Collaborating in Los Angeles

I have been in Los Angeles for the past two months. I’m part of a team that includes a Russian, an American or two, the Irish and British, several Indians, a Finn, of course all of you that got me here and a Robot. We all bring something different, but we are all working towards the same thing: understanding more about human movement. Even the Robot. This is the short-term goal but my aim remains – to help to fast-track a cure for paralysis.

 

I am approaching this the way I approach athletic pursuits. So, I’ve been breaking my personal bests in my Ekso Bionics robotic legs adding over 10,000 steps a week. Piers White, head of The Mark Pollock Trust (www.markpollocktrust.org) is moonlighting as my trainer and Simone George, my fiancée, provided our intellectual integration into this world of active scientific advocacy.

 

Mark,Piers, Yury and Parag UCLA 17 April 2014

Mark,Piers, Yury and Parag UCLA 17 April 2014

The titans with whom we are privileged to collaborate at UCLA are led by V. Reggie Edgerton, distinguished professor of integrative biology, physiology and neurobiology, Yury Gerasimenko, Ph.D., St. Petersburg’s Pavlov Institute’s professor and director of the laboratory of movement physiology and Dr. Dan Lu, MD,Ph.D. As I train in my robotic exoskeleton their team of scientists are tracking what is going on, if anything, in my paralyzed legs. Our primary objective is to determine whether we can improve posture and stepping using two novel ways to neuromodulate (excite and affect) the spinal cord.

 

Reggie and Yury are long time collaborators with Susan Harkema. Together they have had what I believe is the most exciting breakthrough in spinal cord injury therapy since the 1940′s when Professor Guttman figured out how to keep people with spinal cord injuries alive. Susan Harkema Ph.D. is the rehabilitation research director at the Frazier Rehab Institute in the University of Louisville and director of the Reeve Foundation’s NeuroRecovery Network. Simone wrote about us meeting her in my previous blog. They just published their research showing significant victories over paralysis. Published in the medical journal, Brain, they describe what they witnessed after implanting electrical stimulators into the damaged spines of four paralysed men.(See more here)

 

All four men were as completely paralysed as I am; two of the four had some sensation below their injury. They can all now voluntarily move their hips, ankles and toes and have displayed improvements in their overall health, including an increase of muscle mass and the regulation of their blood pressure. All four men are also able to bear weight independently.

 

Reggie Edgerton, who has been conducting fundamental research in this area for 38 years, says: “This is a wake-up call for how we see motor complete spinal cord injury. We don’t have to necessarily rely on regrowth of nerves in order to regain function. The fact that we’ve observed this in four out of four people suggests that this is actually a common phenomenon in those diagnosed with complete paralysis.” And Susan Harkema says: “We have uncovered a… new intervention strategy that can dramatically affect recovery of voluntary movement … even years after injury”. When she joined us at The Science Gallery’s Fail Better exhibition she described her initial reaction to her patient moving his toe as simply: “Holy s***!” After all the purpose of the study was to learn more about nerve pathways, not to make patients move.

 

So, they now know what I have suspected to be true. I plan to support the next phase of the epidural implant research in every way I can; this is something Simone and I have been doing for the past year in our roles as directors of the Reeve Foundation. While I will not personally benefit from the epidural implant just yet – the subjects for the next phase of this human trial will have broken their backs higher up than I broke mine – this is for good reason. They want to repeat what they have learned in the first four subjects, including better understanding improvements in blood pressure and the cardiovascular effects of paralysis, some of the things from which my lower injury spared me.

 

I also plan to continue to explore ways that this electrical stimulation technology might, with other interventions, produce wins for people with all types of spinal cord injury. That is why the Trust has moved us here to LA right now, and why I am walking on and on and on, one step at a time. We continue to balance acceptance and hope: to be excited enough by the possibilities this collaboration presents to have made it happen, all the while accepting that I will roll home in my wheelchair in a few weeks content that the scientists have useful data with which to progress this work on behalf of all those living with paralysis.

 

Meeting Scientist Dr. Susan Harkema, Ph.D.

For the first time ever I’ve got a guest blog and it is from my fiancée, Simone George. She has been with me in good times and in bad. And, she is alongside me on our quest to find a cure for paralysis. Over to you Simone…

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“This photo was taken when Mark, Mark’s trainer and friend, South Pole Simon O’Donnell and I travelled to the US to meet a number of scientists who are looking at spinal cord injury recovery. I can’t quite remember now why we are laughing. Dr. Susan Harkema, Ph.D. is incredibly accomplished, bright and focused on her work. I have been reading journal articles about her since Mark broke his back. Then I met her and she is also warm, funny, kind and so, so passionate about giving people like Mark some victories over paralysis.

The machine Mark is sitting in measures the torque muscles create. So, if you or I were in the position shown in the first photo we would be asked to kick out our leg and the machine would measure the power in the right quadriceps muscle. Mark cannot kick out, so the pads stuck to Mark’s thigh allow the therapist to electrically stimulate the nerves that make the quadriceps contract, the quad should contract and create some torque and a kick – POW!

But functional electrical stimulation has never worked particularly well for Mark. This is probably because of the damage to his spinal cord at L1. Specifically his right quadriceps would never contract. This photo was taken just after Susie’s expertise in action meant that Mark’s right quad finally fired and did so with some gusto. She also got such a good contraction out of his right calf muscle that his right abdominal muscles contracted in involuntary aggressive stomach crunches. This sort of nerve signal confusion is not uncommon and scientists believe it is because the damaged spinal cord reorganizes. Maybe that is why we were laughing in the photo…

Christopher Reeve and the doctors and scientists working with him wrote about improvements in his paralysed body as a result of stimulating his muscles to contract. These were the articles that I read over and over when Mark was in hospital in 2010. I also read many of Dr. Harkema’s articles and was able to tell her that for some reason her name had led me to picture her as an Asian gentleman. To be able to work with her now, to even meet her has been a privilege. Dr. Harkema’s Ph.D is in physiology and working through a collaborative partnership in Louisville she is also the National Director of the Reeve Foundation’s NRN, a cooperative network of cutting-edge rehabilitation centers designed to provide therapies by translating scientific advances into activity-based rehabilitation treatments.

The Mark Pollock Trust allows Mark to collaborate with scientists like Susie and for us, as people living with the effects of a spinal cord injury, to advocate for their work. In this case Mark also lent his injury to her laboratory to look at and left Louisville with a novel stimulation program that Mark and Simon have put into action in the gym ever since. The Trust’s ultimate aim is for the best of these therapies to be available for the entire spinal cord injured community.”

-Simone-

Superman’s Legacy Lives On At FAIL BETTER

Late last year I was invited to contribute to an exhibition called FAIL BETTER at The Science Gallery in Trinity College Dublin. That exhibition is on for the next 3 months and has been billed as a perspective-shifting exploration of epic and inspirational failures. It features contributions from all walks of life, including famous explorers, inventors, scientists, and athletes.

Our contribution was to bring Christopher Reeve’s wheelchair to Ireland to highlight the failed notion of rehabilitation; that the wheelchair compensates for our inability to walk.

The text below is what accompanies his wheelchair along with my video http://www.markpollocktrust.org/video at the exhibition:

Mark with Christopher Reeve's chair at FAIL BETTER exhibition

In preparation for the South Pole Race, I learnt a lot about Shackleton, Scott and Amundsen, the polar explorers who carved those first trails into the Antarctic ice. They were the pioneers – that was their privilege, their courage, their risk. They charted the unknown world showing the way for the rest of us. 100 years on I followed in their tracks as I became the first blind person to race to the South Pole.

18 months after the race a fall from a second story window nearly killed me. I broke my back and the damage to my spinal cord left me paralysed. Now I am inspired by the vision of another explorer – Christopher Reeve. I am travelling in his tracks.

He dreamed of empty wheelchairs. He and his wife Dana were the hub around which new global collaborations formed with the aim of curing paralysis and they forged ahead with intelligence and ambition. Sadly Christopher died in 2004 from complications related to his paralysis before their ambition was realised; Dana died almost two years later from cancer.

But the legacy they left us is strong. In a world that has failed to discover the cure for spinal cord injury Christopher has shown me the way. He explored his own body, exercising his atrophied muscles with functional electrical stimulation, doing what he could to weight bear, to stand and to walk his paralysed limbs.

So now I roll to the gym every day in my wheelchair to explore the possibility of spinal cord injury recovery using aggressive physical therapy and high-dose electrical stimulation. I strap my paralysed limbs into my Ekso Bionics robotic legs and I walk. I walk miles and miles of uncharted steps towards the frontier of recovery.

I believe a cure for spinal cord injury is possible. Success is our objective. And we know that in our pursuit of a wildly ambitious goal, the potential for failure travels with us. If there is no risk of failure, it’s probably not worth pursuing.

More of an explorer than ever before

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In preparation for the South Pole Race I learnt a lot about Shackleton, Scott and Amundsen, the polar explorers who carved those first trails into the ice in Antarctica. Their stories inspired and excited me, but I never felt like an explorer during the race. They were the first, the pioneers – that was their privilege, their courage, their sacrifice. They dared to chart the unknown world for the rest of us to follow in their tracks. I, and everyone who came after them, have simply been adventurers on a different type of quest.

Over the last few months I have begun to make sense of the irony of where I find myself now.  The moment I fell and was left paralysed everything changed. No matter how much I fight against it, it has. Forever. When I raced to the South Pole I was an adventurer, now I am not. My ability to compete on merit in adventure races is gone. Being blind and paralysed, I can’t pull my weight on the team anymore. If I dwell upon what I have lost too much, it could break me. Instead I see the irony of my new blind and paralysed self. My identity as an adventurer is gone, yet I closer to the polar explorers than I ever was while skiing to the South Pole.

I roll to Trinity every day in my wheelchair and strap my paralysed legs into my robotic legs and I walk. I walk miles and miles of uncharted steps. Success is uncertain, maybe even unlikely. I walk miles and miles with Simon, my South Pole Race teammate, at my shoulder, taking time from his work and his family to accompany me, step after step after step, along the frontier of recovery. Behind us is a diagnosis of paralysis, ASIA A complete meaning – further recovery so unlikely that conventional wisdom suggests that it is not worth trying. In front of us though is that vast, uncharted world.

Of all the things I have ever done this has the greatest chance of failure over success. There is so much at stake – the rest of my life, my relationships, my emotional and psychological wellbeing. We don’t know where the cure is. Out there, somewhere, like the South Pole, I am making the most educated guess available in this world at this time and I am pointing myself in what we hope is the right direction. I say we, because this exploration requires and is taking global collaboration – those supporting me financially through runinthedark.org, the spinal cord injury organisations I work with, the scientists, doctors, the paralysed.

So, I am embracing that irony and this new identity – former South Pole adventurer, now paralysed explorer on a mission to find and connect people on the frontier of spinal injury recovery. I am exploring the effects of aggressive physical therapy and walking my injured body and using the great support I have to try to connect those working in science and medicine around the world. If not for me, for the millions of people like me around the world, trying to live in the spirit of those early explorers and believing that just because it hasn’t been found doesn’t mean that it won’t be.

Get down on your knees and pray for Shackleton

For scientific discovery give me Scott; for speed and efficiency of travel give me Amundsen; but when disaster strikes and all hope is gone, get down on your knees and pray for Shackleton.” Sir Raymond Priestly, Antarctic Explorer and Geologist.

For the first two weeks in April, I sat in a classroom in the Harvard Kennedy School of Government. I was part of a group of 65 Young Global Leaders from around the world. The 10 days were a mind-blowing experience, with the pinnacle for me being Dutch Leonard’s classes on “Leading Through Crisis”. For an entire afternoon, we discussed leadership failures and successes against a backdrop of extremes. We started with the 1996 Mount Everest disaster, through the 2010 Chilean mining rescue, the BP oil spill in The Gulf of Mexico and we spent an entire morning on the Shackleton expedition of 1914 – 1916.

Check out an article about Mark during his Harvard stay in the Boston Globe.

First, I had an overwhelming desire to cheer out loud when I read Sir Raymond Priestly’s quote. Then I realised for the first time that my specialist subject is actually a formal academic area of study. What I have experienced in the aftermath of blindness and paralysis and by racing in the world’s most extreme environments, was what Dutch Leonard was teaching us about.

Mark Pollock & Dutch Leonard

For me, the most interesting strand of our discussions was a debate about the effectiveness of hierarchical command structures compared with flatter collaborative approaches. Dutch’s conclusion is that in most situations, with predictable problems, a hierarchical command structure is very, very effective. But, in unpredictable circumstances, this kind of structure can be inadequate. It often fails. Leading through a crisis, any crisis – man-made or natural disaster, requires decisions to be made in a world of imperfect knowledge and uncertain results. It requires the strengths we saw in Shackleton’s crew – the ability to try something, fail and immediately try something else.

Since I got back from Harvard, I’ve been considering how this applies to spinal cord injuries. It seems to me that the formal medical structure is the best at keeping people who break their necks or their backs alive, for stabilising the bones in their backs, for teaching those people how to inhabit the world again. They can predict with amazing accuracy the physical and mental progression of a young man or woman suddenly paralysed and needing to get out of bed, into a wheelchair and back to living life. They are also good at helping people who aren’t completely paralysed to make the most of the function they have left.

The formal medical structure is vital. Without it I would be dead. Without it I wouldn’t be back at work, back living a life. Without my wheelchair, I couldn’t get around. This work is nothing short of a miracle. The formal medical structure has made standard, that miracle of surviving spinal cord injury and re-integrating into society.

But the amazing success of the formal medical structure is also its failing. Its success with the now predictable problem of keeping people alive, getting them into their wheelchairs and back to living is also its greatest failing, when it comes to solving the un-predictable problem of a cure for the paralysed. The structure itself constrains intellectual collaboration and translation of breakthrough science into clinical studies and then into actual therapies.

I finally found the words in Harvard to explain what I was seeing in my research and my life. We need hierarchy and structure for life’s predictable problems. But we need the glorious chaos of global collaborations and a fanatical, fantastical desire to solve the things the human brain can’t yet comprehend. In my case, it is the regeneration or rehabilitation of the damaged spinal cord. Finding a cure for spinal cord injury is not a predictable problem. It is a human crisis and it requires collaboration across geographical, organisational and intellectual boundaries.

Mark Pollock & his Harvard Diploma

It was a privilege to learn what I learnt at Harvard. I now need to take it and do something with it. We are in the midst of a crisis and in the spirit of Shackleton, we must find a way to move forward, despite the excruciatingly slow progress and seemingly unbeatable odds. It is time for collaboration to sprout out of and around the formal medical hierarchies. We’re on a mission now.

Exploring the frontiers of recovery from Spinal Cord Injury

In 2010 a fall from a second story window nearly killed me. I broke my back and the damage to my spinal cord left me paralysed from the waist down. From the moment I hit the ground, I joined a global community of people that according to the experts, have no hope of recovery from complete spinal cord injury. But what if the experts are wrong?

Only 60 years ago, patients with a spinal cord injury had an 80% chance of being dead within a year. The 20% who survived were likely to be institutionalised. But in 1940s in England, Doctor Guttman wasn’t prepared to accept the status quo, and he founded the first spinal unit in the world at Stoke Mandeville Hospital. His work transformed spinal cord injury from a death sentence to a manageable injury with near normal life expectancy.

So why not a dramatic change in prognosis now from ‘no chance of further recovery’ to ‘some functional recovery’ in the next 60 years? The answer I suspect lies somewhere in the misplaced fear of offering false hope.

As I lay in the spinal unit that Guttman created navigating the psychological chasm between acceptance and hope, I was presented with an expert view from one of the senior medical team that hoping for recovery was proven to be psycologically damaging.

I simply don’t agree with that analysis. I understand that hoping for a cure without first facing up to the reality of paralysis might lead to an avoidance of learning the physical and psychological skills to live life as a wheelchair user. I have accepted the wheelchair. It is almost impossible not to.

Yet acceptance without hope runs contarary to my experience of dealing with blindness 12 years earlier, and subsequently racing to the South Pole. And I believe it stifles our ambition to progress. So, I also hope for another life. A life where there is a cure for spinal cord injuries. And in the spirit of Guttman, I am challenging today’s conventional wisdom in an effort to turn that hope into a reality for me, the global community of spinal cord injured people with no hope, and the ones who will join us in the future.

To this end, I am exploring the possibilities of recovery using my own body as a research subject, as I train for 2 to 3 hours daily. There are a growing number of therapies, technologies and products that sit outside the traditional acute and rehabilitation system and I am using many of them to test their effects. I am following an aggressive physical therapy programme, cycling on a functional stimulation bike and walking in an Ekso Bionics robotic suit.

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Also, with the help of many thousands of supporters, I have been in a position to fly to different countries to test some of what is available around the world. But others are not in a position to do so and almost none of the advanced therapies and technologies that I use daily are available in mainstream medical facilities. So, I am making my body available for research and capturing the data with the aim of mainstreaming what is currently on the fringes.

The cure for spinal cord injury simply requires enough of the right people having the will to make it happen. Even if I do not walk again I believe others will, if enough of us explore the gap between reality and fantasy in pursuit of a cure. It is time to disregard the impossible. If not us, who? If not now, when?

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This blog also appears in the US based Huffington Post:

http://www.huffingtonpost.com/mark-pollock/spinal-cord-injury-recovery_b_2875485.html

A year in robotic legs – starting the analysis

This time last year I took my first few faltering steps in a revolutionary new set of robotic legs from ekso bionics.

I wrote a blog the day after that first experience and said: “I was scared. Not of the walking or chances of falling. Rather I was scared that my blindness would stop me from being part of something that I believe is one of my best chances of walking again.”

Twleve months on, the blindness and paralysis remain but the fear has gone. Today, I completed 2196 steps in 60 minutes. And the encouraging thing is that I’m disappointed that I didn’t make it to 2,200 steps. I’m not scared anymore, just keen to continue exploring the boundaries of what is possible.

My South Pole team-mate, Simon, is now my lead trainer and we are setting and beating our goals. I’m walking faster and further in less and less time. It feels easier and I hope it looks more like normal walking.

You be the judge – here’s the most recent video of me walking.

We’re making progress and as part of my training we’re recording everything that I do during each session. The machine captures data – the number of steps, walk time, stand time, the temperature of motors at my hips and knees – which is transfered back to the factory in San Francisco in real time via a wireless connection. The physio from ekso bionics europe travels to visit us to carry out a series of standard tests each month.

All of this is designed to improve the system and understand the impact that walking has on the body and mind of a paralysed person. From a personal perspective I’ve noticed two big positives with ekso. I just feel better every time i walk and that psychological lift is positive in itself. Physically there is a clear impact. After each session the small spasms that I get in my legs disappear and the dull pain in my back lifts.

In short, I feel both mentally and physically better after walking every time. I now need a few scientists to tell me what is happening inside my body. Anyone interested?!



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