SCI Survey: Results and Summary

A couple of months ago, I wrote about my interest in finding out of the situation of other people who have suffered a Spinal Cord Injury and learning about their respective challenges as compared to mine by creating the SCI Survivors Survey. Thanks to a tremendous commitment of time and dedication by two friends (Laura and David, I’m so grateful for your help!), we were able to obtain incredible results from people’s experiences.

We’ve written a summary of the results and I wanted to share it here to continue the conversation and to highlight this too often underrepresented injury to those who may not know much about SCI. Thank you to everyone who openly and honestly responded to the survey and provided such an incredible wealth of information. And many thanks to everyone who helped in the process. I hope this can lead to some significant changes in how we deal with SCI.

SCI Survey Summary 

 As her fellow athletes recover from realizing their Olympic dreams, skier Maria Komissarova has just begun the hardest challenge of her life. The 23-year-old crashed during a practice run in Sochi[1], suffering a fractured spine that has paralyzed her from the waist down.

Komissarova now faces hardships unlike any she has ever faced. When the shock subsides, she will have to learn how to live day-to-day in her new condition while navigating a complex set of medical options. Her coach will be replaced by a spine specialist, her trainer by a physical therapist, her fame by a long and painful recovery that will be every bit as grueling as her Olympic training. State sports bodies and the Russian federation paid for her initial treatment but the federation says that the skier’s recovery may take a long time and extra money will be needed.

If an Olympic athlete needs to raise extra money for her recovery, what happens to people with a lesser public profile, who suffer similar devastating and life-altering Spinal Cord Injuries (SCIs)?

While Komissarova’s story has received press attention around the world, countless other SCI survivors (500,000 global cases a year[2]) struggle in anonymity to find answers to the physical, emotional, and financial struggles that now dominate their lives. Even though 12,000 people suffer SCIs each year in the United States alone[3], all too often, little is known about their plight.

Arash Bayatmakou wants answers. In 2012, the then 30-year-old San Francisco resident endured a horrific fall from a third floor balcony that shattered two cervical vertebrae and paralyzed him from the chest down. Despite being told by medical experts that significant recovery was unlikely and that he should accept his condition and adapt to life in a wheelchair, Arash remained determined to walk again and decided to make recovery, in his words, his “full-time job.”

The results have come slowly but steadily—improved hand and arm strength and dexterity, core strength, even a wiggling toe. Recently, Arash stood on his own for the first time since the accident. After proving the “impossible” to be possible several times on his road to recovery, Arash wants good information both for him and other SCI survivors.

How similar is his predicament to that of other SCI survivors? How many SCI survivors have been given little or no hope of recovery? How many are forced to pay out of pocket for necessities as fundamental as a wheelchair due to poor insurance? What are their experiences and how do they deal with this life-altering condition?

To find out, Arash, David Nihill and Laura Bekes put together the SCI Survivors Survey and the results show that his case is by no means the exception. While the severity of each injury is unique based on the extent of damage to the spinal cord (which controls all neural communication from the brain to the rest of the body), the potential effects are devastating as paralysis of the upper and/or lower body is almost always a result of the injury. In addition, some of the lesser-known, yet hugely significant, effects of SCI include impaired circulation and blood flow, loss of bladder and bowel function, changes in blood pressure, body temperature regulation, depression and a variety of other physical and psychological challenges.

With an injury as debilitating as this, the impacts are severe and detrimental to many aspects of the survivors’ lives, and many struggle to identify and access the resources they need to give themselves a chance at recovery.

There were 61 responses to the survey nationwide, with respondents of all ages (18-69 years old) and with injuries suffered as long ago as the 1970’s to as recently as 2013. Respondents were asked questions about their injuries, interactions with doctors and medical professionals, prognoses, attitudes and approaches to their recovery, experiences in and out of the hospital and rehabilitation centers, continuing therapy, financial impacts of the injury, and their current state.

To summarize the survey findings as briefly as possible: 1) It is very difficult to predict outcomes for people who have suffered an SCI; 2) Few people with SCIs feel they are receiving sufficient coverage from their health insurance for modern day therapy that could potentially improve their condition and help realize their recovery potential and; 3) Despite facing such difficult odds, the will to recover has led many people to challenge the expectations of their doctors and prove their prognoses wrong.

To begin with, almost everyone (83%) was given a prognosis of some sort, from an inconsistent variety of people including neurosurgeons, rehab doctors, nurses and physical therapists. The prognoses were given very shortly after their injury and/or surgery and the overwhelming majority (83%) were told that the possibility of walking was unlikely or impossible. This left few people hopeful for their chances of regaining function or improving their condition.

While the challenges that come with this injury are many (physical, emotional, financial, professional, etc.), one of the clearer findings from the survey was that many people reported doing better than what the original prognosis suggested would be achievable or possible. The degree of improvement ranged dramatically from some respondents claiming smaller yet significant physical changes (i.e. better upper body function, improved circulation, more stamina) to others who had major gains in lifestyle (i.e. increased independence, driving a car, maintaining a professional career, improved family and personal lives) to even those who had regained the ability to walk.

Struggles with insurance and the ensuing financial impacts were a common finding for many respondents. Specifically, despite facing an injury that leaves people unable to walk and paralyzed from chest or waist down, 18% did not have any of the cost for their wheelchair covered by their insurance. Upon leaving the hospital, 87% needed to make costly alterations to their home, 83% did not have help from insurance to cover additional at home costs/supplies (median of $3,600/year) incurred by the injury, and 44% had to turn to fundraising to help with expenses.

“They haven’t done anything more than the BARE minimum, they didn’t even pay for the wheelchair that they wanted me to spend the rest of my life in. They’re horrible, irresponsible, inconsiderate and inefficient. They should know that caring for me now and getting me better now would save them money in the long run but their approach to SCI is so antiquated and backwards.”

“I don’t think insurance companies understand the benefits… The true benefits… Of ongoing physical therapies for spinal cord injury survivors.”

“At the end of my stay (in hospital) I began to recover function of my legs. The rehab hospital requested more time from my insurance but was denied.”

The attitudes and approaches of doctors and medical professionals were often reported to be defeating and demoralizing. In fact, 67% of respondents said that their initial interactions with doctors did not leave them feeling hopeful for their chances of any kind of recovery. 63% of respondents were told to focus more on adapting to their injury than recovering from it.

“I told them I wanted to walk again and recover and they mostly laughed at me, dodged my question, didn’t give me answers and tried to just get me to focus on adaptation.”

“My prognosis doesn’t mean anything to me now as I know how flawed it was when they told me.”

 “I have recovered more than I ever thought. I can walk independently with [braces] and a walker. I was told I did not have enough function to ever do so.”

“Not going to ever walk again was my diagnosis, I am now walking.”

Despite the overwhelming physical challenges, the often less than optimistic prognoses, and the inconsistent attitudes and approaches encountered with medical professionals, the survey found that many respondents refused to give up hope for their chances for regaining function. 80% took part in some kind of ongoing rehab or therapy beyond initial inpatient rehab even though 74% did not have this therapy paid for by their insurance. 100% found this therapy to be beneficial (in a number of ways) including 51% who said that this therapy had reduced or eliminated their need for medication and 57% who reported that ongoing rehab or therapy had helped improve secondary conditions that come with SCI (e.g. blood pressure, bowel/bladder function, and Autonomic Dysreflexia).

“I needed much more therapy for many hours at a time. It wasn’t even close to giving me what I needed. I feel like my insurance pretty much gave up on me.”

“I have gone from wheelchair with no movement against gravity to standing, to walking with a walker (5 months), to forearm crutches (8 months), to unassisted (18 months). My rehab has helped me get stronger and push my life on my feet which has lead to more improvement.”

The survey confirmed a significant finding from previous research conducted by the National Spinal Cord Injury Association[4] in which a majority of respondents were told to exercise by their physicians but did not have access to a trained therapist and did not receive specific instructions regarding the kind of exercise to engage in or how often.

Overall, the SCI Survivors Survey provides some valuable information about what people go through following this life-changing injury, but it also raises a number of questions that are especially relevant now, with so much of the national conversation centered on healthcare.

Why is treatment of SCI not utilizing newer, more progressive treatment options more often? Even though the number of people who regain the ability to walk is small yet significant, why do medical professionals consistently frame the prognosis in a negative way and choose to tell people that they won’t get back on their feet? Why don’t they admit that they simply can’t predict outcomes and encourage people to work hard to try to reach their potential? Why are insurance companies not stepping up to the plate in providing better therapy options that can minimize secondary complications and prevent future hospital visits, and the exorbitant costs associated with them? Why does insurance appear to pay for continuing medication but all too often refuses to pay for more exercise or therapy that can reduce or eliminate the need for medication? How are people meant to deal with the financial impact of the injury if something as fundamental and necessary as a wheelchair is often not paid for by insurance?

The survey results suggest that the entire system of treating SCI is insufficient for helping SCI survivors maximize their chances for recovery, and in need of significant change. Because of the many complications and health needs that arise from a Spinal Cord Injury, SCI survivors develop a number of continuing medical needs from their respective healthcare providers. In a time where healthcare is a primary issue for many people, it’s important to think about how to help people who suffer this injury to live healthy and productive lives, with access to a healthcare system that is balanced in providing necessary and effective services while maintaining an efficient and financially sound system.

Arash, like so many other SCI survivors refuses to give up hope, drawing inspiration from the many people who have recovered to levels greater than anticipated. Like a number of respondents in the survey, he has to rely on sources and support outside of what his insurance has provided him in order to maintain his aggressive therapy schedule and to achieve his ultimate goal, to get back on his feet.

On March 20th, Comedy for a Spinal Cause will be hosting a standup comedy show in San Francisco showcasing local comedians with all proceeds benefitting Arash and his recovery. Find out more and purchase tickets here.


[3] U.S. Centers for Disease Control and Prevention

http://www.cdc.gov/traumaticbraininjury/scifacts.html

A milestone

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

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

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

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

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

The SCI Survivor Survey

What does it mean to survive a Spinal Cord Injury (SCI)? What systems are in place to assist and support SCI survivors days, months and even years after their injuries? How do SCI survivors deal with the many life-changing challenges they face following this injury? What are those challenges and, most importantly, what can be done to address them in order to help and improve the lives of those of us who have dealt with this injury?

All of these, and many more, are the questions that the SCI Survivor Survey seeks to explore.

A little background: After my own frustrating experience with the availability (or lack thereof) of resources, support systems and options for recovery in the initial weeks and months following my accident, I decided that at some point in the future, I would want to do something to help other SCI survivors. When I heard the experiences of others, I was simultaneously horrified – I couldn’t believe how consistently various people in the medical system were discouraging and reluctant to provide hope to these people and their families – and relieved – because I learned that I wasn’t the only one out there facing these frustrations and challenges.

Recently, a couple friends and I started discussing what the biggest challenges are for SCI survivors and brainstorming the most helpful solutions. They knew my story – after all, they had been there to support me from the beginning – and I had a sense of what those challenges were based on the anecdotes I’d heard from others. But we decided that before we could explore the idea further, and in order to have a more accurate understanding of the most beneficial potential solutions, we wanted to hear from more SCI survivors. Thus, the SCI Survivor Survey was born.

Our goal now is to get as many responses as possible from anyone who has suffered a Spinal Cord Injury. The survey is purely informational and completely anonymous. All questions are optional and the responses we get will only be used to shape the direction of our efforts and guide our primary objective: to help as many SCI survivors as we can.

So in case I haven’t made it clear yet, I’m asking for your help! If you are an SCI survivor, please fill it out yourself and share it with as many other SCI survivors as you know. Otherwise, please forward, email, link, send, snail mail, tweet, carrier pigeon, make smoke signals, use morse code, talk through tin cans, and share the following link with someone has dealt with SCI. I’m grateful in advance for your help and promise to keep you updated on the progress of our efforts.

SURVEY LINK: http://bit.ly/1hf7TcC

Making Magic in Maui (continued)

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

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

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

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

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

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

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

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

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

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

Making magic in Maui

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

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

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

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

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

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

One in a million and a trip to SoCal

One in a million. Those were the odds that were given to Aaron Baker for his chances to ever feed himself again. Aaron suffered a Spinal Cord Injury similar to mine 14 years ago and these were the words that his doctor told his mother. Nothing about walking, nothing about standing up on his own, or even pushing himself in a wheelchair, but just simply his chances for feeding himself.

In my last post I shared the new page on my blog highlighting the stories that are inspirational to me and front and center among those is Aaron’s story. Through years of hard work and unwavering determination, not to mention incredible support from his mother and community, Aaron slowly regained control of his body and was able to fight his way back to his feet, and to his bike! A formerly sponsored motocross racer, he traded his motorized dirt bike for a road bike and ended up crossing the country twice, riding over 6,000 miles to share his story and raise awareness about SCI. Now he has opened a rehab gym north of Los Angeles with the intention to help as many other people with SCI and other injuries as possible.

I bring this up not only because of the continued inspiration I get from Aaron’s story but also because after speaking to him on the phone and learning more about the methods that he used for his recovery and his amazing, one-of-a-kind therapist Taylor (a kinesiology mastermind who now runs the therapy program at Aaron’s gym), I’ve decided to take a short break from my typical schedule and come to Southern California for a few days to mix things up again. I’ve mentioned how helpful it is for me to change my patterns, go somewhere new, meet new people and have different people work with me so that’s what has brought me here.

I could not be more grateful for this opportunity to come and meet people who in my eyes are like superheroes. I see people like Aaron, Laquita (his mother), and Taylor as beacons of shining light amidst a pervasive darkness in the SCI recovery world. For every one like them there are too many other people who say that to not get used to this “disabled” reality is to do yourself an injustice and to put “unrealistic” dreams of recovery to the side and move on with life. I’m honored to have this opportunity to meet these incredible individuals and I’m looking forward to sharing my experience with them in my next post.

My 15 minutes of fame

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

The friendly Brits setting up at my house

The friendly Brits setting up at my house

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

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

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

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

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

Ekso-skeleton walk

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

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

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…