Monthly Archives: April 2016

The ongoing usual.

Despite my best efforts to ignore them ( impossible ) my spasms continue unabated. Last night they were non stop through the night too, obviously limiting my sleep.

I try to tire myself out each day to increase my likelihood of sleep. Every day, but one. for the last 2 weeks , I’ve done up to 2 hours arm biking on a stationary trainer, which does exhaust me. My legs jerk throughout my time on the bike, despite being strapped down tightly to metal parts of the trainer. I have to try very, very hard to arm pedal through the mental distress, normally trying to take my mind elsewhere and having the radio on very loudly.

The result is that I’m definitely fitter, a bit tanned from being outside too, but overall possibly spasming more of the time than before.

I can’t really win, can I ?


Changing the subject, I’m very glad that the families of the Hillsborough football disaster have finally recieved some justice. I was 22 when it happened , and at the time probably most of the dead were older than me. Today I looked at the pictures of those same dead and they were definitely all younger than the age I am now, some far younger. Their youth makes the disaster seem even more awful than it was already.

Again I find myself in tears.


Actually, on reflection, I can’t wait 4 months, not now I know there’s a glimmer of hope of improvement ahead.

It’ll be possible to get this done in the near future ( unless the medics actually decide it’s not a good idea after all ) so I’ll go for the earliest date that is offered to me and opt to miss out on anything else that I had in mind.


Right, so having now seen an X-ray taken of my spine today whilst sat in my wheelchair  ( all previous ones were with me on my back ) it does explain a lot.

There’s a 36 degree curve in my spine.

Yes, THIRTY SIX  degrees.  That’s almost bloody diagonal.

It means that I’m ( laterally ) like the Hunchback of Notre  Dame.

Being straightened will mean that everything I do  will be easier. They would put screws and rods along the whole length of my spine ( in itself not good ) but the result will be symmetry at last.

Personally I can’t bloody wait to get it done, but for various reasons it may not be til August.

There are risks of course, but I couldn’t give a flying F about those, to be honest.

I’ll be a long time in surgery, then a spell in Intensive Care, then in hospital for 10 days, then   3-6 months in a  brace without vigorous exercise ( in case the whole lot falls apart )

Oh, and he warned me that I’ll feel very rough for a while.

If only.

Two nights ago I dreamt that I could walk – not very well, but just enough to do a few things, and significantly well enough to  no longer use a wheelchair.  In my dream it seemed that I’d just forgotten that actually I could walk and that I just hadn’t tried enough to do it.

When I woke up, I fully believed the dream to be reality.

The realisation that it was just a dream was truly heartbreaking.



If you like music, go and see my superstar buddy, George Morgan ( appearing as ‘Beach’ )

Ive known him since he was a baby and now he’s 23 and been signed by Sony …

See him now for a few quid, before he’s selling out the O2 and you have to pay £60 a ticket.

He was amazing last night in Shepherd’s Bush.


Also, happy 18th to my nephew, Morgan!

This week.

Conversation overheard by me from front of car :

‘ If you had to, would you go out with a picture of a vagina on your forehead, or five penises on your back?’

I know what I’d choose.


This week I  am involved in 2 research projects. One is trying out an Exoskeleton suit ( probably my first ‘walk’ in nearly 3 years in a couple of days time ) and then an experiment in Loughborough involving core temperature differences between the Spinally Cord injured and ‘ normals ‘ – necessitating me swallowing a special pill to record inner temperature.

I’m not sure if they want the pill back or not, but good luck if they do.


This Friday I have an appointment with a spinal surgeon ( in fact the same doctor that oversaw my return to Britain in August 2013 ) to talk about straightening my very wonky spine.

I really don’t like the fact that the 60% of me that doesn’t work is not even lined up with the 40% that does.  I am constantly leant to my left, without any ability to right myself.

I’m expecting him to play down the improvement to be gained, as there’s more to it in my case ( like the fact that I have more muscle that works on my left side, which also pulls me in that direction ) but if I could be a few degrees straighter it would be well worth it.

Fingers crossed then.

PS Not yet had MRI results.


I don’t have anything particularly wrong with my urethra or bladder, is the verdict so far.

Whilst that’s good news, it does nothing  to explain my continuing spasm torment.

I’ve just had my MRI also, and await the results of that.

Thanks to Jonny for helping with my arm bike repairs, and to Simon at The London Bicycle Workshop  ( 373 King Street, Hammersmith ) – where all cyclists should go for services.

Thanks to Pia for helping me at the hospital, and to Saz for her input into some other stuff.

Also sincere thanks to Michael Appleton.