Archive for the '1' Category

Stimulating spinal cord injury research in Dublin

I floated out of my mind for a flurry of seconds and then I was back in the lab, on a bench. Like so many of the new feelings I’ve felt this past year it is hard to describe. It was a bit like the floating I felt on morphine in intensive care. But that didn’t matter. What mattered was what the scientists were looking for on the computer screen. They were electrically stimulating a part of my brain so they could see whether there were intact descending nerves despite my damaged spinal cord. And what really matters is that we were performing these tests at all! That this research is happening here in Dublin.

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We’ve created a paralysis research program in Trinity College Dublin and we couldn’t have done it without the support that so many of you have given the Mark Pollock Trust. Thank you. 

The Trust now officially funds a full-time researcher, Neil Fleming, PhD who will run our collaboration with the American and Russian scientists.

If I take paralysis out of the analysis, this is an incredible milestone, the culmination of lots of hard work and effort. But I’m also frustrated. This past year, since the end of the UCLA trial and starting again here in Dublin has felt like we were standing still. Spinal cord injury research should be progressing faster and the trials should be bigger, more ambitious. Christopher Reeve used to urge the scientific world to work faster and harder and that call is still urgent.

Paralysis has to be part of the analysis of this announcement because paralysis is so devastating for every person living with a spinal cord injury. Every day I wake up I detach a bed bag and hand it to my carer, who helps me to get out of bed, wheels me into the shower. I get dressed sitting on my bed and then I roll to the lab, again only with the help of my carer. It is a paradoxical situation: I resent that I have to rely on my carers for everything, while being so grateful that they are there; I am lucky to have them at all. The creation of this trial is great, but I would trade it in an instant to be able to feel and control my body again. And this is what drives me to try to change the impact of paralysis on people and on those who love and support them. 

With Professors Reggie Edgerton of UCLA and Yury Gerasimenko of the Pavlov Institute, Neil and the team here in Trinity will study the paralysed body’s response to innovative electrical stimulation of the spinal cord combined with a drug to super-charge the nervous system while I walk thousands of steps in my robotic legs. 

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It’s also fitting that my university, Trinity and my colleagues, Dr Nick Mahony and Bernard Donne, who I’ve known since the good old days when I could both walk and see, have helped to make this happen. Nick and Bernard tested me in Trinity’s Human Performance Laboratory when I was trialling for the Irish lightweight rowing squads and again after I went blind and began taking on desert endurance races. And last month they were hunched over the computer alongside the American and Russian scientists looking to see what happened when I floated out of my body for that flurry of seconds. They created the space and gathered the expertise for us to do this trailblazing research and I can’t ever thank them enough.

Over the next twelve months I will spend most of each week in the lab, or walking while being electrically stimulated. That’s another feeling that’s hard to describe. The electrical stimulation on my back and the drug in my system when I’m walking in my robot make me aware of my legs beneath me and I can join in the walking enough to break a sweat. It doesn’t feel normal, like the way I used to feel my legs, but after five years of paralysis it is fantastic to feel and we know from the data that feeling is well worth pursuing.

This is the beginning of something. Something exciting, something that I hope will move us closer to the cure. So, it’s time for a small celebration, just so long as we keep our eye on the prize – to be able to take paralysis out of the analysis for everyone.

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I’ve Gone Part-Time Paleo!

There have been phases in my adult life when people squeeze my shoulder and say, “you must be training hard“. The problem is that it usually coincides with times when I have been doing little more than training myself to eat a mix of cheese and ham served up on various white flour products. Chunky? Yes. Fit? No.

 

When you are paralysed you are told to reduce your calorie intake to 1500 calories a day, which is really low. Really hard to maintain. And last year, during our 3-month research study in Los Angeles, I could have gone either of two ways. The omnipresence of pizzas, burgers and Mexican food was such that I feared the shoulder squeeze treatment at the end of the trip.

 

But we also had access to really healthy, tasty food where we were living. In Culver City I ate almost daily in Tender Greens where I had grilled tuna with a salad of Kale, parmesan, roasted garlic vinaigrette and garlic herb crostini.  When we weren’t there or at home, we ate across the road at LYFE Kitchen where every dish was less than 600 calories. My personal favorite was chicken, mushroom and spinach penne made with whole-grain pasta, green onions, lemon zest, parmesan and cashew cream sauce. This was only 570 calories and the portion size wasn’t really compromised due to the ingredient choices. Check out the cashew nut cream rather than dairy cream!

Tender Greens LA

And, when it was easy to get fast, healthy and tasty food, I chose it. By the end of the trip I had lost just over a stone in body weight (8 kgs).

 

But back in Ireland between May and December I went back to my old routine. Too many paninis and pizza. Too many bad choices and a worrying number of “you must be training hard” comments.

 

But on the 22nd of December, as our documentary film Unbreakable screened I got an email from James Statham. James runs a company called Paleo Meal Deliveries and he offered to work with me. His company delivers chef prepped meals to people each week. The microwavable meals are homemade, nutritionally dense and are low carb, gluten and dairy free. He offered to sponsor me, delivering a 3-day meal plan including breakfast, lunch and dinner each week to my door. In return he asked for nothing. After a month I have noticed that nobody has squeezed my shoulder and accused me of training. But they have commented that I’ve lost weight.

 

I think it is all down to access to good food. In the main I am eating well and the right amounts now that leaves me calorie room on a weekly basis to eat out the odd time or to have the odd treat. If I feel hungry in between, Simone has packed the freezer with LYFE Kitchen smoothie recipe bags that we can blend in our new Nutri-Bullet. It’s raw kale, fresh ginger, banana, cucumber, apple juice and lemon juice. So, we’ll see if my kale smoothies and 9 Paleo Meals out of 21 eating options will keep me motivated to make good choices for the rest of the month.

Lyfe Kitchen Smoothie

Something Comes From Something

MY FRIEND BARRY CORSCADEN is an enigma; relentlessly funny and deeply insightful. He says he’s going to write a book called “Something Comes from Something”. After some years, though, he has found that all he needs is the title. It says all he needs to say.

Last year many of the seemingly small ‘somethings’, that I and others around me created, aligned and became something bigger. So Barry has had many occasions this year to shout in triumph at me “you see, something comes from something!” So, I am going to try to draw the map of how we got here. How 2014 was the year that some of our projects began to crystalise.

Four and a half years ago a fall left me paralysed from the waist down. Stuck in hospital, physical pain and rehab for the first 18 months, with the benefit of hindsight now looks like the planning phase. I was figuring out if I would get out of the hospital bed and if I did what I would do with the rest of my life, Simone, my fiancée was researching who in the world was creating a cure for spinal cord injury and how we could join them. My family and friends were starting to think about how they could ensure I returned to an independent life. And because apparently ‘something comes from something’, all of this meant that we spent the following few years working hard on many small, disparate projects.

Mark, Stoke Mandeville Hospital 2010

Mark, Stoke Mandeville Hospital 2010

It was never clear if or when the ‘somethings’ on which we were working would pay off, or how exactly they were related to each other, but we pressed on. And then, 2014 began with a bang.

Science

In early February Trinity College Dublin, had an exhibition called Fail Better. It was a celebration of trying and not succeeding, leading to better tries, better results – and sometimes better failures. The Science Gallery asked me to exhibit and I set about convincing The Christopher and Dana Reeve Foundation that featuring Christopher Reeve’s power wheelchair, “Superman’s Wheelchair”, would be an important exhibit.

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“Fail Better” Exhibition, Science Gallery Dublin 2014

I was able to do this because I had come to know the Reeve staff and board over the past year through my and Simone’s roles as board members. We had been asked to join the board because when we were in Boston for a week in 2013 a friend had arranged for the Boston Globe to interview me about my small projects aiming for a paralysis cure, and when I met someone who knew someone in The Reeve Foundation she was able to send them that article which told my story – a story which they recognised. Lots of ‘somethings’ which meant they trusted us to fly Chris’s chair in from the Reeve Foundation offices in New Jersey to Dublin.

The impact of the exhibit was really interesting to us. Not only from the comments of the people who came to see it, but the fact that 10 years after Chris’s death, his drive and energy live on in such symbols as his chair. It also had a huge impact on me. I had to write the piece explaining the exhibit and, in the process of doing so, I had to tell myself my story. To remind myself why I was doing what I was doing and to take stock. I suggested that Christopher Reeve’s empty chair represents both the failure to cure paralysis and the compulsion to pursue progress. That I may no longer be the adventure athlete I was before I broke my back, but that I was now an explorer, inspired by the vision of another explorer – Christopher Reeve – travelling in his tracks.

Move to Los Angeles

And, then we packed up and moved ourselves to California for three months. The year before we had started to create our first major scientific collaboration with US-based scientists and technologists. My aim had evolved to be a catalyst for collaboration between the diverse siloes looking at a paralysis cure. So, Simone, my colleague Piers White from Mark Pollock Trust (www.markpollocktrust.org), my robotic exoskeleton and I took part in a study in UCLA. The scientists’ initial aim was to experiment with robotic walking while adding innovative transcutaneous electrical stimulation of the spinal cord and a drug to see what, if anything, might happen. And, surprise, surprise something came from this first something of its kind. Something really exciting.

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Los Angeles 2014

In short, when the scientists stimulated my damaged spinal cord at three sites simultaneously I was able to initiate and sustain oscillating step-like movements of my legs when they were placed in a gravity neutral position in slings off the end of a physiotherapist bench. Stimulation also significantly enhanced the level of assistance that my damaged body could generate while the exoskeleton was carrying me.

Fundraising

This year our Life Style Sports Run in the Dark events (www.runinthedark.org) gathered 16,000 people in 50 cities around the world. As I sat at the start line in Dublin I thought about the night of the first run in 2011. It was only 16 months after my fall and I was just out of hospital. It was wet, cold and desperately emotional as I sat in my new wheelchair with Simone at the side gates of Trinity College Dublin cheering on the 2,000 runners who were doing laps of my old university.

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Mark at the inaugural Run In The Dark Dublin, 2011

That night we met so many people, old and new friends, but meeting one man in particular stuck in my mind. I don’t know his name or where he is from but he stopped mid-lap to tell us that he was running because his daughter of only four years of age had just been fitted for her first wheelchair. He said that during a terrible time for him and his wife, they had been following my blog and that my being open about how I was suffering but looking for hope had “kept them going”.

I wish I could thank him in return. His words made us think we might be doing something right, motivated us to what has become a mission to find and connect people worldwide to fast track a cure for paralysis. That man’s something he gave us has been so fruitful. Since that night in 2011 over 30,000 people in total have been involved in Run in the Dark and the money they raised allowed us to spend those three months in Los Angeles, allowed those scientists to have a paralysed body and its robotic exoskeleton for three months. Time most test subjects simply cannot give on an ongoing basis. It will allow them to publish papers, raise more money and do further experiments all aiming at commercialising these interventions, these therapies and getting them onto shelves in doctor’s offices and into other people paralysed like me.

Awareness

As soon as we arrived and settled in Los Angeles we were off again. This time to Washington on foot of an anonymous invite to the White House for St. Patrick’s Day. When I got the email invitation to The White House I had to check it wasn’t spam. I didn’t believe it was real. But it was. I didn’t find out until late in the evening of March 17, 2014 how the invite came about. The something, it seemed, was a piece I had done for the American embassy a little while ago to celebrate John F Kennedy’s visit to Ireland. Someone remembered and when he heard I was in the US, asked that I be invited.

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Taoiseach Enda Kenny spoke of the Irish “… capacity to endure and to adapt, to survive and to thrive; to know fear, to know loss, and yet to conscript new generations to courage and vision …” then saying: “Mark Pollock, whom I see here in front of me, without sight, without the capability of walking, yet he has done extraordinary things in the sense of his vision and his courage of what we can do with our shared humanity.” All of this meant that after the speeches, Simone and I met President Barack Obama and first lady Michelle Obama, Vice President Joe Biden, the Taoiseach and Fionnuala Kenny, all of which meant we could put the topic of spinal cord injuries on this very global agenda.

And, another link in our US connections began About 18 months ago when Paddy Cosgrave gave me the opportunity to speak at Founders, part of the Web summit in Dublin. I invited the audience to come and see me walk in my robot in Trinity. One of those people was David Rowan the editor of Wired magazine in the UK. He asked me then to speak at Wired in London which I did and when we moved to LA he introduced me to the people who produce TEDxHollywood, all of these somethings meant that this year I was able to talk about the UCLA study in front of a truly global audience. (Watch Mark’s TEDx talk at https://www.youtube.com/watch?v=7rMYfiRNT7g ).

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TEDx was in late June and my talk was titled “Expecting Problems As We Explore Possibilities”. It was an incredible opportunity to speak on this platform and the conversations that followed fed into our other major project that we brought to fruition in 2014 – our documentary film “Unbreakable – The Mark Pollock Story”.

Back in 2010, two months after my fall, RTE screened a documentary about my adventure race to The South Pole. Ironically the director and my friend, Ross Whitaker and I had called it: “Blind Man Walking” and the night it aired in Ireland I was decidedly not walking. I was in the acute ward of Stoke Mandeville Hospital in England navigating the shock of paralysis and multiple debilitating infections. My family and friends and I were all in shock and I suppose initially I thought I was going to make some measure of recovery. So, when Ross came to visit we agreed he would bring his camera and keep on filming with the proviso that if we ever got to the point that we didn’t want to finish the documentary, if I didn’t recover, then we would scrap the footage.

And I didn’t recover, but that no longer seemed to be the point. The point is that we are heading in that direction and having some footage of the early very painful days in hospital as well as of the work we did in Los Angeles this year all became a big something – our film. Our documentary opened at the Light House Cinema in Dublin in October 2014 for an extended run, followed by an at times sell-out national tour. Award-winning director, Ross Whitaker and the team created a powerful film that has enabled us to meet and talk with people all around Ireland.

Unbreakable audience standing ovation

The Future

So I wonder now, what all these somethings, facilitated by so many fantastic people, will turn into next year. We are working on the international release of Unbreakable for 2015 which is exciting as a project but we hope useful too as we try to get paralysis onto the global agenda. We are also in the process of extending our Los Angeles study to explore what effect long term use of stimulation, robotics and pharmacology will have. So, I hope to be back walking in my Ekso Bionics robot while stimulated so we can learn more about whether this can be a viable therapy for other paralysed people.

The injuries that I suffered in 2010 have left me paralysed. But after navigating a path through intensive care and the devastating shock of paralysis, I and a growing we, started by doing something. That something has gathered pace and last year felt like we reached the end of the start up phase. It feels like we’re getting ready for making a bigger impact. Now, we are focused on extending this groundbreaking research and helping translate that research into real therapies in the community as soon as possible. So, as we reflect on last year and plan for 2015, I want to thank all the people who have supported me to try somethings that I hope will make a significant impact on the global problem of paralysis. There is much more to do but we are making progress – thank you.

“Unbreakable” documentary film Irish tour coming to an end

The Unbreakable film Irish tour is coming to an end and it has been incredible to get the chance to discuss our story at the post-screening Q&A’s with so many people around the country. We have learnt a lot and it means a great deal to Simone and I to know that we have your support behind us as we push forward in our aim to find a cure for paralysis. Alan Bathe of Roslyn Park College (pictured with me below) wrote this poem and he read it at one of our Dublin screenings – it is just one example of the amazing and thought provoking responses we have received from audience members around Ireland.

Mark and Alan Bathe from Roslyn Park College after an Unbreakable screening

Will You Walk Again?

by Alan Bathe, Roslyn Park College

– Inspired by Mark Pollock’s Unbreakable film

Only happiness on your face,

While at a steady pace,

You draw your audience into your story,

Emotional, riveting, no fury,

As peaceful as a hummingbird,

Tackling things which are undesirable and immense,

Your token is your word,

Makes your sweat rinse

Oh! Mighty Man, Are you a wrestler?

Or a warrior? Not a meddler!

Saint? Angel? Maybe the both,

Ah sure you know you have an angel looking after you,

I wish the same on my boat,

At sea as I enjoy the elegance, as you do,

We enjoy journeys, different ones,

With every breath in our lungs!

“Will you walk again?” asked by us,

Angels do inspire us.



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