into a normal pool, the ideal therapeutic water therapy pools have  the following elements:

  • A small pool (about the size of two hot tubs) that is relatively shallow (4-5 feet deep)
  • Jets for resistance and swimming exercises
  • Very warm temperature – almost like a hot tub since SCI patients have a hard time regulating body temperature, a traditional pool may be too cold
  • Floating devices and exercise equipment that is useful in the pool
  • Underwater parallel bars and treadmill
  • Physical Therapists and/or trained staff

Interestingly enough, I found a place not far from my home in California that has a therapeutic pool with all of these features but my pathetic excuse for health insurance has denied me for this therapy, even though my Rehab doctor and my PT referred me for it and said it would have many benefits for my recovery. My insurance states that because I can do land therapy (which they’re not providing or paying for either), there is “no medical need” for water therapy. As frustrating as that had been, I was thrilled when I found out that I was going to be able to experience water therapy during my time in Utah.

I ended up having water therapy every other day and I really enjoyed it. There is something fantastic about taking gravity out of the picture and feeling the weightlessness of my legs in the water. I did some exercises targeting my abs and core that were similar to movements that I would do on land, but the water allowed me to push my limits a bit more and not worry about falling face first into the ground.

Abdominal/core exercises – these are much harder to do for me than it may seem due to my weak abs. Also, notice the screen in front of me showing the underwater camera shots of my legs:

I also spent about 15 minutes just swimming against the jets in order to get a cardio workout and have full body exercise:

I hope this gives a good sense of some of the different therapies I’ve been doing and why I’m so grateful to have had the opportunity to do all of these things under one roof and under the eye of an incredibly talented and knowledgeable staff. My time at Neuroworx was very well spent and I’m excited about taking the lessons I learned back home and applying them to my continuing rehab.

Utah Rehab Update – The Lokomat

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I wanted to send out a quick update on the rehab I’ve been doing here in Utah. I’ve had a great time here so far, meeting the inspirational founder of this facility and a fantastic group of physical therapists who are some of the most knowledgable and experienced professionals in the field of Spinal Cord Injury Rehab. It’s also been great to meet some other SCI patients, all at various stages of recovery and some even on their feet, walking independently.

I always said that I didn’t care if I never met anyone else with my level of injury who had recovered, because I would still push myself endlessly to reach my goal, but I must admit that it’s relieving, motivating and inspiring to meet other people who broke the same vertebrae as me and are back on their feet. That said, one of the things I’ve learned here is that no two SCI patients are the same. Even though I’ve met a number of people here with the “same” injury as me, there are many unexplained phenomena in terms of each person’s respective challenges and their prospective recoveries.

Ok so let’s get right to the fun stuff. I’ve been able to do some new exercises and use state of the art equipment that I had not previously tried which has been pretty fun.

You ever wonder what one $350,000 piece of equipment looks like??? Well let me introduce you to the Lokomat:

This is a revolutionary machine for SCI rehab as it’s adjusted to the exact length and size of my legs not to mention that everything – from the amount of weight I’m bearing through my legs to sensing how much effort and movement I’m giving to the walking – is precisely measured and captured in a computer. Nearly everything can be adjusted and tweaked to suit the particular person and well, it’s just pretty damn cool. Yes I do look a bit like Robocop walking but it feels amazing to stand upright and have such a natural stepping feeling for the first time since my accident.

One more video, just to show you a different perspective. Here you can see two important things: 1) the screen in front of me which is basically a virtual reality depiction of me walking and my movement is reflected in the digital game 2) the mirror below the screen, showing my legs walking:

There are only a handful of these Lokomats throughout the US so I’m very fortunate to have access to this one while I’m here in Utah. Stay tuned for another update soon…

A much needed change of scenery

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After months of the same routine, of going to the same places on the same days and feeling trapped in redundancy and “Groundhog Day” syndrome (you’ll have to see the movie if you don’t know what I’m referring to here), I decided to shake things up a bit. I’ve come to Salt Lake City, Utah for two weeks to try a different rehab center and to see what kinds of ideas, practices and exercises I can learn from their experienced team of therapists and SCI professionals.

I have to explain how important this change is for me. For years, I travelled frequently all around the world, mostly for work but also for pleasure and before I could get too bored or accustomed to any one place, I was on a plane to a different destination. Even when I was living in one place and leading a less itinerant lifestyle, I was constantly taking weekend trips to the mountains, camping, hiking and exploring the natural outdoors which I love so dearly. So adding to the long list of physical challenges from my accident is the challenge of routine and boredom from doing the same thing over and over.

Over the last few months, as so many of my friends travelled to different destinations and shared their excitement either directly to me or indirectly through Facebook and social media, I had to quietly hear them and fight the envy and jealousy I felt and battle the frustration of not being able to travel myself. In fact, before my accident, I had booked a trip to Lebanon and I’d tentatively scheduled a hiking trip to Patagonia. All of that went out the window. Now, while Utah isn’t a new place for me (I used to work here quite a bit), it’s the break from routine that I’ve been waiting for and I’ve come to Neuroworx to make the most of my experience.

Neuroworx is a non-profit founded by a man who suffered a bad cervical Spinal Cord Injury himself. He was a practicing doctor, with a family and a successful career and, as I know from my own experience, his entire life turned upside down in one instance. (You can read his story here, very inspirational) Although he had trampolines his entire life and had used them for years, his accident occurred on his trampoline in his own backyard. Being a physician, he knew almost immediately that he had suffered a Spinal Cord Injury and so began his own recovery.

Being told he would never walk again (sound familiar??) he teamed up with an incredible physical therapist who worked with him and helped him recover. Now, while he still deals with many of the challenges of SCI, he is walking and has recovered tremendously. That physical therapist became his partner and she is now the head PT at Neuroworx, coordinating the regimens of the many patients who come through their doors.

I’m excited for this change and will try to post a couple updates from here. Now it’s time to enjoy the mountains and the break from routine.

Video Update – Parallel Bars Walking

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

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

Don’t sweat the sweat

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For the first time since my injury, I broke an actual sweat a couple days ago. My arms were moist, my chest, neck and upper back were a little wet and I could actually wipe off some sweat off the top of my head that was slipping out under the acupuncture needles that were buried into my scalp.

Why am I pointing this out you may wonder?

One of the many less noticed but still significant aspects of my Spinal Cord Injury is the effect on body temperature, specifically the lack of ability to sweat. It’s not something that people think about very often, but sweating is extremely important in maintaining body temperature and cooling the body down when it starts to heat up. The nerves that control the ability to sweat are affected by the damage to the spinal cord, particularly in an injury like mine, high up in the spine in the cervical vertebrae.

I first noticed the challenges of not sweating just three months after my accident. On an unseasonably hot day in early October, I was enjoying a rare outdoor lunch, sitting in the sun in a beautiful park when after only a few minutes I started feeling very hot. I touched my head and face to check for perspiration but to my surprise, my skin felt as dry as leather. Not one bead of sweat. I stayed a bit longer only to find that I was unbearably hot.

I have to take a quick break from the story to explain how unusual this was. Before my accident, I LOVED being in the sun. Thanks to my ethnic heritage and my quick tanning skin, I’ve been able to avoid getting sunburned for most of my life. I would lay on the beach in direct sun for hours and hours, I was the guy at the restaurant who didn’t want the table in the shade, and I suffered immensely when I had an office job and had to accept being inside on a bright, beautiful sunny day. So to be overheating after only a few minutes of sunshine was an entirely new experience for me…

I cut the lunch party short and moved to the shade to escape the sun, with the hopes that I would cool down and continue my outdoor picnic. While it definitely felt better in the shade, I found that I just couldn’t bring my body temperature down. I started getting more and more uncomfortable and eventually decided that it was time to go. Sitting in the car as we drove down the hill, I checked myself for any sign of sweat again. Nothing. It only took me a few minutes to realize that I had to do something. We stopped the car and I poured two full liters of water over my head and body, right there in the passenger seat of the car effectively drenching the car seat and dashboard. Ahhhhh relief, finally. Luckily, my body temperature did come down but I learned that the lack of ability to sweat was something I had to be aware of in future situations.

In the months since this incident, I’ve had many intense workouts. I’ve challenged myself physically in novel ways and have pushed my limits on numerous occasions. Yet, despite these exhausting workouts, I’ve only had a few little drops of sweat making a cameo on my body before they disappear again. So to finally have a moment where I actually broke a sweat that lasted more than a few seconds certainly felt like a small triumph. The problem certainly isn’t solved and I’m not sure how soon I’ll get back to being my previous comfortably-sweating-during-physical-activity-yet-not-embarassingly-so self but at least it’s a start. I hope to be drenching many a exercise mat quite soon with my perspired goodness. Yup, that just got said.

FES Bike Riding

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

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

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

Riding the FES Bike

Riding the FES Bike

My story on the Huffington Post

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I’m frequently overwhelmed with the amount of information that we have access to these days. Countless websites, social media sources, plus 1s, “likes”, reviews, surveys, posts, tweets, tags, and beyond. But there are moments, like now, when I feel so lucky to live in a time with so much connectivity and communication with others around the world. I was recently contacted by another blogger Arthur (link to his blog) who has written a book and deals with his own recovery and medical challenges. After a few back and forth emails sharing our respective stories, he mentioned the chance of getting our frustrations with the US medical system out to mass media. Thanks to his contact at the Huffington Post, they wrote an article about the shortcomings of healthcare and sited my story and his in the article.

http://www.huffingtonpost.com/gregory-g-allen/its-time-congress-stands-_b_2563497.html

I am just one of thousands – if not millions – of Americans who feel abandoned and shortchanged by the inadequacies of profit based insurance companies that run healthcare in the US. I would be honored if you can read the article and share with your respective communities. Thank you in advance, and to Arthur in particular.

“As independent as possible…”

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If there is one phrase I’ve heard entirely too often during my recovery it’s, “We have to get you to be as independent as possible.” This may not sound so bad at first. Why wouldn’t I want to be independent? Is there something wrong with taking a situation in which almost everything I do involves help from someone else and empowering me to do things more independently?

Now I have to provide some context so you don’t think I’m just being hyper sensitive or overly scrutinizing of a seemingly simple statement. The entire seven weeks I was in the hospital I would hear nurses, doctors and therapists say this to me, usually as a way to motivate me – as if I needed extra motivation – to learn a particular skill or maneuver. Just days after suffering the most horrendous injury that debilitated me to an unthinkable extent, I was being told and retold that my “independence” (can you sense my sarcasm??) was hinged on the need to move my body a certain way or learn a seemingly impossible task. For example, before I could achieve any basic efficiency with my hands (unable to hold a pen or cup) I was being told, almost threatened, that I should try really really hard to do a particular thing because I had to be “as independent as possible”.

On my first day of rehab, just ten days after my injury, I was asked if I had thought about what my goals were for rehabilitation. I simply responded, “I want to walk.” Once I saw the quizzical expression on the practitioner’s face, I followed up with, “Look I understand this is going to be a long road but I can’t think of anything else that would motivate me so tell me what I need to do to get me closer to my goal of walking.” More confusion on his face. It was as if I was speaking Mongolian or stating that I wanted to flap my arms, spin around three times and fly to Saturn. I think they expected me to say that my goals were something like wanting to sit up without falling over or feeding myself or rolling over in bed or strengthening my arms enough to lift my body from wheelchair to bed. The truth is I badly wanted to do all of those things! But here’s where it gets tricky, and where I start to get frustrated with the way Spinal Cord Injury (SCI) is treated in our medical system.

I learned that until 10-15 years ago, someone who suffered a SCI would stay in rehab for months at a time. But now, insurance companies recognize the exorbitant cost of keeping someone in the hospital that long, not to mention the hours of physical and occupational therapy involved, and the model has changed dramatically. Most patients in this well-known rehab facility I was in (treating SCI, stroke, brain injury, and other serious neurological injuries) averaged 2-3 weeks in rehab. I was one of the “luckier” patients because I stayed for five weeks. In fact, my discharge date from rehab was determined just three days after I arrived! Let me recap: just days removed from seven hours of spinal surgery, after arriving in an ambulance with towels and tape strapping my head down and protecting my badly damaged neck, unable to move most of my body or perform everyday functions, the medical insurance system had the magical ability to set a date to get me out of the hospital. Now it all makes sense…

Becoming “as independent as possible” had little to do with my goals or long-term recovery. Rehab was meant to be a boot camp of sorts for me to obtain the minimal strength and capabilities to go home and not be a swaying, falling, broken, soaking wet mess of humanity. In a country abundant with bogus lawsuits and fervent medical malpractice scandals, the priority of my medical insurance wasn’t to heal my body to its greatest capacity – they had experienced, knowledgable therapists and state of the art equipment after all – it was to protect their legal liability and preventing me from saying that they didn’t teach me how to move from my wheelchair or wipe my own ass.

Moreover, rehab isn’t about rehabilitating the body to what is realistic or what one may desire. It is about functionality. Everything they taught me was with the purpose of how I could function when I wasn’t within the safe, happy walls of the hospital. Every time I brought up the idea of a full recovery, I was given the same quizzical look I saw that first day of rehab. Each time I mentioned that I was going to walk, I was politely dismissed and told to focus on my task at hand. Since I left the hospital, I have been given a grand total of ONE hour a week of physical therapy. Oh wait, actually it’s technically 45 minutes but sometimes she does me the favor of staying with me for an entire 59.824 minutes before scurrying off. And each time I see her the focus continues to be on function – not rehabilitation – and I’m continuously told to learn to be (you guessed it) “as independent as possible…”

Why I shouldn’t be thankful and why I still am

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On the eve of Thanksgiving, a day in which we’re meant to consider being thankful, it’s somewhat instinctive for me to think that there is very little for me to be thankful for right now. Why should I be thankful? I’ve suffered a horrific accident that has left me incapable of doing so many of the things I love. My life has been turned completely upside down at a time where I should be harnessing all the intellectual and creative potential I have in a professional way. I’m regrettably not getting on any planes or visiting any friends or family in a faraway place, because the logistics of long distance travel are too much to handle.

But as tempting as it is to get caught up in the negativity and think about why things suck so much right now (because honestly, many things really DO suck now), I’d rather think about the following list of just a few of the things I’m extremely thankful for despite my current condition.

Why I’m thankful:

  • I have improved every single day since my accident and will continue to do so in some way
  • My brain function has been unaffected by this accident. I have all the cognitive and mental capacities I’ve always had
  • I can still drink coffee
  • I am reminded everyday of the many people in my incredible community of friends and family and all they’re doing to help me
  • I couldn’t ask for a better family
  • My hands are strong enough to at least somewhat prepare and cook the turkey, and my intense exercise allows me to be hungry enough to eat all my Thanksgiving favorites
  • I can go outside and enjoy the sunshine and fresh air
  • My scars are pretty badass