Before I go any further just a couple of points. Firstly, I will also post this on various facebook pages, seperate from my blog, as I feel that its important that as many people as possible read this. So if you see this twice, its not because I'm attention seeking, its just that I'd like as many people as possible to see this and hopefully share, in what was a wonderful event for me, but also hopefully take some hope and inspiration from it.
Secondly, you've probably seen the title of this blog and are wondering why you haven't seen "Part 1". Well quite simply, I haven't written it yet but I'll explain this during the blog.
On Tuesday last week I had two appointments at the National Hospital for Neurology and Neurosurgery (NHNN), in Queens Square, London. For those of you who haven't been there, on the video below there are brief clips at the beginning and end which show the outside of the hospital and Queens Square.
My morning appointment was with Occupational Therapy, and I will write about this seperately, as "Part 1". See, there is method to my madness.
In the afternoon I had an appointment with Becca in the Physiotherapy Department.
This appointment had been offered during a previous appointment at the IBM Natural History Research Study Clinic in December 2012, when I meet Dr Pedro Machado and Liz Dewar. Liz, one of the senior Physio's, offered to see if there was any useful input that the Physio team at NHNN could offer. I jumped at the chance to see what help they could provide.
I had my first appointment with the Physio team at NHNN, back in March, where they did an inital assessment and then gave me some simple exercises to do at home, to help strengthen my lower back and core muscles. These were exercises I could mainly do in my wheelchair.
After spending time with Becca going over the exercises and reviewing how I had got on with them, we were joined by Liz. Having transferred out of my wheelchair onto the plinth, they then got me strapped into a standing frame.
At this point, it might be useful to give you some background. On 17th March 2008, I went into hospital for 3 days of treatment with Methylprednisolone, which I had every 6 weeks. Usually I would drive to the hospital, walk up to the ward, stay in for 3 days, and then walk back to my car and drive home. I had been doing this for about 2 years.
My walking at this stage was really bad. Mainly out of bloody mindedness, but with a fair amount of stupidity, I refused to use any walking aids other than a stick. I absolutely refused to consider a wheelchair, or even a frame. My walking was slow, unsteady, and exhausting, with falls a regular occurance.
Anyway, I had my treatment and on the 19th March 2008 at about 4.30pm, I left the ward and walked to the lifts. As I was waiting for the lift to arrive, I felt as if I was going to collapse, so quickly - well not that quickly - returned to the ward and collapsed on the bed. That was the last time I stood or walked on my own.
Despite 3 months in hospital, having regular physio, and then 2 months in rehab, having intensive physio and gym sessions, I finally returned home in September 2008, in a wheelchair, unable to stand or walk.
Over the next few months I was seen by the physio team at my local hospital, and by the community physios, where they would use a standing frame to help me get upright, but eventually in May 2009, I was told that, as there was no long-term hope of me improving and being able to stand and walk, that they couldn't see me any more.
Despite what I was being told, I always thought that I could stand using a standing frame but that to do so needed a long term, co-ordinated approach. I argued that standing would have a benefit to me physically, but also psychologically, and that in terms of my long-term health and care needs, if I could stand now, it would save costs arrising from additional needs due to my lack of mobility if I was left in a wheelchair full-time. These arguements fell on deaf ears.
This is why the opportunity to see the team at NHNN was so great. Because they actually thought I might be able to stand and could see the benefits to me of being able to do so.
So having got me strapped in, got my feet and knees in the right positions, Becca turned the machine on and I proceeded to stand up!!!!!!!!!!!!
It wasn't a very elegant stand, and once up, I needed a lot of help in getting my chest and shoulders up, but I was standing on my own two feet, with my legs straight and with weight going through my legs. The video below shows this stand and a shorter one afterwards, but unfortunately due to a lack of space, only gives a picture of what was happening with my upper legs, and lower truck, but hopefully you'll get an impression of what was going on.
It felt fantastic. It was hard work, but the feeling of being able to stand was amazing.
I owe a big thank you to the staff at NHNN for seeing the potential, and giving me the opportunity to go there and to stand. Having not stood independantly for over 5 years and with a machine for nearly 4 years, I wasn't sure I'd be able to get onto my feet so well first time, but I did.
And to all the negative people, who told me I couldn't do it, that I wouldn't be safe, that I wasn't worth spending the time and effort on - well frankly you can f**k off (excuse my language). I knew I could do it. I just needed someone to believe in me and to give me the opportunity.
I was completely knackered after the session but am already looking forward to going back in 4 weeks to try again. I'll keep doing the exercises, and I'll keep believing, and next time I'll stand even better and longer.
Not a bad a Tuesday out, after all.
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