Saturday 25 May 2013

Dream, Believe, Achieve.

Dream, Believe, Achieve.

These three words are the tag line from a 2005 film called "Murderball".  Not some horrific slasher movie, as the name might suggest, but a documentary about how some severely disabled guys overcome their limitations to take part in Paralympic sport.  Below is the write up on the movie taken verbatum from Amazon:

"More than merely a sports documentary or an inspirational profile of triumph over adversity, Murderball offers a refreshing and progressive attitude toward disability while telling unforgettable stories about uniquely admirable people. It's ostensibly a film about quadriplegic rugby (or "Murderball", as it was formerly known), in which players with at least some loss of physical function in all four limbs navigate modified wheelchairs in a hardcore, full-contact sport that takes them all the way to the Paralympic Games in Athens, Greece, in 2004. But as we get to know paralyzed or amputee players on Team USA like Andy Cohn, Scott Hogsett, Bob Lujano and charismatic team spokesman Mark Zupan, we come to understand that quad rugby is a saving grace for these determined competitors, who battle Team Canada coach (and former Team USA superstar) Joe Soares en route to the climactic contest in Athens. Simply put, Murderball is the best film to date about living with a severe disability, but codirectors Henry Alex Rubin and Dana Adam Shapiro avoid the sappy, inspirational sentiment that hampers nearly all mainstream films involving disability. By the time this blazing 85-minute film reaches its emotional conclusion, the issue of disability is almost irrelevant; these guys are as normal as anyone, and their life stories led to Murderball becoming the most critically acclaimed documentary of 2005. --Jeff Shannon, Amazon.com "

I purchased the DVD of this movie during last summers Paralympics, here in London.  I haven't got round to watching it yet, but I'm assured its a great film, and am really looking forward to it.  I'll let you know if it's worth seeing.

But it's those three words that really strike me everytime I look at the box, and its those words that give me the drive and hope in some of the things I do.
 
One of my early blogs, "A Truly Sensational Tuesday (Part 2)" - told of my visit to the National Hospital for Neurology and Neurosurgery (NHNN), and of my first attempt to stand, in a standing frame, for almost 4 years.
 
When I came out of hospital on 2nd September 2008, I was in a wheelchair and having had 2 months of intensive physio input, and gym sessions, whilst in the Wolfson Rehabilitation Centre in Wimbledon, I had reached a point where they could no longer keep me without me blocking any new patients that might need treatment.  I understood this and agreed that any progress I might make was going to be longer term, so was passed over to the Physiotherapy department at my local hospital.
 
I saw the physio's for 6 weekly sessions and made a small amount of progress.  Normally after 6 sessions they would stop seeing a patient, but pass them to the community physio team, but as I was making some progress they agreed to another 6 sessions.  After these extra sessions came to an end they advised that they could no longer see me but they would pass me to the community physio team.
 
I was seen by the community physio team at home, and the conclusion of the lady who assessed me was that they could not help me, and if they tried, I would end up being a negative result on their statistics.  Those weren't her exact words but that was the gist of what she was saying.
 
I argued and insisted on seeing someone more senior, and was eventually seen by one of the doctors, attached to the community physio's.  His assessment, after no of physical examination, was that I would not be able to stand or walk, and therefore they could not use resource on me, that could be better used on other people, with a better long-term outlook.
 
It was now about March 2009 and I was banging my head against a brick wall. 
 
I then turned to social services to see if they would supply a standing frame for me to use at home.  At first the signs were hopeful.  They seemed to be making all the right noises, and looking at various options.  Then I suspect that they started to realised the cost involved, and became less keen on the idea.
 
Eventually in May 2010, Social Services set up a meeting at the Physiotherapy department in the local hospital.  I was put into a standing frame, and expected to stand.  This was make or break.
 
I had had no physio input for over a year, and had just been sat in my wheelchair.  Not surprisingly I couldn't stand.
 
This gave Social Services the excuse then to say I couldn't stand, and therefore they could not afford to spend money in supplying a standing frame that I could not use.  They also indicated that if I had a standing frame at home I would be a health and safety risk.
 
I argued that it wasn't a fair test.  That I needed to build up to standing.  That if I had 6 sessions of physio input, I'd be able to stand. 
 
No one listened.  I was written off as never being able to stand.  Confined to a wheelchair for life!
 
But I always kept the dream alive, that I could and would stand at some point.  I dreamed, sometimes literally having dreams about being able to stand, that it was possible.
 
I also believed in myself.  Believed that I could do it.  I just needed the opportunity and for someone else to believe that it was possible.
 
So when I meet up with Liz Dewar, at the Neuromuscular Centre, in Queens Square in December 2012, and she offered to help provide some physio input and the use of a standing frame, I hoped that finally I might have meet someone who would share my dream, and believed I could stand.
 
In March 2013, I had an inital assessment and was given some exercises to take home and do, to build up some strength in my lower back and in the core muscles, to help with any future standing.
 
In my previous blog, I talked about the first attempt, and stand in almost 4 years.  This also included a video of my standing.
 
On Friday, I went again to NHNN. 
 
I was picked up at about 8.00 am (3 dregrees in May) and driven round the outskirts of Croydon, up through Thornton Heath, Streatham and Brixton, and then along the South Bank of the Thames, passed Lambeth Palace and St Thomas's Hospital, and then across the river at Waterloo bridge.  I always think this view down the Thames is one of the best, in either direction, but yesterday was a horrible wet day, so sadly the view wasn't at its best.  At the end of Waterloo Bridge we went into the Strand Tunnel, which cuts out going round Aldwych, and brings you out part way up Kingsway.  From there its only a short ride to Queens Square.
 
We arrived at NHNN at about 9.30 am, and after a quick dash out of the rain, and then another quick dash to the toilet, I reported to reception, ready for my 10.00 am appointment.
 
We used a different therapy gym on the 2nd floor of the hospital, where the standing frame was being kept.  I was helped by Becca, Liz and Kevin, all of whom can be seen in the video below.  During the session I managed 2 stands of approximately 4 minutes each.  This compares with 2 stands previously of about 4 and 1 minute.  Both stands felt easier and better than before.
 
The video below, shows both stands in their entirety.  You can see the help I needed in straightening my chest and shoulders, provided by Becca, and the help provided by Liz in ensuring my legs remained in a good position, with my kness and hips getting straight.  Liz also did the camera-work, moving this to show my feet and head, which would otherwise have been cut-off - probably no bad thing with my head.  Kevin kept control of the standing frame, ensuring that I was raised up and down, gracefully.
 
The room as very busy, so space was limited to video, and also there is a lot of background noise.  I have increased the volume on the sound so you can hear some of what we are saying - and I'll apologise now if there's any bad language.  I've had a problem attaching the video as I normally do, but the link below will take you to the video.
 
 

It was a huge success, again, and I'm amazed at the improvement over the last visit.
 
I have been given some details of standing frames, and also of Stand Up Wheelchairs, to consider for home use, and also details of some possible help with funding these.  So there is quite a bit to think about and look into.  If any of you have used a Stand Up Wheelchair, I'd appreciate your feedback and experience on these, and what models you might have used.
 
In the afternnon, I had a session with Claire from the Occupational Therapy team.  I have seen Claire on a couple of occasions before and she has provided me with splints for my hands - which I will blog about sometime - and also the Fatigue Management document, which I have put onto Facebook.
 
We discussed where we are with things and agreed that unless anything changes or if I need anything else, that we don't need to meet anymore.  My file will be left open for about 3 months and then closed off.
 
Claire has been very nice, really easy to talk to and has provded me with some things that have been veryful.  She has asked for my blog details so she can see what I am writing about - so I have to be especially nice about her.
 
I got home about 3.30 pm, after an ambulance journey the opposite way round to that described above.
 
It was a very good day.  I feel I've made good progress with my standing, and need to keep up the exercises, and look forward to my next appointment in 4 weeks.  I slept especially well Friday night.
 
So going back to my original theme.
 
I had the dream of standing, and despite what I was being told by just about every professional, I believed it would happen.  Meeting Liz in December, she believed in me and in my ability to be be able to do it.  Thanks to Liz, Becca and Kevin, I've started to achieve that dream of standing.  They have given me the opportunity I needed, and that's all I ever wanted to be able to make it happen.
 
Dream, Believe,, Achieve.
 
Three simple words, but they can take you a hell of a long way.
 

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