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
> Kevin Molloy
> humorous, thoughtful, generally winsome and
> wine-fuelled acoustic
> Sherryn Nanvar
> melodic, mellow and sincere acoustic set
> LR Rockets
> Rock / New Wave / Indie
> 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.
> 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.


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:

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.