Red Bull Racing and Wings for Life World Run

I was thrilled to talk to Red Bull Racing last week, to help Wings for Life build support for the World Run. The team gave me a fantastic reception, and I hear my story made a really big impact, with lots of people signing up to run. Result!!

At last, the films!!

Hugely excited to now have the green light from Johnnie Walker to share the film of last year's trek in the Himalayas. This has had a very powerful impact on those who have seen it. I hope you enjoy it and I think you will. If you do, please share the link.

There are two films. Here's the link to the shorter one.

Many thanks to our film crew - Mike Rogers and Meghan Shea at Persistent Productions, Deepak Chaturvedi and Annette Fausboll and the team at Ugly Duckling Projects. Fantastic work!

Exo skeleton - after 6 sessions

Progress, for sure…..but not in the way I expected when I started on the program.

The biggest change has been that the exo has given me much greater clarity about the bad habits I've developed, and what needs to be done to break them and retrain my walking patterns.

For the last 4 or 5 sessions, my physios, Colbey and Heather, have changed the settings of the exo, so that the machine is actively controlling just my left leg. In that setting, my right leg gets no active movement support, but it is fixed in its range of motion. That forces me to move my right leg in the correct manner, because it makes it impossible for me to use the compensatory strategies and bad habits I have developed over the last few years. In particular it stops me swinging my right leg round and out in a straight leg circumduction, and forces me to instead bend and lift my right knee, then swing through with my lower right leg and get a right foot heel strike. Or at least that's the plan!

When they first switched the settings, I found it almost impossible to move my right leg. That's when the penny started to drop, because then I learned that I could only walk using the "cheats" I'd developed. If you take away my cheat strategies, I can hardly walk. That was a big moment.

I did get going though, and since then I've made good progress. Here's a video from 2 weeks ago. You can see the effort it takes me to move. And you'll see that I'm still having to try to move way over to my left during my right leg swing phase. Colbey is trying to counter that, and help me put less weight on the left side during my left leg stand, and shift more weight to the right during my right leg stand. I'm also working really hard to get right leg knee lift, swing through, reach and heel strike. Vey hard work!

For the last few sessions, we've added a couple more things. Last Monday, I spent time on an anti gravity tread mill (AlterG). I don't have any pics, so I'll try to describe it. You put on something like a pair or rubberised cycling shorts with a very wide, zippered waist that is used to strap you into a waist level harness over a treadmill. That can then be raised or lowered, to share the support of your body weight between you and the machine - at one extreme, the machine takes all your weight, at the other it gives you no support. With the machine taking your weight it allows you to focus on correct movement of your legs. The  machine also has cameras at feet level and a TV screen, which gives visual as well as physical feedback. I loved it! Last Monday I tried a 20 minute session before the exo. That was great, but I think I might have pushed it a bit hard (that happens!) and run into a bit of fatigue during the exo session.

On Tuesday, we tried electrical stimulation on my right leg.  I have a problem with right foot drop. My toes tend to point downwards, and every now and then I catch my toes, trip and fall. That makes me anxious and the anxiety feeds into my movement patterns.  The stim helps promote better dorsi flexion in my right foot, so that on the swing through my toes lift and I get a better heel strike. Here's a video before Tuesday's exo session.

We then tried using the stim whilst I was in the exo. That had mixed results, mainly because it was hard to get the two pieces of technology to work well in tandem, not really because of any physical challenges.

So far I've used the walking frame during the sessions. Not sure that's a great thing. The wheels don't track straight, which adds to the challenges. Plus, I never walk with a frame outside of the exo sessions, so it doesn't reflect a walking pattern in any other circumstances. This week we try to move off the frame and onto sticks. I think that will be better - looking forward to it!

Anyhow, I reckon I now have a much clearer understanding of what gait issues need to be corrected and how I go about doing that. I'm working on complimentary exercises at home and the gym. I'm starting to get stronger and better movement patterns. My wife and others are noticing that. There is still a lot of pain, but I'd say there is some slight improvement. And, because I've been driving myself on the 2.5 hour journey to and from Aylesbury, I've regained a lot of confidence in my driving - and have started to enjoy that!!

On the right track!!

Exo session 1

Here's a video from my first session last Friday. 

The exo skeleton has 3 progressive modes. For this session, it was set in the middle mode called adaptive (or Active Step). In that mode, if I've understood this properly, the machine is responsive to my ability - if I get my gait right, the exo will progressively back off and allow me to walk freely, but if I make mistakes, the exo will immediately take control and correct me. In that way, I should relearn a correct step pattern. Sophisticated stuff. 

You'll see that for now I'm working with two physios and a walking frame. As I progress, the physios should become less actively involved and I will move off the frame and onto walking sticks.

My main gait issues concern uneven weight shift and timing: I do not shift my weight properly onto my right leg, and move too quickly through the stand phase on my right side. Much of this session was about trying to  correct those issues. 

I had two big obstacles. The first is muscular tightness. I have tight muscles throughout my body, but it is most severe in my right side from beneath my rib cage, through my hip and into my quads. What I hadn't realised till Friday is that the effect is to produce a powerful right to left twist as I move my right leg, which you can see in the video (and I suspect it is that twist that causes my right foot pronation and toe drop).  The other is high frequency hearing loss, which is unrelated to my SCI. On the video, you will hear (I'm told!) two beeps as I move my left leg, and two beeps as I move my right. Those are prompts to tell me when I have moved my hips sideways and forwards to the correct point. The problem is that I cannot hear all the beeps! As a result, I found it hard to get the timing right, and when the machine then corrected me, I shifted to default movement pattern, trying to use my strength to control my movement, which resulted in me fighting against the machine. So, I found it difficult to get into the groove on Friday, but hopefully that will come in the next few sessions. 

To benchmark progress, here's a clip of a timed 10m walk during my assessment the prior week

And here's a short walk after session 1.  

Exo skeleton

In the 6 months since I left Singapore, my levels of neuropathic pain and spasticity have increased substantially. The main causes, I'm told, are the colder weather here in the UK and the constant stair climbing in the house we chose for our first year in Bath. These issues have worsened my gait - less knee lift, more toe drop, less stability, greater trip risk, and now I walk with a stick, having gone more than two years without any walking aids. I think this is temporary, and I'm working with my physio on a program that is helping, but I need to find a way through this as soon as I can, and to get back on track.

Today I start a 10 session program with an exo skeleton. The exo is a wearable, bionic suit originally deigned for military applications but now also used to help people with paralysis stand, walk and retrain step patterns. Here's a link to the developer's web site.
http://intl.eksobionics.com

There are several reports that users are experiencing other improvements with SCI issues - bowel and bladder control, pain and spasticity. Its very early days for the technology and there are no clinical studies and no guarantees, but there is hope that it will help me.

I'll post videos and updates as I go. Wish me luck!

Pangong Lake

The last three of Scott's photo's, taken by the side of Pangong Lake. Pangong is probably the most remote and achingly beautiful place I've ever had the privilege to visit, and a fitting place to end the trek. I've uploaded photos of the lake previously, so check out prior posts for those images. 

These photos mean just as much, if not more, as they show the celebrations of a group of people who came together as friends or acquaintances on a project, and left after an amazing experience with bonds that run deep.

Scott Woodward, thank you for making these fantastic images. I know that the people who have seen them so far have enjoyed them very much. Hopefully they will get the bigger platform they deserve.

So now we wait for the release of the films. The Johnnie Walker team tell me they will go live some time in March. Its been a long time coming and frustrating wait. You'll soon get to see the incredible work of Mike Rogers, Meghan Shea, Deepak Chaturvedi and team. Its worth the wait. I promise!

Day 6 - the last day of the trek

A short, easy trek out of the valley to join the vehicles waiting to take us on the 8 hour journey to our post trek R&R by Pangong Lake on the border with Tibet. 

Alan and Rigzin went ahead and suspended prayer flags over the road to form our surprise finish line, and the start of our celebrations. 

I held it together for a little while, even as Greg and I thanked Alan, with his great big heart, for all he'd done. 

And then, as I walked away towards the cars, I was hit by a train of 3 years of accumulated emotion, by the realisation of how hard I'd worked and who I'd become, and by a sense of enormous gratitude for my good fortune. 

It was a huge moment for me, and it was great to be surrounded by those who had made it all happen. Greg, Angie, Viv, Alan, Rigzin, Mike, Scott, Deepak, Priyanka - thanks guys!

Day 5: Hemis Shukpachan to Ang

The most challenging day of the trek. 9.6km, over two high passes. Greg was recovered and the group was well rested and recharged after our scheduled two night stay at Hemis Shukpachan, where we were blessed by the warm hospitality, great food and colourful entertainment from Stanzin Noryang and her family.  

We moved on through ever more spectacular scenery, reaching the start of the ascent to Mebtak La, at 3,900m the high point of the trek, a long, lung-busting slog up steep, switchback paths that were covered in the finest scree, and in parts no wider than our boots. 

This was a mighty climb. It called on every ounce of our physical strength, and all the determination, resilience and courage that Greg and I had accumulated over the years. Greg had to climb this whole route sideways, and he will always be thankful to Rigzin who scrambled alongside but downhill of him in the sand, using his boot to re-inforce every sideways step of Greg’s crutches. 

Up ahead, Alan kept me moving safely and steadily, gasping for thin air whilst appreciating how resolute my injury has made me and experiencing deep gratitude and true elation. The trek down to our campsite at Ang was a celebration, and dinner that evening was topped off by a chocolate cake make by our cook Gelle Sherpa!  

Day 3: Yangthang to Hemis Shukpachan

A big day. A long, demanding climb up to the highest point of the trek - the Tsamarang Chan La pass at 3,900m - followed by a long walk down to the next camp at Hemis Shukpachan. 8.5km in total. This was a day for which we needed all our energies – but early in the morning Greg was struck by illness. 

As we climbed steep, narrow, sandy paths, Greg became ever more dehydrated and fatigued. He had to dig very deep within, I found myself acutely focused on helping him pull through, and we learned a great deal more about each other. It was a day of soul searching, intense reflection and great triumph. A few tears were shed on Day 3!

Day 2: Sumdo to Yangthang

Early wake up, cardamom tea and washing water brought to our tents, morning stretch, big breakfast whilst the crew packed up the campsite…..that became our routine, and a great way to start each day of the trek. Alan planned for us to start off by 8am at the very latest…...so we left Sumdo around 8.45 (by the end of the trek Alan gave in to our tardiness!).

We reached Chagatse La at 3,800m - our second high pass and the half way point of the day's 5.5km trek. 

I've added a couple of Alan's photos to show our campsite at Yangthang. How privileged we were! 

My memories have faded a bit now. What I do I remember is ……..feeling ever stronger on the trek, despite the more challenging terrain; Greg setting up his canvases for the afternoon - the rest of us were mesmerised as two of his four paintings emerged; a stretching session with Viv in what must be the world's best therapy site; Angie, Priyanka, Viv and me soaking our feet in a bowl of the most refreshing water from the camp's mountain stream; a fun filled ride on the back of a truck to a very warm welcome and mint tea in the local village; and Alan delighting the locals - he and Rigzin had stayed here in February, and Alan gave them photos of their families and friends, as he'd promised them he would.