Hi Russ,

I am a member of The Hogarth Health Club and read about your life changing accident on the noticeboard. I then recently actually saw you training in the gym and, honestly, seeing you pushing yourself literally overwhelmed me to tears. We are lucky to live in a world where causes such as yours are highlighted to us in the media and magazines and the news but to actually witness you training was amazing for me, and so deeply inspiring. Most people moan and whinge and struggle to get to the gym but to see you and your determination, the drive you clearly have and the way you feel sport is your saviour is so incredible. I truly believe exercise is a life changing/mind altering thing and can alleviate all forms of depression too. I wanted to also ask, has
your charity organised any spaces for the London Marathon 2015? If it has and there are spaces still available I d love to run to raise money for your charity. I have a place via my husband s company but I d really love to run it for a charity I feel passionately about and right now you and your situation and this charity you created don’t seem to leave my thoughts…

Wishing you all the best

Anna x

Amber’s ‘to do’ list, compiled today

Shark diving
Bungee jumping
Parachute jumping
Sky diving
Tower leaning
Powder skiing
Water skiing
Learn how to surf
Diving
Skateboarding
Windsurfing
Wake boarding
Wreck diving
Safari
Ride an elephant
Jet pack

As it’s only the last 2 that I haven’t  done, I think she’s taking after her Dad, which makes me smile.

What would I do? 4 months is nothing; a drop over a lifetime. I would cease the opportunity for both me and my family and would give great gratitude for the opportunity. Remember this is not just for you but a trial for science and medical progress.

I am so thankful this light has turned on for you and that these skillful researchers have given you every bit of attention and depth of reconnaissance you needed.

So having undergone a plethora of tests, Pia ( to whom I am eternally grateful for looking after me for a week) and I sat with Dr Susan Harkema and Dr Michael Stillman for about 2 hours.

They talked about me, and their conclusions, based on the results of all they’ve done, and what     my next steps might be in this Christopher Reeves Foundation Victory over Paralysis assessment  week

They mentioned a few things that gave the impression that I was in a good way compared to ‘most in my situation ‘. I weigh 12stone 4 lbs, approximately 20 lbs adrift of my pre injured self, about right given the wastage in my legs and bum.

My pulse of around 40 is ‘comparable to a good marathon runner’  they said. Michael called me ‘jacked’ – that’s the USA equivalent of ‘hench’…. ie well muscled.

My body fat was described as kind of crazy, given my condition, at 11% only. My bone density, and heart are well above levels of health expected- my heart ‘ that of an athlete ‘.

So, where does that leave me? I can’t just sign up to have an epidural implant, as all that stuff is still very much in the trial/ experimental stage, but they have other trials too.

They made it clear that I am a good candidate for a 4 month visit to partake in a trial that would involve a lot of physical exercise/ electronic muscle stimulation, and standing in a frame, whilst receiving electrical stimulation.

They would expect a lot of health benefit to me, by partaking. As well as regaining lower half muscle, they’d work on my torso, predicting a gain of a couple of vertebrae’s worth of muscular functionality. It occurred to me that a well as perhaps giving me better sitting down stability, it would help me to sit ski and maybe paddle a kayak… and from a being able to work perspective, increase the range of things I could do, without toppling out of my chair, either onto the floor, or into the patient’s lap – neither being that professional.

They seemed certain that physical improvement would be the outcome, and that’s something that’s worth having, if you’re me.

The logistics and expense, both monetary and emotional, of being away from home for 4 months is of course a factor, but the medical benefits to me, for the rest of my life, would be significant. I’m not expected to start next week or anything, but delaying it unnecessarily seems illogical.

The Frazier Rehab centre here makes Stoke Mandeville Hospital  look fairly backward – not that I ever felt it was at all ‘cutting edge’ to be honest.

So, a bit of thinking to do, and arrangements to be made. Just as we are about to move into a far more suitable property for me, having sold our lovely house, I’m contemplating moving to bloody America…

But what would you do?

So I’m in Louisville, spending most of my time wired up to things.

Most of my leg hair is shaved off, leaving them pretty sausage like. Not long ago, they were very muscular, now really far less, and covered in red marks from having electrode pads stuck to them, then pulled off almost sadistically by nmerous medical physiologists and their associates. As I cant feel it, it’s all fine. If I could, I’d probably have had enough of it.

Not since Toulon have I spent so much time attached to very sophisticated machines   Then, they were keeping me alive, now it’s all about seeing how much of me works.

X Rays, scans I’m used to, but being put in a massive baby bouncer and suspended over a treadmill, with 3 people making my legs move in a walking simulation.. was odd. It’s been 16 months since I’ve walked, so seeing myself doing it, assisted, in a large mirror, was strange. What I had to do was keep my arms moving in time with my feet. When you can’t feel your feet, thats easier said than done . If you’ve ever thought about it, as your right foot comes forward, so does your left arm, and vice versa. When you can’t feel your legs moving or your feet hitting the  ground, your arms easily fall out of sync, and before you know it, it’s all the wrong way around.

Apparantly, I was quite good… faint praise really, given I’d had 46 years of practice…

I’ve had my medications analysed, and related my history over and over, I’ve been strength and posture tested in various rooms. Whilst sat in my chair, I’m fairly strong, out of it, sitting on say, a plinth, I just wobble about, having to hold on to something all the time

Good news, my resting heart rate is back to pre Injury at 38 per minute. Mind you, given my heart only has to pump blood strongly through less functional body mass, they say it’s normal to have a lower pulse rate. Still, back as recently as February, my pulse rate was 70, so I should be happy with the improvement.

Tomorrow, more scans – bladder and kidneys – to see why I keep getting infections- I might have stones they say, much more common when your spine is severed.

Thank you to all those that have sent me links to the incredible story of the Bulgarian fireman stabbed 2 years ago right through his spine, and now walking thanks to cells from his nose transferred into the gap in his spinal cord.

So I’m in America just as it’s all happening in Poland. If it doesn’t work out here, I’m on Easyjet to Warsaw next week. Not only are the Polish painting and renovating half the houses in London, they’re also now  fixing spinal cords.

Is there nothing they can’t mend?

I’ve spent this last week trying first to stay alive, no small feat given my recent run of luck, and secondly in good physical health.

Its important for me that I arrive in Louisville in the best shape possible. Gym everyday this week then – the arm bike, stretching and weights. Adam and Alison and Cherie have all done their bit for me, as always.

I I leave in the morning, to arrive tomorrow afternoon. A day to reaclimatise, followed  by the initial assessment and introduction to the medical team there on Monday morning.

I’m Both curious and nervous- this could lead to me standing up, all by myself, or possibly more, things that we all take for granted, right? Well not me, not any more. Now I take nothing for granted. Physical function and capability is every human being’s right, isn’t it?

And then it gets snatched away.

Maybe I’ll get to snatch it back?

There was a programme on BBC2 last night ( in Britain) that featured the work that’s being done in the South of the U.S.

The team in Louisville is getting paralysed people to move, feel, and stand up.

Its to all pretty incredible, but to the paralysed it’s  far more than that. It’s a glimpse of the future- that being a place where there is a cure for Spinal Cord Injury.

So click on/ touch/ copy this link to see what’s going on there.

http://bbc.co.uk/trustme

I’m heading to the same facility on Saturday for an assessment – the first step on the lofty ladder, but a big one for me nonetheless.

So having been henceforth condemned to the carrying around of an Epipen for ever, in case of fatal exposure to a hazlenut, I have also succumbed to yet another urinary tract infection.

If you don’t have an injury to the spinal cord I would imagine that it’s quite uncomfortable. For me, it’s more complicated.

1. My bladder just releases pee at intervals of about half an hour.

2. I am in internal distress all the time

3. My legs spasm and twitch constantly

4. My lower left back does too.

5. In self catheterising to release urine, (instead of it just spurting out), my legs and back spasm violently, knocking me over in bed.

I can’t say that it’s much fun. I’ve slept really badly, and am constantly trying to clean myself up.

I try to stay positive but it’s not easy.

Yet more drugs will resolve this.

I take more tablets in a week now than I took in a lifetime pre injury.

And I really don’t like it.

I do hope that my trip to the States next Saturday leads to something. There is absolutely no guarantee, but God, I am crossing my fingers.