EMERYVILLE, California (Reuters) - I dream of walking every other night. The dreams aren’t bitter. They’re charged with hope. It was this hope that led me to California to take part in clinical trials for a powered exoskeleton that is designed to help paralyzed people like me walk again.
I’ve been using a wheelchair for the past 21 years after one day in May 1996 during what was supposed to be an idyllic vacation on the Greek island of Poros.
One moment I was on a cliff cranking up a rented scooter, still shaking the salty Aegean water off my hair after a swim. The next moment I was on the rocky beach five meters below, on my back. I realized I couldn’t move my legs.
As much as I loathe that day, I know that I was lucky. That goofy plunge I took with the badly parked scooter could have killed me or left me completely paralyzed.
Instead, I fractured the 12th dorsal vertebra, right where the rib cage ends. That cost me the movement and feeling in my legs, except for some weak movement and dulled sensation in the upper thigh area.
My chances of recovery were little to none after the long hours my spinal cord remained compressed while I was taken by helicopter to Athens and moved between hospitals.
At 25, it sounded like a death sentence. Then I realized it was more of a life sentence – to lead a different life.
Now here I was in California’s Silicon Valley, thousands of miles from my home in Lisbon, wearing a walking, talking robotic suit called Phoenix, all titanium rods, aluminum-cased motors, wires, straps and protective padding.
When I took my first step, my wife, Liete, gave me a teary-eyed hug. I was too busy keeping my balance to celebrate. It took many more steps and several strenuous sessions before I started to enjoy seeing my wheelchair parked on the other side of the room as I trudged on – first in parallel bars, then with a walker and finally with crutches.
Relatives and friends have bombarded me for years with internet and social media links to the latest research into spinal injury.
It’s a mixed blessing because the research offers hope and yet at the same time shows how little progress there has been in practical terms, at least towards finding a cure.
Stem cell research to treat spinal cord injuries was the big topic 20 years ago. It still offers hope, but scientists say the effectiveness of the treatment is yet to be proven, and there are ethical and health concerns as well.
Experiments with implanted computer chips, sensors and electrodes that send signals from the brain to the muscles, bypassing the injured part of the spinal cord, have enabled some patients to regain some movement in their arms. But I don’t want electrodes in my brain.
Non-invasive systems like electrode caps that pick up brain waves and transform them into tiny electric shocks that make the muscles contract have so far proven too cumbersome.
Which brings me to exoskeletons. They do not claim to be the cure, but they can be a practical aid to making disabled people more mobile.
The original meaning of the word is a protective or supportive shell, like that of a shrimp. More recently it has come to mean an outer frame that not only supports, but also robotically simulates or enhances body movement. That makes paralyzed people the perfect target group.
The fact is, we need to be in an upright position regularly or we develop blood circulation and digestive tract problems. We start losing bone mass, which makes leg bones brittle. Our bodies become more susceptible to infections.
A standing frame, where padded straps for the knee, waist and sometimes upper body keep you upright, is usually the solution at home. My frame allows a bit of leg movement, but it is still a mostly static, bulky contraption, which makes standing a rather tedious chore that I tend to skip too often. I am 46 now and the older I get, the less I can afford to skip it for my health.
If I could walk about the house instead, fetch a book or get a breath of air on the patio, that would be a life changer, not to mention the possibility of doing the same in the office or on the street.
With time, and a lot of support from my family, friends and Reuters colleagues, I discovered you can get back in the saddle and regain independence.
Returning to work, first to a desk job in my native Moscow and then to reporting assignments in Latin America, was the most important step in that direction. At one point, I took the “back in the saddle” part so literally, I bought a thundering motorized tricycle which I rode with a bunch of Brazilian bikers.
I reported from slum riots and carnival parades in Rio and from tumultuous election rallies in Venezuela. I learned that even in the most chaotic situations, crowds tend to open a path for a wheelchair and strangers offer to help. I often ended up with a better vantage point than my colleagues.
Slowly, my body adapted. After battling bouts of depression, bladder infections and weight gain, I’ve taken up regular exercise in recent years and am now much fitter, generally in good health and have a moderately optimistic view of the future.
But walking remained off-limits. My leg muscles have largely atrophied, making my calves no thicker than my arms.
Not that I haven’t tried walking. Like many in my situation, I scoffed at the label “confined to a wheelchair,” seeking to prove to myself and others that it doesn’t apply to me. Just like “paralyzed from the waist down,” the expression is often technically wrong. To us, every millimeter of working muscle counts.
A couple of months after my injury I was already learning how to walk in a spinal injury rehab center in Aylesbury, England – on crutches and calipers or full-leg braces that prevent the knee from bending and stabilize the foot.
It was very hard work, especially on my arms and hands, and ultimately proved to be too much. I endured a couple of falls. Calipers just didn’t give me enough confidence to get up on my own or walk more than a few meters away from the exercise rails. The last time I used leg braces, along with a tailcoat and top hat, was on my wedding day in Brazil in 2002.
Over the years I’ve tried other walking aids. All required the assistance of a person called a “spotter” to help me stand. They gave me a very limited range and the speed of a tortoise.
All things considered, life was just easier and I was more independent in a wheelchair.
My home is easily accessible by wheelchair. I can fold it, put it in the car and drive wherever I like. Or I can just roll out onto the street for some air or a drink in a corner bar. Lisbon is not the most wheelchair-friendly place, but more and more buildings have ramps, lifts and adapted toilets.
As I prepared for my journey to California in August, I tried to keep my hopes in check. I’d seen videos of paraplegics wearing robotic suits. They were all rather slow and in most cases required crutches for support. They were also generally prohibitively expensive.
If I could put this suit on unaided while in a wheelchair, stand up using crutches and walk around for an hour, that would be good enough for me, I told myself.
I was going to test an exoskeleton called Phoenix, which draws on technology developed at the University of California, Berkeley. The testing I signed up for is needed to win U.S. Food and Drug Administration approval. SuitX, the company developing the Phoenix, says it will be the lightest and most affordable version on the market.
SuitX’s CEO, Homayoon Kazerooni, is a professor and director of the Robotics and Human Engineering Laboratory at the university. SuitX already makes industrial exoskeletons used, for instance, by airport baggage handlers.
Most exoskeletons have motors or hydraulics powering the hip and knee joints, but the Phoenix has only two motors at the hips, powered by a battery in a small backpack. Hinges keep your knees straight when your weight is on them and allow your lower leg to swing when you take a step.
Phoenix and I did not hit it off right away. In fact, had it just been a test drive and not the intensive two-week program I had signed up for, I probably would have decided that it was not for me.
As much as I had told myself not to expect miracles, I was all psyched up for one. I even came to California wearing a pair of old boots from the time when I could walk. “These boots are made for walking and that’s just what they’ll do,” I hummed the old Nancy Sinatra hit as I laced them up. For more good luck, my wife and I picked a local cafe called “Can’t Fail” to start the first day of tests with a hearty breakfast.
The first disappointment came during the fitting session, when my boots were discarded. I had to wear special shoes to fit the metal soles of the exoskeleton, as well as tight ankle braces to stabilize my debilitated joints.
Standing up was tumultuous, with the physiotherapist and two other employees helping me through the process, which still required a good push off the bars.
Then came my first step. I had been ready to repeat Neil Armstrong’s “one small step” phrase, half in jest, but it got stuck in my throat. I was gripped by a fear of falling. The device felt more wobbly than I imagined. The time it took to regain my balance and shift my weight forward for my next step seemed like an eternity. My knees were half-bent because my hamstrings had contracted so much from sitting for so many years. My hands hurt from nervously gripping the parallel bars.
I was unimpressed, demoralized even, so Liete took me for a scenic drive in the hills near Berkeley, and later we indulged in comfort shopping and some Napa Valley wines. It helped. I slept well and woke up rested and looking forward to getting inside the exo-suit again.
Then I met Steve Sanchez, who has been SuitX’s “chief pilot” for the past five years and uses the device regularly. The ease with which he stood up from his wheelchair and walked about revived my spirits.
It took me several more days to overcome my panic and feel more or less comfortable on my feet. I could stand up, walk and sit down with a spotter. A female voice from a speaker in the suit’s frame encouraged me to keep moving. “Left, right, left,” it said in time with my steps.
My hands no longer hurt as much. At night when I couldn’t sleep I would go over my moves - where I’d failed, what I’d done right - so my walking would be slightly better the next day. In our downtime, we visited San Francisco’s museums and galleries and met friends. Recounting my experience to them helped me figure out that I was actually enjoying the testing more than I thought.
My rookie mistake, I realized, was not trusting the machine and trying to compensate for what I thought were its shortcomings with my own bumbling efforts to support myself and move my legs. After almost two weeks of training, walking was still a lot of hard work, but I was getting faster and gaining endurance.
My health was better, too. A long-time sciatic pain was gone. I even managed to shake off a bad cold, which would normally have landed me in bed. To me, the improvements were tangible.
At the end of the program, the distance I covered during a set time interval had doubled since the mid-term test. I performed the theme from the classic movie about two Olympic runners, “Chariots of Fire,” as I approached the finishing line.
I’m starting to put aside money for a Phoenix because walking is a practical goal, not just a dream anymore.
(For a graphic on 'Phoenix rising' click tmsnrt.rs/2y2FtVA)
Reporting by Andrei Khalip; editing by Janet McBride and Richard Woods