27th of February

Just getting over another infection, been in bed for a little bit and Internet has been down for a while which is annoying.  The new wheelchair is working well, going to have adjustments made tomorrow and will hopefully be able to fit the mini computer to it soon.  I’ve been working on employment opportunities and carers, decided to have a personal assistant during the days in hospital in order to make them more productive for me, and have a meeting with care agencies and social worker next week to proceed with funding care packages for long-term.  Also thinking of trying to move out to an interim housing location as the extension will take a long time and I would like to get out of hospital.  Had a great day today with dad and Polly, went to pizza express in Aylesbury.    2
dscn0331.JPG27 Feb 2008 Tom and Polly 127 February 2008 Tom and Polly 227 February 2008 Tom and Polly 327 February 2008 Tom and Polly 4
28 February 2008 Wheelchair adjustment at Oxford Centre for Enablement (head controlled tipping and 4 gear shift etc)
28 February 2008 Wheelchair adjustment at Oxford Centre for Enablement (head controlled tipping and 4 gear shift etc

steppingstones to more mobility

On Friday I was in Cardiff and watched two stunning performances directed by professionals but created by students of the Royal Welsh College of music and drama, a matinee of fireface and then West side story in the evening. Both of the set designers and costume designers are in Ellen’s class, Jennifer Lee and Oliver Townsend’s sets were incredible. Jenny creating a wonderful dirty steel scape straight from a downtown urban back alley in New York, using a wonderful bridge idea spanning the stage enabling stage dynamics not usually possible with such a heavy duty set. Olly’s set was more minimalist and of lower -budget, used a brilliant abstract technique implementing Perspex screens, clever lighting and a grid array of chairs to illustrate explosive emotional scenes.
Spend the rest of the weekend at my granddad’s house relaxing with my dad, mum, granddad and Ellen. Was trying to let E work, and played grandad at chess.
Monday I tried out the grandstand, a device which straps you in to a standing position and needed to be adjusted for my lanky frame and lack of upper back muscles. I also gave my lungs a workout. Today (Tuesday) I went to Oxford and was fitted with the new chair which is controlled by switches behind and the side of the head
This is painful training for the neck muscles, but well worth it in my opinion, as it reduces the need for large control devices in front of the face. Next step is to get a chair which lifts me into a standing position and of course environmental controls, attached telephone and computer etc.
Also progressed with potential funding for carers including weekend leave, have another meeting next week to clarify this. I am in the middle of applying for access to work to help assess needed adjustments and assistance if I was to work.
Over all very enjoyable times, glad to spend lots of time with Family and Ellen, with Much-Needed Quality Time with Dad.
Best Wishes to All


I went to see England versus Switzerland yesterday, which was a great experience, Wembley was very disabled friendly, apart from having to pay £25 for disabled parking.  It was extremely close to the venue and directly next to the VIP parking, but I disagree with having to pay over the odds parking when close proximity to the venue is a necessity. They were very friendly and there was ample lifts and good visibility seating.  England played a good game under their new manager, considering this was a newly moulded team, and came out victorious 2:1 winners.  There were close to 90,000 spectators, a very good turn out for a friendly, and the atmosphere was very warm apart from the occasional overtly negative comments.  The food was expensive, getting out of the car park took some time, but I thoroughly enjoyed my first new Wembley experience.  The extensive police presence was comforting, not least for the Switzerland fans I should think, and the staff were very friendly.

I have been going out to the pub, and visiting my grandad’s for weekends.  I have an assessment from a care agency next week, which should bring me closer to acquiring care funding.  I also have an assessment with the wheelchair service which should enable me to have a close-fitting powered wheelchair, as the present one is a bit oversized and uncomfortable.  I have had some long spine x-rays which have shown some room for improvement in terms of posture, which can now be addressed in physiotherapy.  I am starting to be able to manipulate my arm using my deltoids to turn pages (with difficulty) using a mobile arm support.  This is very fatiguing and slow, but very satisfying.  My discharge date has been postponed as the 13th of February was unrealistic to to my unstable health (dizzy spells, low blood pressure etc), this is encouraging as it will mean continued health care, physio and occupational therapy for a little while.  I will continue to try and spend as much time outside hospital at grandad’s and elsewhere as possible.  My neck continues to improve in stamina and strength, but I have acknowledged that this may take a while considering the extended time it has been inactive.

I am going to apply for access to work funding to enable me to try to commence work and continue to work on projects including the USB switch mouse, experimenting with different types of eye control for computer, in combination with speech recognition, environmental control possibilities (radio and infrared controlled) and minicomputers/phone devices.

For an interesting technology, search for i-bot on Google.

Oliver is safely grounded in Australia (Sydney), working honest hours.  Polly is having fun and studying at Sussex successfully, mum is helping me arrange things, helping with Michael’s affairs as well as working too much.  Dad is flying about as usual and visiting me this weekend, and Ellen is working too many hours at university producing magnificent sets for theatre productions (two similar productions I am going to see today).