A Growing Desire For Adventure

No traffic, no meetings and no rush. It is a place where the wild rainy weather we are having is described as a ‘soft day’. There is time out here. Time to think. And it seems, time to get excited about life’s incredible possibilities.

Since my accident, and the paralysis, I’ve been busy trying to accept the day to day realities of life in a wheelchair. The effect on me personally is, in a sense, easy to imagine. But this injury has also hit Simone in a way that I suspect I don’t truly understand yet. I am not sure if I can acknowledge the pain my accident has given my family and friends. It has taken such a long time to deal with the initial phase of this life expedition.

I just read Jessica Salter’s article int oday’s Daily Telegraph Magazine. ; I first met Jessica in 2008 when I was in London at the launch of the South Pole Race. At the time she worked in The Telegraph Online, which covered our part in the race. Recently I spoke to Jessica at length about the accident and ensuing difficult times. Reading her article has fanned the flames of my desire to get back into the adventure arena. It has made me conscious of the importance of actively deciding how we fill our lives. (The article)

The article reminds me of how important the South Pole experience was. Of putting myself in an environment where I risked failure, where I had to push beyond my expectations of what is possible in order to succeed.

Ross Whitaker has just released our documentary about The South Pole Race, called “Blind Man Walking”, which is available on Amazon

And my point? Since this accident, I have had no desire for adventure. I suspect my mind has been cluttered with the drive to survive. But, in the last few weeks it has been full of memories. I’ve been in deserts, inside the Arctic Circle, and on angry seas. A collection of memories that I didn’t see with my eyes, but experienced through adventure. I’m feeling that I need to step outside the routine of my life to focus on the simple day to day of an expedition.

I have lots of work to do to simply survive this. I have lots of work to do to try to walk again. But the perspective that expeditions bring to life might just be what I need.

Let me know if you have any adventures planned? Or better still if you are in the middle of one now.

External Robotics & Internal Biology

I stood, I walked and I did it in a robotic exoskeleton. This is no miracle and it is not the end of the story. But it is the first iteration of a device that some day very soon might offer an alternative to a wheelchair. My experience is that Ekso can’t go up stairs and it isn’t for outside use yet. But it is close and it looks like there are enough people prepared to challenge conventional wisdom to make it happen.

Now, I’m in Carlsbad just north of San Diego. I’m back at project Walk (www.projectwalk.org), one year after my first visit, to continue my ongoing exercise based recovery experiment. In short, I am using patterns of exercise to try to stimulate my nervous system to open different pathways around my damaged spinal cord. The ultimate aim is that I will reconnect my brain and paralysed muscles. And, on first assessment I’m stronger than the last time I was here in Project Walk.  

There is no doubt that this has been an inspiring week for me and there is hope in the future that I might walk again. But life isn’t about the future. It is about experiencing life as it happens. As the days roll by in America and my mind races with what might be in the future, I’m in danger of missing the experience of life outside spinal cord injury. So, time to relax Californian style as the weekend hits.

If you’ve any thoughts about balancing acceptance of now whilst keeping hope alive for a better future please leave a comment!   

Walking In Robotic Legs!

Yesterday I was rolling around Alcatraz in my wheelchair, today I entered the HQ of Ekso Bionics (www.eksobionics.com) to try and walk. I’m just south of San Francisco in the university town of Berkeley and I’m here to try out a robotic exoskeleton called Ekso.

As I sat with the lead PT (physiotherapist) we talked about my expectations. I knew the device had solid bars running down the outside of the legs and that motors at the hip and knees would power my legs. I was aware that I would have a computer and battery pack on my back to help co-ordinate the movement of the legs. And I knew that people with similar levels of injury to me had been able to use the device successfully. What I didn’t know and neither did the guys in the company, was how the blindness would impact my chances of success.

I was assessed, measured, tested, questioned and eventually I was strapped into the device. As I sat there listening to the instructions, with three PTs on standby and a safety harness attached somewhere high above my head I just couldn’t wait to get up and walk.

But 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. Maybe exercise-based recovery like my Project Walk or Standing Start training will allow me to walk again. Or maybe some revolutionary new treatment will emerge in the field of medicine. But I can’t help thinking that these robotic legs will be part of the overall solution and there I was sitting in a set of them with the chance of walking.

I leant forward onto a walking frame. One of the PTs hit the stand button and I rose out of my chair and stood. Everything that I had been doing in my hospital rehab programme with Amanda, my Project Walk and Standing Start training and my  daily exercise regime with Simon back in Dublin was important in this moment. My experiences of being unstable, of getting stronger and of being upright all combined in this single moment. It was incredible and I hadn’t even taken any steps yet.

Like we discussed in the briefing, I transferred my weight onto my left leg and then forward. “Step” said the PT, a button pushed and my right leg took a step. Then I moved the walking frame forward, shifted my weight onto my right. “Step” and my left took a step. Walker forward, weight shift, button pressed, step completed. Left, right, left, right, left, right, left.

I was up and walking. I had no idea of the time but the PTs were giving me my ratio of standing time to walking time and number of steps. As we passed the first hour it looked like I could start to be part of this exciting innovation in robotic technology. But the walking frame wasn’t the end game, crutches are next and so my walking experiment continues tomorrow. Photos and videos to follow!

Walk before you can run, crawl before you can walk

We’ve been back from Project Walk for nearly 3 months now and I’m balancing training in hospital with Project Walk training in my old university, Trinity College Dublin. I’m training between 12 and 18 hours per week at the moment and this video shows me getting right back to basics by trying to crawl:

“South Pole Simon” O’Donnell, my trainer and one of my team mates from the South Pole Race 2009, trained with me at Project Walk in California. Now he is training me back home and helping me to push the boundaries of what my paralysed limbs can or can’t do.

Before the South Pole Race we had training videos of sprinting whilst dragging tires behind us and doing hand stand press ups. The sort of stuff that we could brag about. But now it’s about learning how to crawl and I’d imagine the video doesn’t look so good.

My hope is that this type of aggressive physical therapy programme will produce some improvement in my paralysed legs. At best the prize for the current indignity could be walking. And at worst, it will keep me fit and ready for any medical interventions that appear in the years ahead.

Reading letters with my tongue

Today, I tested a device called a Brainport. It allows blind people to perceive objects using a camera mounted on glasses which sends the image to an electrode held on the tongue. The tongue receives the pixels of the image as current which the brain sends to the visual cortex to decipher.

Still at the research stage of the development, today I took part in a trial of the device which is about to be put forward for FDA approval and hopefully commercial availability. It wasn’t like normal seeing, but it was similar to the alternative sense of vision that I get from touching things.

The difference is I could see a letter on a card that I couldn’t feel with my hands. I’m in the U.S. at the moment taking part in an intensive physical therapy program at Project Walk in southern California to try and regain feeling and movement in my paralysed legs.

This program and the Brainport use the principles known as neuroplasticity – that the brain and the nervous system is plastic, that it can adapt and re-learn new ways to behave after such catastrophic injurie. Five weeks in america and I’m leaving with hope for both my vision and chances of getting out of my wheelchair eventually. Exciting!

Super squat videos from project walk

The above video shows me trying squats at a walking frame, while the one below is me doing squats on a Total Gym.

 

Working my paralysed legs over the past four weeks has provoked a connection to my legs.

The feelings are not normal but rather a general sense of my legs, a connection with the ground and sometimes a feeling of warmth and pulse.

Both videos, courtesy of Simone, show me performing modified squat exercises helped by my trainer and my non paralysed muscles above the injury level. I am not using my legs as such.

However, in both cases I feel a sense of connection through my legs that does not happen when I don’t try to use the muscles below my injury level.

Traditional rehab methods tend not to use these techniques and that is why I have asked my south pole team mate, Simon O’Donnell, to come out to california and learn the project walk training methods. He will support me to follow a daily rehab programme when we get home. I think we’re experimenting in the area of neuro plasticity which is a relatively recent field of study for people with spinal chord injuries. So, as an introduction to the topic, I’m reading am audio book called the brain that changes itself.

If you have any thoughts or resources on the subject please let me know!

Simulating Walking at Project Walk

Above is a video of my recent walking simulation at project walk.

The theory is that if i want to get any feeling or movement back in my legs then I better try and use them. The video captures my first walking simulation held up in a harness, on a tredmill and with three trainers.

I can’t walk or stand and the video shouldn’t be misunderstood. I am exercising with massive amounts of assistance not walking on my own. However, this is the start of a long experiment to promote changes in my nervous system that will allow me to walk at best and keep fit at worst.

Either result isn’t bad!

Back Rowing At Project Walk – The Video

Check out a video of my first faltering strokes on a rowing ergometer at Project Walk.

I thought that rowing without the use of my legs would be a complete waste of time but, with the set up improvised by Margarita at Project Walk, I was able to give it a go. You’ll notice that I’m using parallel bars and my arms to do much of the work and the set up is allowing me to work my stomach and my lower back as well.

However, in these early stages as I try to connect to my paralysed lower half, the key is to exercise at all times with weight bearing loads through my feet. Although I’m not using my legs, there is weight being transferred through my limbs to my feet during the partial rowing strokes that I’m taking.

It’s not pretty and it’s not going to win me medals any time soon. But as part of the overall programme of thousands of weight bearing movements, it might just help my nerves to re-route around my injury site in my spine and gradually connect the brain and the muscles.

 

A Video From Inside Project Walk

Apart from the usual blog articles, Simone and I are experimenting with video and audio during the next month at Project Walk. The following link  is our first video taken on an Iphone and uploaded directly to YouTube. I’ll try to get some audio podcasts up here also when I work out how to use AudioBoo on my Ipad.

Day 1 At Project Walk

We’re on a ten lane freeway in California. The sun is shining through the window, hot on my face, Simone is driving and I am buzzing.

I just spent two and a half hours at Project Walk (www.projectwalk.org)  trying to move sleeping muscles that have been under the grip of paralysis for months now. We’re not messing around with my upper body – it works after all – we’re just focusing on my paralysed legs, hips and gluts. Today I was lying on my back trying to cycle my legs in the air with the assistance of a trainer, doing assisted squats on a machine, cycling on a standard spin bike, with assistance, using my abs, hips and momentum to keep it going and standing on a vibrating plate with the help of parallel bars and a trainer.

Conventional wisdom suggests that I will not walk again. The script seems to read that I’ve been saved from death, stabilised in hospital and now I will remain in a wheelchair. But I’m not ready to let conventional wisdom determine my future.

Nobody can honestly predict what will happen, but I’m pretty sure that if I spend the rest of my life sitting in a wheelchair there will be little to no chance of me springing up one day and walking. I’ve got to get on my feet, which started in Dublin with my physiotherapist Amanda, and start trying to use the paralysed muscles that have been wasting away for so many months now.

At Project Walk I’m not constrained by conventional wisdom. Nor am I banking on any miracles here.  The philosophy is simply to get out of the wheelchair, to work the nerves and muscles below the level of my injury and see what happens. It seems to make sense in principle doesn’t it?.

When I used to row I completed hundreds of thousands of repetitions of the rowing movement in boats, on machines and in the gym. When running with back packs in the Gobi desert we built up tens of thousands of steps with progressively heavier back packs. And when preparing for the South Pole we recreated the cross country skiing motion, day after day for months, dragging car tires on the beach, with weights and pulleys in the gym and on snow in Norway. I was never going to compete in rowing, desert running or polar expeditions by sitting on my ass or lying on my back. And my gut feeling is that I’m never going to stand or walk, even a few faltering steps, if I stay in bed or sit in a wheelchair for the rest of my life.

Who knows what will happen and maybe I will never walk a step ever again. But I think it’s worth exploring the boundaries. Let me know what you think – Worth trying? Or a waste of time?