Merry Christmas

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Another large gap between posts for which I apologise. Since the last post which was when the large collar was removed and replaced with a smaller one, I have ventured out more (albeit mainly to the pub) to go christmas shopping and went to my grandfather’s house to try to organise a potential Christmas stay. We have had two successful weekend leave visits to Ellen’s dad’s house and will continue with them over and after Christmas. I am making use of the Bell pub as a local resource, enjoying relaxing on the weekend. John Stewart ( has kindly asked his clients to donate to the pavilion trust instead of giving their yearly Christmas bottle of whisky. These and other generous actions are continuing to improve funds for the pavilion.

I have been keeping myself busy with a USB mouse project to enable people with mobility issues to use a mouse. This is going well and I’ve learnt a lot about USB development. Simon, the human resources manager from Roke Manor research, the company I had a contract with previously, has contacted me and we talked about the potential of me working there in the future. The next step is to do a corporate health assessment to gauge what adaptations are necessary for the workspace. This should happen in January.

My neck is getting stronger, and the range of neck movement is slowly increasing, I am waiting for the collar to come off in mid-January and for my assessment with the head controlled powered wheelchair, then I’ll looking into a small mounted computer and environmental controls.

Unfortunately this week I will probably lose my large room and have to downsize, meaning taking a lot of equipment back to my grandfather’s. After Christmas I will be moved to Joseph ward, outpatients, for six weeks.

I have been allocated funds for a carer over Christmas from the local authority, but unfortunately I have no carer to hire as there are all booked up for Christmas. This would help take pressure off my family a bit.

2Best wishes to all over the Christmas period.  Tom

Visiting Tom December 13th 2007

Tom in the Centre December 12th 2007 (2)Getting in to the Centre Van to return to Aylesbury December 12th 2007With David Kemp at the Limes Standlake December 12th 2007Discussing Christmas Arrangements in Standlake December 12th 2007Tom and Becky (Occupational Therapist from the Centre) 12 December 2007Tom and Michael At the Limes Standlake December 12th 2007

****Thank you Charles Scott for the generous contribution of more than US$ 3000 for the Pavilion Trust****

Oliver and David met up with Tom at the Limes in Standlake on Thursday (December 12th) morning. Tom had been driven there from Stoke Mandeville by Becky (occupational therapist) and Sophie (Student Nurse). They were looking at the options for Tom being in The Limes over Christmas. Chris the builder was there and the community occupational therapist turned up shortly afterwards. We looked at the feasibility of moving Tom, in his wheelchair, from room to room inside the house. Tom and the therapists, together with Susie and her father, Michael, looked at what would be possible – in terms of what could happen where and it all looks very promising. We had lunch together (see pictures). David Kemp, Chartered Surveyor who is working on the execution of the extention to the Limes and the construction of the Pavilion came to the Limes and spoke with Tom and Susie about options, timetable and arrangements for the construction work. It will take some months for the work to be completed but when it is Tom will have a great space for accomodation, working and social activities. Tom, Becky and Sophie returned to Stoke Mandeville: David took Ollie back to Oxford and then went on to Stoke: he then had a great 90 minutes with Tom before leaving for Heathrow and USA in time to take part in a seminar in Washington Friday morning.

on to a smaller collar

3some good news today, after another CT scan, there has been seen to be some good bone growth. Although there are still some large air pockets, the bone has been able to grow in the spaces around the metalwork, and therefore the huge collar has come off to be replaced by a small temporary’ Philadelphia’ collar. My IV antibiotics will stop, to be replaced by oral antibiotics to target aerobic bacteria within the neck. Hopefully within two weeks, I will be off the collar and using my powered wheelchair. I’m looking into a mounted ‘ ultra-mobile PC’ (umpc) or powerful pda to fit on my wheelchair and interact with my other computers, and control environmental controls etc… If anyone is interested, as I think this is where computers are really progressing at the moment, some examples are:

lots of love to all, thank you for all the wonderful comments and e-mails, very heartwarming and encouraging. A big thank you to both the Lauras for a wonderful evening on Wednesday, the rock night in Kilburn was awesome, I really enjoyed listening to Savage Messiah, a very talented group of musicians.