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.

My Insurance Claim after Paralysis

Last week I was in court in the UK about the fall that left me paralysed in 2010.

For legal reasons I could not talk about the case and in that vacuum there have been unbalanced accounts of the court proceedings in the media.

Whatever the court’s judgment I wanted to explain to you why I took this case. To talk as directly as possible with all of you who’ve supported me to build a life after paralysis; those who contribute to the Mark Pollock Trust and who are involved in Run in the Dark.

Public Liability Insurance Policy

The headlines that said that I was suing my friends were misleading and provocative. My claim was made where there was a public liability insurance policy in place to meet the cost of accidents like mine. Most house insurance policies contain such cover for this exact purpose. Therefore the insurance company’s solicitors defended the case. My friends did not have to hire their own solicitors. They did not have any legal costs. They were never at risk of having to compensate me from their own pockets for the costs I bear as a result of my injury.

Limiting the Claim

It is important to me that you know that I expressly limited my claim for damages to the cap on my friends’ insurance policy. This is a fraction of the financial cost I bear as a result of the fall. But I did not think it fair that my friends would have even one moment of worry that they would have to personally pay me a penny.

Why I Took this Case

This was the culmination of a process that took almost 5 years. During my initial 7 month stay in the National Spinal Injuries Centre in the UK the other paralysed patients and I were advised by healthcare professionals, social workers and legal experts. They told me that life after spinal cord injury is incredibly tough and in their experience it is especially so for those who do not receive a payment of damages for their injury.

Spinal cord injury is described as a ‘catastrophic injury’ because not only is it horrific for its physical and life-altering aspects, it is also prohibitively expensive. As the press reported, the costs when anyone is paralysed run to the millions.

I was told to check all possible sources of insurance and home insurance policies. So, as part of the process, I established that my friends had home insurance to meet my claim.

The Mark Pollock Trust

While I was still in hospital some friends at home set up the Mark Pollock Trust and its independent board of Trustees. Supporters began donating, volunteering their time and expertise and, eventually, taking part in Run in the Dark. The Mark Pollock Trust’s mission soon became to find and connect people worldwide to fast track a cure for paralysis. Most recently we employed a research scientist to help build a spinal cord injury research program in Dublin.

Those involved with the Trust also felt it was not right to ask individuals for financial support if I did not pursue this insurance policy in place for the very purpose of covering some of the costs associated with my injury. The only reason not to continue with the case was that it would be tough on everyone concerned. Of course, no one wants to have to involve their friends, or family for that matter, in litigation.

But the insurer would not discuss settlement of my claim and it became clear they would only pay if a judge sitting in court after a full hearing established legal liability. My solicitor issued proceedings and I instructed him to write to the insurance company’s solicitors to tell them that I was limiting my claim to the value of the policy and that they must tell my friends this, which they did.

Legal Costs

To be absolutely clear I confirm that no money at all from either the Mark Pollock Trust, Run in the Dark or any other fundraising done in my name has been used to finance this case in any way, ever.

And finally…

I hope you understand that I took this case because it was not right to carry out public fundraising without also making a claim on a public liability policy in place for the purpose of covering some of my care and rehabilitation costs. I took both expert advice and advice from my friends and many of you who have supported me through some really tough decisions, but ultimately I took this case because I believed that it was the right thing to do in the circumstances.

Thank you for taking the time to read this.

Regards,

Mark

Polar Titans & Our Own Intrinsic Motivation

Last Sunday I dropped into The South Pole Inn in Annascaul, Co. Kerry to honour Tom Crean. He was a titan of the heroic age of polar exploration. He was born in Annascaul and the pub he ran after his polar exploration ended in 1916 still serves beer and is a memorial to his incredible life.

Mark with Eileen Percival who runs The South Pole Inn

Mark with Eileen Percival who runs The South Pole Inn

Simone, my fiancée, and I toasted him with a beer named after him and Simone described to me the 18/35 logo on the pint glass. Although I had read almost all the stories of polar exploration before my own Antarctic adventure six years ago I couldn’t remember the significance of those numbers. Surrounding us on the walls of the pub were articles covering Antarctic exploration. Crean was on teams led by both Sir Ernest Shackleton and Captain Robert Falcon Scott. As Michael Smith, author of “An Unsung Hero”, points out Crean spent more time on the ice than either of those two Polar heroes performing pivotal roles on three of the four major British expeditions to Antarctica.

Mark with Tom Crean Beer glass

Initially he served under Scott on the Discovery from 1901 to 1904, then on his fatal Terra Nova expedition to the South Pole from 1910 to 1913 and finally on Shackleton’s Imperial Trans-Antarctic Expedition on Endurance from 1914 to 1916.

It was during Scott’s ill-fated Terra Nova expedition when Tom Crean made the numbers 18 and 35 his own. At only 168 statute miles (270 km) from the Pole, Scott ordered Tom Crean, William Lashly and Lieutenant Edward Evans to return to base. Scott recorded the sorrowful moment in his diary: “Poor old Crean wept …” Scott went on to reach the South Pole only to find Norwegian Roald Amundsen’s flag planted there first. Scott and his team then died on the return journey.

As Crean, Lashly and Evans made it off the polar plateau one month after leaving Scott and the others, Evans began to display the debilitating symptoms of scurvy. In the harness for up to thirteen hours a day, Crean developed snowblindness and hauled the sledge, his eyes bandaged with a tea leave poultice. Risking crevasses, broken bones and certain death the three lashed themselves to the sledge and slid 2,000 ft onto the Beardmore Glacier to save three precious days of marching and food. But then Evans collapsed and with 2 weeks to travel before the safety of Hut Point, Crean and Lashly began hauling Evans on the sledge.

On the 18th February 1912 they arrived at Corner Camp with food running low. They had one or two days’ food left, but still four or five days’ man hauling to do. So, facing death, Crean volunteered to go for help. He had no sleeping bag or tent and was already physically exhausted. Lashly held open the round tent door flap to allow Evans to see Crean depart, Evans remembered: “He strode out nobly and finely – I wondered if I should ever see him again.” Yet, with only two sticks of chocolate and three biscuits (keeping one in his pocket for emergencies) Crean completed the 35 statute miles (56 kms) in a punishing 18 hours. The rescue was successful and Lashly and Evans were both brought to base camp alive. Crean more than earned the Albert Medal, then the highest award for gallantry.

Crean’s own survival, the rescue of his companions and his desire to return to Antarctica again despite this experience intrigues me. Simone and I travelled on to Dingle for the next couple of days and as I sat in the spring sunshine I thought about Crean and those explorers from 100 years ago. I can understand the motivation for Amundsen, Shackleton and Scott – the adventure, the recognition, the money and the influence. My own 43 days in Antarctica racing to the South Pole was fuelled by my desire to compete, to do something bigger than me, bigger than my blindness, maybe to take a small place in polar history. Everyone else, including me, seemed to have an obvious reason to be there. But why did Tom Crean keep going back? He was not an officer or a leader of any of the expeditions; he gained very little public recognition or wealth. So, what drove him to go? What allowed him to survive?

I asked Crean’s biographer, Michael Smith, and he said, “Crean was the type of man who wanted to see what was over the other side of the hill”. So, maybe curiosity and adventure were the drive. It also may have been that the other side of the hill was a great deal better than life in Kerry in the late 19th century; maybe joining the British Navy was just a job? But this was a job that required him to endure torturous conditions, to put his life on the line. The story goes that the men who joined Shackleton did so in response to his newspaper ad for the Endurance expedition: “Men wanted for hazardous journey. Low wages, bitter cold, long hours of complete darkness. Safe return doubtful. Honour and recognition in event of success.” I am interested in the type of people who would reply to such an ad, because I think motivation is rarely about the extrinsic factors, it’s rarely about money, recognition or status. They are all so easily granted and easily taken away. People like Crean have a drive that comes from somewhere else, somewhere deep within, something intrinsic.

Norwegian explorer, Fridtjof Nansen, whose name and face were on my skis that took me to the South Pole wrote about this:

“It is within us all, it is our mysterious longing to accomplish something, to fill life with something more than a daily journey from home to the office and from the office, home again. It is our ever present longing to surmount difficulties and dangers, to see that which is hidden, to seek the places lying away from the beaten track; it is the call of the unknown, the longing for the land beyond, the divine power deeply rooted within the soul of man; it is this spirit which drove the first hunters to new places and the incentive for perhaps our greatest deeds – the force of human thought which spreads its wings and flies where freedom knows no bounds.”

Perhaps Nansen articulates what we must try to find as we explore our own frontiers when he says, ‘…it is within us all…’ Whatever the challenge, the motivation to keep going must come from somewhere deep inside us. External motivators are always temporary. The answer to the question of why we do what we do is an internal one, often held privately, but one that if answered honestly will be the one that gets us there. I know that Crean must have had an answer to that question when he walked those 18 hours to cross those 35 miles of ice, uncertain if help would be waiting at the end. If he didn’t, he would never have made it.

Mark and Simone outside the South Pole Inn

Polar Titans & Our Own Intrinsic Motivation

Last Sunday I dropped into The South Pole Inn in Annascaul, Co. Kerry to honour Tom Crean. He was a titan of the heroic age of polar exploration. He was born in Annascaul and the pub he ran after his polar exploration ended in 1916 still serves beer and is a memorial to his incredible life.

Mark with Eileen Percival who runs The South Pole Inn

Mark with Eileen Percival who runs The South Pole Inn

Simone, my fiancé, and I toasted him with a beer named after him and Simone described to me the 18/35 logo on the pint glass. Although I had read almost all the stories of polar exploration before my own Antarctic adventure six years ago I couldn’t remember the significance of those numbers. Surrounding us on the walls of the pub were articles covering Antarctic exploration. Crean was on teams led by both Sir Ernest Shackleton and Captain Robert Falcon Scott. As Michael Smith, author of An Unsung Hero”, points out Crean spent more time on the ice than either of those two Polar heroes performing pivotal roles on three of the four major British expeditions to Antarctica.

Mark holding Tom Crean Beer Glass

Initially he served under Scott on the Discovery from 1901 to 1904, then on his fatal Terra Nova expedition to the South Pole from 1910 to 1913 and finally on Shackleton’s Imperial Trans-Antarctic Expedition on Endurance from 1914 to 1916.

It was during Scott’s ill-fated Terra Nova expedition when Tom Crean made the numbers 18 and 35 his own. At only 168 statute miles (270 km) from the Pole, Scott ordered Tom Crean, William Lashly and Lieutenant Edward Evans to return to base. Scott recorded the sorrowful moment in his diary: “Poor old Crean wept ...” Scott went on to reach the South Pole only to find Norwegian Roald Amundsen’s flag planted there first. Scott and his team then died on the return journey.

As Crean, Lashly and Evans made it off the polar plateau one month after leaving Scott and the others, Evans began to display the debilitating symptoms of scurvy. In the harness for up to thirteen hours a day, Crean developed snowblindness and hauled the sledge, his eyes bandaged with a tea leave poultice. Risking crevasses, broken bones and certain death the three lashed themselves to the sledge and slid 2,000 ft onto the Beardmore Glacier to save three precious days of marching and food. But then Evans collapsed and with 2 weeks to travel before the safety of Hut Point, Crean and Lashly began hauling Evans on the sledge.

On the 18th February 1912 they arrived at Corner Camp with food running low. They had one or two days’ food left, but still four or five days’ man hauling to do. So, facing death, Crean volunteered to go for help. He had no sleeping bag or tent and was already physically exhausted. Lashly held open the round tent door flap to allow Evans to see Crean depart, Evans remembered: “He strode out nobly and finely – I wondered if I should ever see him again.” Yet, with only two sticks of chocolate and three biscuits (keeping one in his pocket for emergencies) Crean completed the 35 statute miles (56 kms) in a punishing 18 hours. The rescue was successful and Lashly and Evans were both brought to base camp alive. Crean more than earned the Albert Medal, then the highest award for gallantry.

Crean’s own survival, the rescue of his companions and his desire to return to Antarctica again despite this experience intrigues me. Simone and I travelled on to Dingle for the next couple of days and as I sat in the spring sunshine I thought about Crean and those explorers from 100 years ago. I can understand the motivation for Amundsen, Shackleton and Scott – the adventure, the recognition, the money and the influence. My own 43 days in Antarctica racing to the South Pole was fuelled by my desire to compete, to do something bigger than me, bigger than my blindness, maybe to take a small place in polar history. Everyone else, including me, seemed to have an obvious reason to be there. But why did Tom Crean keep going back? He was not an officer or a leader of any of the expeditions; he gained very little public recognition or wealth. So, what drove him to go? What allowed him to survive?

I asked Crean’s biographer, Michael Smith, and he said, “Crean was the type of man who wanted to see what was over the other side of the hill”. So, maybe curiosity and adventure were the drive. It also may have been that the other side of the hill was a great deal better than life in Kerry in the late 19th century; maybe joining the British Navy was just a job? But this was a job that required him to endure torturous conditions, to put his life on the line. The story goes that the men who joined Shackleton did so in response to his newspaper ad for the Endurance expedition: “Men wanted for hazardous journey. Low wages, bitter cold, long hours of complete darkness. Safe return doubtful. Honour and recognition in event of success.” I am interested in the type of people who would reply to such an ad, because I think motivation is rarely about the extrinsic factors, it’s rarely about money, recognition or status. They are all so easily granted and easily taken away. People like Crean have a drive that comes from somewhere else, somewhere deep within, something intrinsic.

Norwegian explorer, Fridtjof Nansen, whose name and face were on my skis that took me to the South Pole wrote about this:

It is within us all, it is our mysterious longing to accomplish something, to fill life with something more than a daily journey from home to the office and from the office, home again. It is our ever present longing to surmount difficulties and dangers, to see that which is hidden, to seek the places lying away from the beaten track; it is the call of the unknown, the longing for the land beyond, the divine power deeply rooted within the soul of man; it is this spirit which drove the first hunters to new places and the incentive for perhaps our greatest deeds – the force of human thought which spreads its wings and flies where freedom knows no bounds.

Perhaps Nansen articulates what we must try to find as we explore our own frontiers when he says, ‘…it is within us all…’ Whatever the challenge, the motivation to keep going must come from somewhere deep inside us. External motivators are always temporary. The answer to the question of why we do what we do is an internal one, often held privately, but one that if answered honestly will be the one that gets us there. I know that Crean must have had an answer to that question when he walked those 18 hours to cross those 35 miles of ice, uncertain if help would be waiting at the end. If he didn’t, he would never have made it.

Mark and Simone outside The South Pole Inn

On Being a Realist

On the 18th July 2010 I was lying in the acute ward of The National Spinal Injuries Centre in the UK. It was two weeks after my fall, I couldn’t feel or move my legs, I was pumped full of morphine and despite all of this I was feeling lucky to be alive.

As I lay there in the middle of the night I wrote a blog called, ‘Optimist, Realist or Something Else? I was surrounded by guys who were paralysed from the neck, chest or waist down and I was better off than many of them and worse off than some. I could acknowledge that they were paralysed but the question that I could not answer was: “Am I going to be one of these guys?”

And, as I wrote the blog I remembered a book that I had read called ‘Good to Great’ by Jim Collins. He spoke about the Stockdale Principle, a principle based on the experience of long-term prisoners of war and how the optimists were not the ones who survived. Realists did. The reason for this was that the optimists thought that they would be free soon, so they never faced the reality that they may never get out. As a result they were constantly disappointed, demoralised and died in their cells. Whereas the realists dealt in facts, faced the reality of their current circumstances. They were the ones to survive.

This is why I titled the blog Optimist, Realist or Something Else? In those first couple of weeks I questioned if I should be super positive and say – I will make a full recovery – and risk being a Stockdale optimist. I also wondered – should I be a realist and embrace the fact that my legs are not working and therefore are unlikely to recover? But if I did that I feared I would potentially shut off the power of my mind and body to recover in ways that we don’t yet understand.

Looking back I can see how being an optimist was the easy option because it doesn’t demand an examination of the facts. Yet my reluctance to be a realist was misplaced and left me looking for something else. But there is nothing else, being a realist is the only option.

Now, as a realist I have been able to deal in all of the facts. The fact is that I have a catastrophic spinal cord injury. The fact is that I am paralysed and cannot move anything below my waist. The fact is that finding a cure has proven to be impossible up to this point in history. But it is also a fact that human history is made up over and over again of accounts of the impossible made possible through human endeavour.

I don’t believe that there is any need to worry about being a realist. Being a realist allows us to examine the full suite of options and that includes as much despair, as it does acceptance and fantastical hope.

Mark in Wheelchair

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

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



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