Bitesize at the good ship in Kilburn

333333hello all, my good friend Erin has generously organised to fund raise for the Pavilion trust at one of her musical events. I would greatly appreciate it if people would try to attend, having been to one o these events previously, I would highly recommend them. The music will be of the highest standard as is the venue, and drinks are quite cheap. Not to mention that the crowd will surely be a very nice bunch, hopefully see you there. Details follow:

The event will be held at “the good ship” bar in Kilburn, London. Starting at 7 p.m.
> Earfood Live presents Bite Size a Fundraiser for The
> Pavillion Trust www.tomnabarro.com
> Kevin Molloy
> humorous, thoughtful, generally winsome and
> wine-fuelled acoustic
.> http://www.myspace.com/kevinmolloy
> Sherryn Nanvar
> melodic, mellow and sincere acoustic set
> http://www.myspace.com/shirrynanvar
> LR Rockets
> Rock / New Wave / Indie
> http://www.myspace.com/lrrockets
> Dirty Electric
> A collision of perspectives, cultures and most
> importantly four different unique energies brought
> together from all corners of the earth to form a dirty
> great union of music.
> http://www.myspace.com/dirtyelectric
> 7pm £4 on the door – Remember it’s a fundraiser!
> 2

58Erin's fundraiser

Tuesday outing

I have been joining mailing lists and exploring the vast number of accessible technology projects on the Internet, offering my limited help.  There is some great work going on in these areas, one great website is oatsoft, which has some very interesting open source software projects.

I’ve also been looking into the speech recognition Internet communities, there seems to be some great scope for doing almost anything on the computer using Advanced Scripting, which is a way of programming a computer to respond to certain commands issued in the speech recognition software.  The easy but expensive way for me to do this is to upgrade my speech recognition software from Dragon naturally speaking preferred to Dragon NaturallySpeaking professional.  This will cost around $500, whereas the hard way is to use something called natPython, and open source software that is free but requires me to learn Python programming language.

I sent an e-mail to someone at Roke Manor to ask about employment opportunities, they will hopefully get back to me tomorrow on that.

Today I went to Claydon House with Mum and my brother – it’s a really nice picturesque stately home lived in by the family of Verneys, some of whom are family friends.  It was a lovely trip, a welcome change from the environment of the hospital.

As you can see I am trying to keep busy. Ellen is back at university in Cardiff at the Royal Welsh school of music and drama, this is going to take some getting used to.  Thank you to those who write comments, it’s lovely reading them.

halfway

after six weeks of this collar on, I now have six weeks left to endure.  Still feeling much better within myself most days, I had an enjoyable meeting with the member of a company called Possum, who manufacture environmental control unit’s.  These units can be used to control any infrared device or radio controlled device, they can be controlled by a switch or alternatively by voice recognition software.  I was very intrigued and even learnt how to program one.  Today I met members of a company called meru, these guys are very interesting and seemed keen to keep in touch.  We talked about page turning devices and potential ways in which I could help them.  Today’s is a short post, more to come soon.

Lots of love, Tom

getting stable

3Direct e-mail for Tom is: whizz2000@hotmail.com

So, Laurafest was a great success and I’m very sore and I couldn’t attend, although I’ve been given a DVD of bits of the event by Laura which I have been enjoying watching. Rob Holden and co-raised an incredible amount of money and performed an amazing feat, I really couldn’t have imagined that scale of fundraising, a testament to all involved including the fundraising team, thank you. I have put the Widget below so that those who are unable to see the Sidebar can quickly see what has been raised. I am also going to post Rob’s report of the Ultratour and some other reports of the event (and interviews) in a new page on the blog shortly.

Since my operation I have been pumped full of antibiotics in order to stem the developments of the bone infections in my neck which caused the instability which resulted in a slip of the first plate and the need for the second operation. The pain in my neck has reduced a lot since the second operation, the infection that was mostly cleared in the operation is being reduced and my blood pressure is more stable and therefore I get dizzy and nauseous less of the time. This increase in stability allows me more time to focus on thoughts, reading, computers, guests or anything else.

last week my infection indicators went up slightly, which prompted the doctors to put me on more/different antibiotics to cover for any other bladder or chest infections, and this antibiotic caused me to lose my appetite for a few days. The other day after reviewing the infection indicators after a few days of this new antibiotic, doctors decided to stop all present antibiotics and to start on a new antibiotic. This new antibiotic is not new to the world, but it is very specific and will hopefully target the bone infection better. This stemmed from advice given by specialist microbiologists at Oxford. So today and yesterday I had been feeling much better and my appetite has come back.

I have been having visits from a psychologist, which had been nothing more than informal chat, and she believes for some strange reason that I am fairly sane. On a serious note, I am coping very well with a little help from my friends (to quote the Beatles, I have just watched “I am Sam “,which it is a brilliant film and anyone that has seen it will know the relevance) .

Yesterday I spent a lot of time with Ellen and my brother, and today I went to a pub lunch at the bell with the lovely Lauras, and then expecting a visit from Molly and family later tonight. As you can see, I’m not short of visitors and have been visited by many attractive women recently.Lucky me.

I’ve been thinking about ways to keep my mind occupied, as my life begins to regain some sort of daily structure. Much of my day is still involved in getting up, washing, eating, going to bed and other things that I need complete help with, but I’ve been able to spend more time on the computer which seems like the easiest way for me to be productive and to communicate with people. I’m on Skype occasionally if anyone is interested, my username is tom.nabarro.

I have set up a small network of computers in my room and I’m contemplating continuing work on my University project, I’ve also been asked to work with engineers in a company called Meru?? Who work on enabling people with disabilities by creating devices to perform simple tasks. This will be very interesting as I think one thing I have gained from the accident is the perspective of a disabled person (obviously). It is possibly the most useful thing to gain for an engineer working on devices for disabled people, be this controls for driving, wheelchairs, assistive technology, environmental controls, speech recognition or computer software. The reason for this is that engineers are not known for their communication skills, and the most important thing when designing for someone with specific needs is to be able to communicate effectively with them to confirm their requirements. I can help in this area, as I understand some aspects of the requirements of someone with a spinal injury, especially a tetraplegic, I may also find it easier to understand the requirements of another disabled person. These are areas that I might potentially be interested in working in the future as I think I have the potential to help a great deal of people.

I attended an employment clinic and talked to various people about returning to work and the feasibility of transport and accessibility. I would really like to be able to take up my contract with Roker Manor and work there, and I think there is a possibility of them honouring it at some stage in the future. This was a job I wanted badly, worked hard to get and it’s pretty much perfect for my skill set. I was encouraged to get in contact with them and discuss accessibility, this is one project for the future.

I am getting used to asking for help and not feeling guilty, which is a hard step. The times when I feel jealous of people doing things I would enjoy but can’t, and the times that I feel regret for what has happened are getting less and less. I am still hopefull of being able to move more muscles in my body in the future whilst accepting that for the moment the important thing is to focus on techniques to enable me to be more functional with my current physical ability.I feel lonely sometimes when alone, and feel sad that I’m not at home with my family, but the support I have allows me not to dwell on feelings of self pity. I feel that the most important tool that I use to avoid the settling of negative thoughts and feelings is the ability to focus on potential projects and plans for the future. I am lucky in that I have many interests in life, this enables me to really focus, as without genuine interest I can’t focus. This is one of the most important things I learnt at university.

I hope you are all well, and that you take care in Indonesia Dad.

Best wishes and love to all from Tom.

P. S. although Robs ultra-tour is over, donations are still possible through that site or this one, and obviously we will keep fundraising for the Pavilion trust itself directly. People can donate directly, and the Pavilion trust account details are as follows:

sort code, HSBC: 40 — 35 — 35

account number: 91392654

many thanks.

Laurafest this Monday

A long overdue post from me, Tom: sorry for the long delay. Some of my really good friends in London have decided to put on a fundraiser, Laura Street and Laura Silver have had a tradition of putting on a small festival in honour of themselves each year in the summer. This year they have kindly done so in order to raise money for the Pavilion trust, the festival will be held, unconventionally, in a pub. The pub in question is called ” the good ship” and is in Kilburn in London. Laurafest will be held this Monday, the third of September, and will be a night of live musical performances from brilliant acts such as the infamous Dr Joel,the windup merchants and Savage Messiah.

Laurafest is, as far as I’m aware, open to all. It will be a great night, good value for money and all for a good cause. I have tried my best to be in a position to attend but after battling with doctors and nurses, I have been told that due to still being on intravenous antibiotics and also due to my neck still being slightly fragile in the eyes of the consultants, it would not be safe for me to attend. I really am quite gutted about this, but I hope that all who attend have a great time. Dr Joel really is one of my favourite performers and also strangely has worked with my dad in the past (this is not how I know him).
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For more information and details of tickets etc click here…
With regards to my progress, I’ve been working hard to deal with my loss of neck mobility,much of the same feelings as encountered previously.

Checking in

Hello all, now just about back to being able to spend time on the computer with limited neck movement from my bed.  Just been catching up with all your comments and with Rob Holden’s progress in his training.

I am beginning to gather an appreciation of the extent of Rob’s challenge, through his entertaining accounts of training, face plants while eating on descent (I am familiar with face plants from being an avid skateboarder) and the temptations of a kebab (although mine usually come after a few beers), the distance of the ultra-tour and the route through the Alps is absolutely huge and the thought of someone running this in less than 40 hours is mind-boggling.  I would like to take this opportunity to thank Rob again for his enduring efforts and goodwill.

I’m amazed at the generosity of people and the efficiency of Tom Ernst and his fundraising team, I am so grateful to everyone for helping raise money for the Pavilion and Backup trusts, it will make a great difference in the standard of living of paralysed people such as myself. 

Please keep fundraising efforts going, every little helps. Rob Holden will be commencing his mad run on the 24th of August and his progress can be tracked from his website (link accessible on the right of this webpage). 

Some very creative and generous friends of mine will kindly be organising a couple of fund-raising musical events in Kilburn in London during the next few months for the Pavilion trust.  At the beginning of September, a musical extravaganza called LAURAFEST will occur to celebrate the existence of two wonderful Lauras, with ticket revenue going towards the Pavilion trust, more postings and contact details to follow.

In terms of my own progress since the operation, which was 11 hours in duration and caused some concern, I have been extremely lucky in that I didn’t end up with a tracheostomy.  The reason for the length of the operation was the extent of infection in my neck and the degradation of the spinal column around the area of the lesion. The surgeons performed the existing titanium plate removal, further bone graft from the hips, spinal column correction and fixing using nylon string from behind, and then the fixation of an extended length of the spinal column using a longer titanium plate. 

I had very congested lungs which took a few days of heavy physiotherapy to clear (they are still being cleared continuously), and the acute neck pain eased up after around four days, two of which were spent numbed by morphine.  After seven days I was able to get up in the manual wheelchair and get a special collar fitted, which I’m told will become comfortable during the time I am required to wear it (up to three months), and have been moved downstairs back to St David’s ward in the same room as I previously occupied.  The past week on bed rest has been extremely boring, and has left me thinking of the disadvantages of my situation far too much.  Therefore now I will be making the most of my ability to use a computer and to rearrange my room into a more favourable environment for self-education and entertainment.

Prior to my operation I enjoyed a birthday celebration at my grandfather’s house with many friends from London, this was a great day out and it was great to see all who were there, some of whom I hadn’t seen in a while.  Thanks to all who came and organised and for the great cards and presents.

Thank you to all who have visited since the operation, I have been fed like a king which has enabled me to regain my appetite, which would have taken longer with just hospital food.  I would like to especially thank my mum and Ellen for their help and support day in and day out.

I have been enjoying conversations about how to endure feelings of restlessness physical and mental, and how to strike a working balance between a withdrawn and relaxing lifestyle and a modern urban lifestyle, plus the potential flexibility in the mode in which we use of our minds.  Thank you Peter and Maria.

Ellen is in Edinburgh at the Festival, and hopefully enjoying herself with friends.  I am  looking forward to seeing Ollie, Polly, the ferrets, dad and gill soon.

Love to all, T Continue reading “Checking in”

Laura’s visit

>I have been to visit Tom at Stoke Mandeville several times, usually with Raj, however yesterday we also took Kam Sohi and Kirstin Maguire (friends from Brunel) who had not seen Tom since his accident. Everytime I see Tom he has made improvements, and I continue to be amazed by his progress, yesterday was no exception.  When we arrived, around lunchtime, Tom was not yet out of bed (provoking many jokes about laziness!) but he soon encouraged the nurses to get him up and in to his wheelchair. Due to a recent complication, Tom is now back wearing his neck brace which he was whinging about as it isn’t very comfortable, it was also very humid on Sunday so he complained it was too hot.
>When Tom was in his wheelchair, he fainted which was slightly terrifying! The nurses were wonderful at bringing him quickly back round and checking it wouldn’t happen again. Raj explains this better than me,
>“Tom’s fainting was like when you or I stand up too quickly and we get a head rush, except where our heart increases blood pressure and we feel light headed (the blood goes to our head and we get extra oxygen in the brain) Tom’s body doesn’t give him that head rush. In fact he doesn’t get any rush, and without the rush (the blood pressure had dropped) he fainted (with his eyes open which was scary). The nurses tipped him back and lifted his legs to get the blood out of his legs and into his head, like what our body does for us during a head rush”
>
>After the nurses brought him round, he felt slightly hazy but soon explained that that often happens. I told him that he scared us and he cheekily replied, “Have to do that again then”.  (This is quite normal morning behaviour for Tom and is nothing to be concerned about.)

>
>We went outside in a brief sunny period and talked about Raj’s system of rating people (ha!), and Kirstin’s extreme reaction to geeks before trying to track down some lunch. One of the wonderful things about going to Stoke Mandeville hospital is witnessing lots of people in a similar situation to Tom just getting on with their lives and, for the want of a better word, acting ‘normally’. Tom has met and become friendly with many people around the hospital including a young guy we bumped in to who said the underused phrase of “Top banana”.
>
>We eventually settled for lunch in Jimmys cafe and watched a large part of the Eastenders omnibus (almost sending us all in to a deep snooze) whilst eating far too many sweets, crisps and ice-cream. An enormous thunder storm kicked off and we watched it from the safety of the dry hospital! Els came back to the hospital and joined us for an unnecessarily lengthy conversation about Twister ice-lollies (don’t ask).  We discussed plans for upcoming Laurafest ( <http://www.myspace.com/laurafest> www.myspace.com/laurafest) and Els and Tom told us all about ‘777’, which sounds like a lot of fun. We all pikeyed grapes, Bombay mix and apple juice off Tom. Raj force fed Tom grapes for a bit which he didn’t seem to enjoy, whilst Kam and Kirstin contemplated befriending a fellow ‘Essex’ on the ward.
>
>It was lovely to spend so much of the day with both Tom and Ellen, hopefully our ridiculous conversations helped take Tom’s mind off his discomfort if only temporarily.

Laura Street

A new beginning

Unfortunately, this is Tom writing after an absence of a few weeks and some great experiences, with some bad as well as good news.

Since my last post, where I was pleased about being able to communicate on a computer, I had some good times where I was stable and could think for extended periods of time without worrying about my health, and therefore was able to plan and think of the future creatively.  This was a welcome sense of normality, enabling me to prioritise and get back in touch with people, and plan my days in chunks of hours days and weeks rather than seconds minutes and hours.  I took some time to learn about subjects related to my injury through patient lectures including issues such as pain management and the spinal cord, although my biology and physiology knowledge is very basic.

I have enjoyed so many good visits from so many great people, all unbelievably understanding, generous and caring.  Friends from Switzerland, including the Leisingers (possibly the most amenable and welcoming people I have ever met, thank you Maria for the music by Denner?, I really love the first few tracks they have been playing every morning for the past week), Thomas Ernst, Sean visited from Malta and gave me a beautiful present which means a lot as well as attending the festival with me, my brother, my father, ellen, colin, Mr Lalani, dan, cousin Nat, tom, Fred, Philippe, Max and Sherin. I saw Josephine and Lucas with my dad and Gillian, which was amazing, as I hadn’t seen them for a while.  They made me smile lots and asked some surprisingly astute questions, I wish them lots of love, hope to see you again soon guys.

I think that it is hard for my very close friends, with whom I have spent a lot of time with prior to my accident, and know me very well, to maintain the same relationship with me.  I’m very grateful to all of them for trying to do this, it has meant a great deal to me and makes things seem more normal, which is a great help when everything else is upside down.  I would like to thank all my Oxford mates (incl. Fred, Tom and Anthony), university and London friends especially Raj and Laura for coming and taking the Mickey occasionally, and my brother, sister,ellen, and parents for all the support.

The festival was a big highlight, it gave me confidence to see people being so friendly and having such a good time.  There is also an aspect of it which brought some things home including the fact that I was unable to dance too much, but this is just a small obstacle to overcome.  Another beneficial factor of the festival was its ability to allow me some small endorphin releases of which I crave and cannot get due to my inability to exercise, these were achieved by headbanging to repetitive clever engulfing music by some of my favourite produces and DJs.

I visited the Oxford wheelchair service in Headington, Oxford, where I was enlightened in terms of knowledge of assistive technology to aid my mobility.  I learnt about fully automated cars, with automatic locking, opening, ramps, wheelchair stabilisation and steering possible through chin control or head control.  I also learnt about different types of wheelchair, I was particularly concerned about their ability to perform off road, including caterpillar track wheelchairs and Rolls-Royce equivalent type wheelchairs.  We discussed environmental controls, including the control of lights TVs and radios to mention a few devices, and I was comparing the potential reliability of computer system based environmental controls (of which I saw when working at Intel) and dedicated environmental controls (seen there).  I imagined the potential of a computer system based on Intel environmental control being installed within the Pavilion.

Now I’m afraid it’s the bad news, for the past few weeks I’ve been experiencing severe back and neck pain, I assumed this was mainly to do with muscles relearning and effective physio but after a while I was able to discern different types of pain within my neck and realised that the pattern of pain differed for different types.  While primitive painkillers were just about doing the job, I pushed for further scans to make sure there was nothing going amiss, and between the sixth and the eleventh of July, the titanium plate in my neck became loose due to an unwound screw, as shown by the CT scan yesterday.

The doctor that I trust explained the need for an operation as the situation was unstable this operation involves replacing the titanium plate and correcting the spine alignment.  Unfortunately this means a six-hour operation, potential artificial respiration and a trip back to ITU (intensive care), as well as more drugs and concern for those close by.  As I’ve done this before, we hope that the trip back to rehab will be faster this time.
The operation will hopefully be scheduled for some time next week.

Some of you smart readers will have noticed that the plate slipped around the time of the festival, I would just like to say that I don’t regret this at all as it was bound to happen and I see this as simply an accelerated test. 

As for now, I have to wear a brace which is proving a right pain, but can attend my graduation on Wednesday.  Anyway I have to go, I’m getting a prize 🙂

I hope some of you might be still reading this, thanks to everyone who visits, writes posts, telephones or just reads these messages and sends their best over the ether.  Thank you for your support and keep your fingers crossed for round number two.

I hope everyone is well and enjoying their summer
all my love
tom and Ellen (is absent and eating dinner).

Independence via Electronics

This is Tom, dictating this post using voice recognition software called Dragon and Navigating the mouse using an infrared pointing device called SmartNAV. I’m on my own at the moment as Ellen is attending her second year college ball. As I am now able to independently communicate via e-mail I’ll be trying to answer more as I’m aware that many e-mails have gone unanswered. Also I will try to write more posts although the progress with my health is not as exciting as it was, the steps are slower and sometimes more painful as they mostly involve physiotherapy. I am working on achieving a speedy process of rehab and have been targeting October for release although am aware that the accommodation may not be ready by this time. I am hoping to start hydrotherapy fairly soon which will be a great experience as I love swimming so much, it is also a great relief to be able to use the gym as it becomes a more sociable experience than physio in my room. I just hope I can keep this big side room for a little longer as I don’t know where I would keep all my junk around a normal ward bed.
Dad is coming to visit soon and I thought I’d take time to post some information that Rob Holden has written to explain why he is going to perform such a crazy feat for the Pavilion and Backup causes.
There will be a new website put up for the purpose of Rob Holden’s fundraising adventure, I will be adding a link as soon as it is up. This will be a method of keeping track of Rob’s progress in the mountains. I would like to thank Rob, his support team, Tom Ernst, Siobhan and Bob, Linda and all other members of the Switzerland fundraisers for all the effort that they have and will spend in their endeavours. I would also like to thank mum, dad, Grandad and all others who are helping to arrange accommodation and the potential of a Pavilion.

Now to hear from Rob:

‘when you are going through hell, keep going’ (Winston Churchill)

Rob Holden (Why?)

The news of Tom’s accident made me realize how anybody’s life can change so completely – and with so little warning. One minute you can be on the top of the world. Things are moving along nicely. And then you look away for a second or you make a decision that puts a series of events into motion, and everything changes.

I have met Tom twice. He was passionate about sport and taking on challenges and relished adventures. And in that sense, I believe we are similar – we enjoy pushing the boundaries and the sense of achievement that comes from enduring mental and physical test. I greatly value Toms appreciation of what the race entails. Though I cannot, nor will I pretend to be able to fathom the challenges that Tom now has before him. However, part of the attraction of this race for me will be to test myself physically and mentally – a process I imagine Tom goes through hourly and daily.

In closing, a word on teamwork – the value of which anyone who has ever undertaken any high risk sport, never underestimates. While I will run the mountains alone, I know that I have a team of people with me who have supported me along the way. They have dedicated their time, their care and their expertise – all of which have helped to build mental and physical stamina. I am sure if Tom could be, he would be alongside shouting at me to get a move on every step of the way. If together we can raise awareness and funding for the pavilion and the Back Up trust through this small endeavour and in so doing, make a difference in Tom’s and other people’s lives, then I believe it will be a race well-run.

Assimilation

We have been working on plans for fund raising with the Pavilion Trust Fund (see previous but one post), for the creation of a communal space to be ready by the time of my release.  Rob Holden is planning to help with fundraising jointly for the PTF and the Back-Up Trust – which organises trips for people with spinal injuries and therefore greatly improves the standard of living for many - Rob is planning an ultra-marathon across the Alps, more details to follow.  Tom Ernst and collaborators in Switzerland are organising this fundraising effort, they deserve a special thanks.

Thankyou for all the generous messages about my degree, I am most grateful to my lecturers and the school of electronic and computer engineering at Brunel for having confidence in me.  In response to Tim, I haven’t received the official percentage but believe it to be above 80 :), thanks for the offer of carpet laying, we will be sure to take you up on the offer.

 The supply of audio books has been amazing, although I haven’t been listening to them at the same rate as they are being received.  Many thanks. 

After my third negative set of swabs I have now been cleared of MRAB and MRSA which means I can use the gym as a normal spinal patient.  My first experience of the gym occured today and I had my shoulder muscles electrically stimulated via electrodes.  Using the gym enables me to perform a wider variety of exercises at more flexible times.

With regard to life in the rehab ward, the nice nurses are keeping me amused with their dodgy and enlightening conversations in the morning. 

Thanks for the comments as always its such a pleasure to hear from friends.  It enables me to be confident in what I am trying to achieve.