Merry Christmas

Lots of things to be updated, contract has been extended at work for six months which is a relief.  May start to be doing three days a week with one-day working from home.  Home Office network is going well with the pavilion being completed, my fileserver printer and scanner, projector and sound system are all installed in the pavilion.  Focusing on the control of all computers remotely using voice recognition software.  New wheelchair has been ordered, C400 from permobil, access to work government funding has paid for the majority which is amazing, below is an extract from my funding application:

It was suggested to me that a wheelchair with the standing functionality would be great beneficial to my work life.  I am unable to project my voice very well due to my level of injury, therefore giving presentations or talks is very difficult not only because I am sitting and therefore lower than if I was standing and more difficult to see from the audience’s perspective, but also because I find it difficult to reach the audience with my voice.  In a standing position it is easier to project my voice further.  Another reason for acquiring a standing wheelchair is that standing is a critical part of my medical maintenance helping the circulation, blood pressure, reducing spasms (I try to stay off the medication because it limits my mental capacity for work), maintaining range/avoiding contractures, pressure release/avoidance of skin problems.  Due to the length of my commute and working hours, the only way I could stand would be to use a standing wheelchair at work while working (I have an adjustable height desk at work which would make this suitable). At the moment I am unable to stand on these days and it is making work very difficult in terms of increased spasm and need regular pressure release/stretching, without which I would be much more independent and capable while working.  Adjusting my vertical height can also help with logistical as well as conversational factors, an example of which is purchasing/enquiring from a kiosk.

 

Aside from the issue of standing, this new wheelchair would be beneficial in terms of stability, my current powered wheelchair fails to support my thorax sufficiently in the car making working whilst commuting difficult if not impossible (as well as being painful/uncomfortable).  The lack of suspension means that any slight bump causes me to rock in the chair and this affects my steering (head controlled), which is not an issue on smooth indoor services but travelling across site at work requires going outside and across slightly uneven terrain which is at present very difficult.  Another problem with the head control on my current wheelchair is that one of the reporting mechanisms is a loud set of the beeps, this interrupts conversation and meetings, the proposed wheelchair has a new head control system which is acoustically much more suitable.”

 

I have been continuing to try to get funding for a double bed with profiling capability, below is an extract from this application:

I’m writing to appeal for assistance with funding for a double profiling bed.  My name is Tom Nabarro and I sustained a C4 complete spinal injury and was in a critical condition for many months unable to breathe without a ventilator.  The accident occurred while snowboarding in Bulgaria in April 2007, I am 24 now and live in a purpose-built extension to my grandfather’s house near Witney, Oxfordshire.  I live with my girlfriend Ellen who I have been with for 4 1/2 years, and without her I doubt I would still be living.  She has given me precious physical, emotional and psychological support and suffered as much as I have throughout the last year and half, halting her studies and devoting herself to me throughout my rehabilitation.                         

Due to my condition I require a pressure relieving mattress and a full profiling bed to enable my 24-hour live-in care and support carers to move and handle me, the bed kindly supplied to me from the district nurses and the West Oxfordshire primary care trust is a single.  Having a single bed puts a strain on our relationship, being unable to sleep comfortably with my girlfriend and being squashed together on a single bed gives us both back and shoulder pain and she is occasionally forced to sleep on the couch due to pain and discomfort.  I’m often in severe discomfort or pain or suffering from autonomous dysreflexia due to being cramped in a single bed and have to wake my girlfriend to move me in the night, as you can imagine this is not healthy for a relationship I cannot afford to lose.

We have been unable to afford the cost of a double profiling bed ourselves (only half of the bed would be required to be profiling) and have therefore asked for assistance with the funding.

I have provided supporting documents from my GP, hospital consultants, hospital psychologist and the district nurses have been fully supportive of my request.  I provide some newspaper articles of my situation as I have been asked to provide further information, I’m not sure what other information can be provided but would be very cooperative if asked.

 

I hope everyone has had a very merry Christmas and best wishes for the New Year.  I really enjoyed catching up with a lot of old friends on Christmas Eve back in Oxford.  Am looking forward to becoming more efficient at work in the New Year and producing some decent work.  I will leave you with a nice lyric I heard the other day: “we met through a shared view, she loved me and I did too” by Mike Skinner.

pavilion is pretty much finished:

pav

Even if this is an old photo.  I will put up more recent photos as well as a decent post soon.

Life is very hectic, or it seems so.  Trying to spend every spare minute working to give myself a fighting chance of extending my contract early in January.Ellen has been around a lot which has been lovely and is off to Tenerife this Thursday for a week with her mum and sister.  Her dad visited yesterday and is settling down up in Scotland.

Christmas plans involve lots of relatives visiting Standlake, sometime here with dad’s family and some of Ellen’s

Technology and care continues to be complicated, but that seems to be inevitable.

Thank you so much to everyone who has supported me in any way, thank you for the huge amount of money raised for the pavilion, I can’t wait to start working in there I think it will make my time so much more efficient and will open up lots of possibilities for the future.  We are still struggling to meet the bill for the work so any more contributions are more than welcome.

I am now trying hard to obtain charitable funding for a standing powered wheelchair (permobil C500 or 400) which will help in all aspects of life in being able to change my vertical position, specifically at work.  It also entails huge medical benefits in terms of circulation, stretching, reducing the risk of contractures and pressure release.

That’s it from me for the moment, apologies for being so brief and sporadic with the posts.  Best wishes to everyone for the winter season, I think it’s a bit too earlyto be wishing people joyeux noel and all that.

Salutations. Tom

_____________________

“No one can make you feel inferior without your consent”

” depth is found in the valleys where we seek her, not on the mountain tops where she is found”