Ekso-skeleton walk

Posted on May 20, 2013 by arashbayatmakou

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. While 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.

Scared of stairs

Posted on May 9, 2013 by arashbayatmakou

One inch. That’s all it takes to stop me in my tracks, bring my wheelchair to an instant halt, and fling me forward and potentially face plant on the ground. In those first few weeks after my accident, while I was still in the hospital and learning how to maneuver myself in this rolling contraption that I hate so much, going over the smallest bump or gap would send shooting pain through my neck and spine. Just getting in and out of the elevator or the front door of the hospital to get some fresh air was an adventure as I could feel every jolt through my entire body and I would beg whoever was helping me to encounter these tiny bumps or rises as if I were off-roading over huge dirt mounds.

I’ve come a long way since then with my wheelchair as I no longer have much pain, but as I’ve gotten stronger and more able to go to new places, I’ve become more aware of where I walk…I mean….roll. Considering how much I already hate being shorter than everyone around me because I’m always sitting (see a previous post), it’s frustrating to have to always keep my gaze at the ground and be on guard for any change in surface that will maintain my safety.

As a healthy and active person before my accident, I never thought twice about the entrances to homes, stores or restaurants. I lived on the top floor of an old San Francisco Victorian, with a bunch of stairs and no elevator. Many of my favorite restaurants and bars were situated at the top or bottom of a narrow flight of stairs. In a city where space is scarce and any kind of real estate costs a small fortune, there are few residences that are accommodating to someone in a wheelchair. As a result, to this day I can rarely visit my friends in their apartments or homes. “We’d love to have you over but we’re not sure if the stairs are doable” is something I hear frequently. To my friends’ credit, I have been able to bypass some seemingly sketchy entrances with some creative use of plywood ramps combined with some strong bodies pushing, pulling or even carrying me Cleopatra style.

I constantly fantasize about how monumental it will be for me to just make that first transition out of this wheelchair. Even if I have to use a walker or crutches, having the ability to go up a stair or two will open so many doors for me (literally and figuratively). I’m sick of always worrying about the smallest bump in the sidewalk or an elevated driveway or the unexpected stair and thinking how exactly my wheelchair and body would travel through the air if I were to encounter these foes without the utmost caution.

It is the biggest understatement when I say I can’t wait until I begin to get out of the wheelchair, which I refer to as my savior and worst enemy. I know I need it for now but I like to think that my hatred for it, combined with my love and driving desire to stand and walk, will lead to an imminent change in how I get around, and will lessen the feeling of being scared of stairs.

Another dose of perspective: handling my hands

Posted on April 18, 2013 by arashbayatmakou

We all take our hands for granted. There. I said it, and I really mean it.

I have written about a lot of my different physical and mental challenges here, but I have yet to dedicate an entire post (or more) to one of the most devastating aspects of my Spinal Cord Injury: my hands. Take a moment and just think of the small, fine movements you use your hands for throughout the day. Examples:

Unscrewing a cap of toothpaste; splashing water on your face, squeezing shampoo into your hands, buttoning your shirt, zipping a jacket, tying your shoelaces, fastening your belt, unscrewing a jar, peeling open that annoying thin aluminum wrapper that always rips on a small container of yogurt, pouring milk into your coffee, eating with utensils in both hands, grabbing your keys, locking the door, turning on the ignition in your car, pulling a credit card out of your wallet, handling cash, signing a receipt, and on and on and on…

Every single one of the functions and movements I described above are significantly impaired for me because of weakness in my hands and fingers. Some of the things I listed are still nearly impossible for me (squeezing shampoo), a few have become easier and more routine (signing a receipt, unscrewing toothpaste), and some I can do decently, just more slowly and weakly than normal (tying my shoelaces, buttoning my shirt).

I have become entirely accustomed to not trusting my hands. I am constantly dropping things on the ground. I still can’t hold my laptop or a heavy book with one hand. I am patiently waiting for the day that I can hold a plate of food comfortably without feeling like I’m lifting a 100 pound dumbbell. Opening packaging or a wrapper on everything from a pack of gum to an envelope is still a massive challenge and I’m stuck asking for someone’s help much more frequently than I would ideally like. I have to sleep with a bulky splint on my hand to help my fingers extend and open and feel more limber the next day.

Now I’ve only discussed basic yet necessary tasks and movements for everyday function without even mentioning maybe the most disturbing and frustrating aspect of my injury and its effect on my hands. Put aside for a moment the obvious challenges of someone outdoorsy and active like me who cannot walk or run or hike or do any of the active things I love to do. Let’s accept how excruciating it is for me to be cooped up inside on a nice day when I’d normally be riding my bike or playing soccer in the park. The two “indoor” activities that I enjoy the most, activities that are just as important in defining who I am and what I love to with my time – playing guitar and cooking – have been taken away from me. When I tell people that this is the most humiliating and debilitating injury I can think of because of the number of ways it affects me, THIS is what I mean. Cooking a big dinner for friends or having a lively jam session were fundamental elements of my personality, and now I can’t even do these. This is why it feels like almost my entire identity has been crushed by my Spinal Cord Injury.

I have zero intention of turning my blog into a whinefest to complain to the world about my problems, so I’ll express the entire motivation and reason I’m writing this rant: I am extraordinarily lucky to have the function I have. Even I, in this state of constant frustration and recovery, feel incredibly fortunate for the strength and abilities I DO have in my hands.

Breaking my C5 and C6 vertebrae in my neck would typically mean that I have limited range of movement in my shoulders, weak biceps, floppy wrists with almost no strength to bend or extend them, little to no function in my fingers and hands, and significantly weakened triceps. Most of the other people I’ve met with my injury have had a much bigger struggle with their hand function. It’s one of the first things other SCI patients quickly recognize when they see me. “Dude, you’re a C5?? Your hands look pretty good…” No one knows exactly why my hands were spared some of the damage and it just continues to prove how mysterious and misunderstood this injury is.

Now if this isn’t amazing perspective, I don’t know what is. Every time I want to complain about not being able to strum my guitar, write music or chop onions as quickly and ably as I used to, I think of how much worse it could be and how lucky I am to at least have the function that I do have in my hands. I admit, I work extremely hard on my hands, at least 2-3 hours a day doing various stretches and exercises (like typing) that have helped me tremendously. To finish on a positive note, I want to recognize a few of the small accomplishments with my hands in the last few months: I can type at almost the same speed I used to, flossing is effortless, I can hold my chef knife and chop much better than before, and I’m trying to fulfill my musical desire by learning the piano. Here’s to continued improvement with my hands, to us all recognizing how amazing our hands are and not to take them for granted.

Utah Rehab Update – Water Therapy

Posted on April 10, 2013 by arashbayatmakou

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.

A much needed change of scenery

Posted on March 26, 2013 by arashbayatmakou

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.

Flash Forwards

Posted on March 22, 2013 by arashbayatmakou

I’m boarding a train in a foreign country. As I scan my ticket to confirm my destination and its tricky spelling, I sling my backpack over my shoulder and step high up onto the train as it starts to rumble out of the station.

I’m walking through my old San Francisco neighborhood towards the tall trees of Golden Gate Park swaying in the gentle but persistent coastal breeze. I see my old neighbor on his way to work and wave at him as he walks on by and greets me from across the street. “Been a WHILE since I seen you man! How ya doing?”

I swing open the door to the restaurant and hurry excitedly up the narrow stairs. I enter into the dining room and see my friends gathered towards the back, ready for the birthday celebration. I can’t help but notice the tantalizing cocktails neatly handwritten on the chalkboard behind the bar. I decide that after months and months of preserving my recuperating nerve cells by avoiding alcohol, it’s time to order a drink…

We all know what flashbacks are, memories from the past of a specific moment that we remember clearly that are brought back into present consciousness. Similar to flashbacks, I have “flash forwards” that I’m sharing here now. Much like flashbacks (which we remember for certain reasons), my flash forwards are complex, rich in detail and as vivid as any memory. Thinking of them places me in those exact moments, my senses come alive with what I’m surrounded with and I feel as though I am experiencing that moment in real time. My smell (the sense that is most linked with memory) is heightened with the scents that I take in and I can realize the absolute realness of my flash forward.

Having studied psychology in university and always being interested in how the brain functions, I have read a lot about the damage and difficulty of painful flashbacks for some people. With or without a trigger, someone may relive a particularly challenging memory and become traumatized by the larger impact of that flashback. It’s not to say that all flashbacks are negative memories, far from it in fact, but I suppose I just don’t hear of many people talking about their flashbacks of positive memories very often.

My flash forwards are incredibly helpful for me. They fuel my recovery, they give me something specific to work towards, and they represent a light at the end of the tunnel in some ways. They show me what life can look like when I’m not on the dark side. They provide specific details of situations that I can’t presently experience. They remind me of what is most important to me and why I’m fighting so hard everyday to regain the physical abilities that I lost in my accident. Instead of trapping these experiences into history and saying that they’re a part of a past that I won’t ever see, I place them in front of me, in my future, with the utmost intention of realizing these flash forwards.

They are NOT wishes, they are NOT dreams, they are NOT aspirations or hopes. For these reasons, I can’t tweak them and change them around as I see fit. Much like memories which are based on facts of how things happened, flash forwards are structured the same way, as inherent truths, based on facts of how things WILL happen. That’s why they come to me organically and vividly and I have little control of how I see them. I just choose to accept them and see them as a glimpse into a definite future.

I’ll leave you with one more flash forward. As I have mentioned on this blog, just three days before my accident, I had one of the most amazing experiences of my life on a backpacking trip in the mountains with friends. For months, I have struggled many times wondering if I will ever have an experience like that again, if I’ll ever feel the joy of carrying all of my material needs on my back and venturing into the beauty of the high mountains…

The weight of my backpack feels heavier than it used to on previous trips but here I am again slowly hiking up the narrow trail surrounded by the majestic Sierra Nevada mountains of Eastern California. I’m definitely putting more weight on my hiking poles than I was expecting but I’m still stepping up the gravel path in anticipation of the alpine lake at the top. My steps are a bit crooked as it becomes apparent by looking at my footsteps that my left leg is still a bit weaker than my right, but I feel strong nevertheless. The air two miles high is thin and cool and I’m panting regularly but the sun radiates through my entire body, warming me through from the inside. I’m enjoying each step I take in my rugged hiking boots and I smile and realize I never knew that this moment would come again.

Compounding challenges of a cold

Posted on March 14, 2013 by arashbayatmakou

A cold is no fun for anyone. I recognize that. Who wants to have any portion of their day spent dealing with sniffling, sneezing, coughing, headaches, body aches, or joint aches? But living with a Spinal Cord Injury and having a cold just feels like a cruel joke from the universe. As if things aren’t challenging enough on a daily basis, having to deal with the added stress of even more physical obstacles is debilitating.

Before my accident, I almost didn’t know the meaning of getting sick. I might get a sniffle or two here and there but I can confidently say I pretty much never got sick. The last time I had the flu I was a 6th grader. Fevers were a long forgotten memory from childhood, when there was a bittersweet thrill in staying home from school, drinking endless glasses of orange juice and eating my mother’s home remedies of vegetable soup. Strep throat, mono, bronchitis, and anything that would have had me bedridden for more than a couple hours were completely foreign to me. To be honest, I was a bit unsympathetic towards people who were consistently missing large chunks of time from school or work due to minor sickness. Well, what a difference a traumatic accident makes…

Since I got out of the hospital, I’ve made a huge effort to be as healthy as I always was, if not more, so as to avoid getting sick and compounding my daily challenges with new ones. Thanks to those efforts I’ve been fortunate to avoid any illness despite the fact that I’m constantly working with different people who are around a lot of other sick people. The streak ended yesterday when I came home exhausted, achy and nursing a stubborn cough. Today was the first day of therapy in over eight months that I missed and it’s incredibly frustrating to think that even one day of rehab and exercise has to be compromised from my recovery due to something that’s out of my control. I take my rehab very seriously, and as anyone who knows me should recall, I don’t do anything that I care about half-assed.

So why is it especially challenging to deal with illness with a SCI? I’ll provide just a couple examples. My lung capacity is much less than it used to be before my accident. I remember one night in the hospital just days after my accident when I did not sleep the entire night because I had a tiny bit of phlegm in my chest but I was too weak to cough it up. I’ve gotten some of that lung capacity back but now I have a tiny scratch in my throat and I cough and cough and can’t clear it up. So I have to do the impossible, accept it and just deal with it. The other example is just how hard it is to do anything when my shoulders are achy and sore. I use my shoulders and arms for everything so even shifting positions in bed feels like a monumental task when my shoulders feel like heavy, painful clubs hanging off of my torso.

I realize that everyone gets sick and that my pseudo invincible previous self has to swallow his pride and accept that it’s ok to be under the weather a bit and that it’s temporary. But it doesn’t relieve my frustrations at having to deal with even more obstacles in an already challenging daily life.

Video Update – Parallel Bars Walking

Posted on March 5, 2013 by arashbayatmakou

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.

Spurts and plateaus or a slow and steady climb?

Posted on February 20, 2013 by arashbayatmakou

How do you measure progress? How do you know how much better something is than it was one day before? There are many things that can be measured and captured quantitatively but when it comes to matters of health or the body, how do you know if you improved more this month or two months ago?

I’m constantly being asked: ”How are you doing? You noticing any improvements? What’s new with the recovery Arash?” These reasonable and seemingly straightforward questions can be nearly impossible for me to answer. On a basic level, I would assume I’m doing better that day than the previous day, but on a deeper level it’s sometimes really difficult to understand if and how much I’m improving. This is one of the most frustrating elements of dealing with such a devastating injury that has damaged me in so many ways.

One of the earliest posts I wrote on this blog was about being on A Crowded Battlefield and how overwhelming it can feel to deal with so many parts of my body being damaged and the challenges of focusing on one thing and being presented with another challenge. In the same way, when I get asked those questions, I have to do a quick analysis of about 37 different body parts and functions and assess if and how much each of those has improved and if that’s more of an improvement than the last time I checked (probably just a few hours before).

In my head, it may go something like this: “How am I doing? Well, let’s start with the obvious: still can’t move my legs. My feet dangle as limp as they have since I began the hospital adventure seven months ago. I still can’t use a fork and knife because I don’t have enough strength in my core to sit up and use both of my hands freely. Speaking of hands, funny you should ask… yes I can type and hold a glass of water and push myself around in my wheelchair (have I mentioned how much I hate my wheelchair??!!) but I can barely squeeze the shampoo out of the bottle and forget about unscrewing an unopened jar or holding anything heavier than a book in my hand. Ahh but the toe, yes alas I can still wiggle my pinky toe. But wait wasn’t that a while ago that I started to wiggle my toe and thought that it was going to snowball into other major improvements, and oh yeah, that hasn’t happened quite yet…” It goes on and on but you get the picture.

All of this brings me back to my original motivation behind this post, how do I measure progress in this post-injury/still unfamiliar body of mine? Maybe the hardest question for me to answer is whether my recovery goes in spurts and plateaus or if it’s a painfully slow and incremental process. There are moments (like today and a majority of the last couple weeks) where I do feel like I’ve undoubtedly plateaued. Some of the exercises I did today don’t feel much stronger than they did last week, or even last month. My hands are so incredibly slow to improve and there’s little I can do to expedite their growth. Standing and walking on my own seem as far away as they ever have been.

But just when it seems like I’m unimaginably stuck on this plateau, I think about one thing: my body is constantly changing. Whether I feel stronger today than I did yesterday is hard to determine but I might feel ever so slightly different than I did previously. And maybe that’s the answer, maybe improvement isn’t always obvious or clear to me, but maybe I have to accept that change is the substitute for progress. After all, if my body was actually stuck and didn’t want to get any better, why would there be so many changes, so many tingles and burns and spasms and unfamiliar sensations and sore muscles? In that case, then maybe my recovery is more of an incremental climb, a barely upward sloped line glacially moving towards the top and signifying a very slow but consistent progressive process. I suppose I still can’t make up my mind on how to measure or explain my progress so just bear with me if I stumble or mumble a bit the next time you ask me how I’m doing.

My story on the Huffington Post

Posted on January 29, 2013 by arashbayatmakou

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.

Arash Recovery

My journey to get back on my feet

Category Archives: The challenges of SCI