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33I am 33sat in bed at the hospital on Friday night… not feeling too great today, had a very busy week including looking at a house near Witney on Monday2 which needs a lot of refurbishment, furniture and white box appliances, but is suitable in terms of access and a wet room. The plan is to move in around end of June, for as long as it takes for the extension to the Standlake house to be completed. it will be a challenge to get carpeting, stove, couch, beds, washing machine all installed as well as arranging care by this time, at least I have a target to work to. The Oxfordshire Housing authority have worked really hard to get me this temporary accommodation so I’m very grateful to them, and the West Oxfordshire primary care trust have been helping me in trying to arrange a complex care package which will hopefully be decided on soon. We are trying our best to arrange a suitable care package without having to spend resources creating a separate care agency to employ carers on my behalf, if we cannot find an acceptable arrangement using existing care agencies then this will be an option.

Tuesday I visited the Oxford Centre for enablement to get my wheelchair backrest adjusted for better posture, leg rest actuators so that I can lift and recline my legs using the control system on my wheelchair. Peter, the engineer who enables me at the wheelchair service was extremely helpful and patient as usual, and I have a lot to thank this man for my mobility as well as Stephen Hawking for the use of his vehicle without which I would be extreme stuck.

Wednesday and Thursday I was in Cardiff seeing Ellen and her friends and her dad, looking at all the set design exhibitions of the final year students at the Royal Welsh College of music and drama. They were breathtaking without exception but it was very hard to rush around as I felt I didn’t have time to appreciate anywhere near the amount of effort that went into each of them, needless to say I spent the majority of time looking at Ellen’s work and was very impressed with the professional standard of her portfolio, I don’t think she will have any trouble finding work.

So I’m at hospital tonight because everyone is busy, but seeing as I need the rest I don’t really mind. Tomorrow hopefully I will be going to London to Laura’s birthday party with Ellen, and spending Sunday in Standlake with my sister, Grandad, mum and Ellen.

I have been working on turning pages with the assistance of a mobile arm support which takes the weight off my arm and enables me to bring my arm across and back in front of me. With the aid of a splint and an attached thimble I can fumble my way very very slowly through a book, this obviously gets easier with practice and involves some novel techniques as pretty much all of the movement comes from the shoulder and deltoids. Using a similar technique with a specially created elbow support and a gutter type splint, I can dangerously control the movement of my wheelchair from the hand joystick. This gets tiring very quickly and I can only do it for small amounts of time every day but it’s great to feel that I’m able to control my environment with more than just my head. Last weekend I met with a family friend called John Beatty, he has created a wooden gutter structure which slides on two orthogonal and independent rails, and monitors the movement using a infrared computer mouse. This enabled me to move the mouse on a computer screen and he is now looking at the option of having two such gutters, each with only one axis of movement, one for each arm in order to improve the precision of the mouse movement as I found it hard to isolate movement on one axis from the other with only one arm.

a picture of John’s mouse control device:

John's mouse control device

The last piece of news for now is that I now have a job offer from Roke, it’s a three-month part-time contract which is understandable considering the unusual circumstance of employment, but I should imagine that if I work productively the contract will be extended. I shall probably be working on network architectures and protocols using low-level programming language such as C/C++. the provisional start date will probably be some time in September.

Best wishes to all, hope you get to enjoy as much of the sunshine as I have been doing. Happy birthday to my grandad and Laura who have both had birthdays recently. Thank you for all the messages, I love reading them.

T

a picture of me at The Regain charity dinner (charity for tetraplegics):

regain charity dinner

Fish swims into a wall…

… Dam

no, seriously, I apologise for the length of time since the last post. I have been very busy and slightly lazy which has resulted in the lack of written news on the website. I have been spending more and more time outside hospital but progress is still slow with regard to the procedures for being discharged including accommodation and funding.

As I’ve said in the past, Simon (personnel manager for Roke Manor research) and I have been working towards a possibility that I might take up some sort of employment at Roke, which has involved regular e-mail correspondence concerning my progress and potential capability. Simon has been excellent in keeping in touch with me and encouraging me whilst not offering me false hopes, he has liaised with his superiors and technical colleagues and arranged two meetings which I have attended at Roke, an access to work assessment and a technical interview (last Wednesday). One of the main barriers to me taking up employment is feasibility of access and commuting but by applying to access to work scheme, this can reduce costs of adaptations and travel which significantly helped in persuading the powers that be to pursue my employment further. The technical interview was very challenging, I was interviewed by three senior engineers in charge of different departments. Systems engineering, FPGA and digital signal processing and enterprise software. Due to my previous experience of engineering and Electronics being within the computer domain and not in telecoms or signal processing I was unfamiliar with a lot of the questions asked. The interviewers new this from my CV but asked me how to approach problems and asked me to guess how things worked, obviously testing if my brain still worked. I learnt a lot from the interview and we entered some interesting discussions about Internet and wireless security, which I’m not very well acquainted with. After this I was interviewed by the director of the technical department I would be working in, who was very realistic about the options open to me and we talked about the feasibility of the commute and voice recognition software. I hear more from them during the week hopefully.

I attended a charity dinner for regain-which raises money to help tetraplegics- on Friday at the four seasons hotel on Park Lane in London, which was great fun. Sunday was my grandfather’s 88th birthday and involved a lot of Pimms, great live classical music including a piece written specifically for the occasion and relaxing in the garden. A very enjoyable day.

I am thinking about gadgets that will help me in the future as discharge becomes imminent. I am going to apply for financial help in buying an outdoor fourwheeled motorised vehicle/wheelchair with which I can travel about rough terrain in and control with my head, I am also looking at the possibility of a wheelchair which allows me to stand (important to put weight on my legs for the long-term), another device is a small computer which can be voice controlled and connected via a bracket to my wheelchair. This would allow me to control my phone, sophisticated environmental controls, access the Internet, listen and watch media, work all from my wheelchair. A new addition to my wish list is the FES (functional electrical stimulation) leg and arm bike which, using electrodes, enables your muscles to peddle a bike. This improves muscle tone, bulk, circulation and improves skin strength and condition.

In the housing front, the extension is steadily being built with the window and wall frames made of wood having gone up and this week the wooden roof frames should be up, drainage and technical drawings have been completed for the pavilion which will start construction directly after the extension. As the house extension will not be ready to live in for a few months yet, I have been offered a place to stay for six months in Witney, this will have a wet room where I can be showered (the lack of a wet room is why I cannot stay in Standlake living in my grandad’s living room) and is close enough to Standlake. I visit the property on the 10th of June.

On the personal care front, I am still working on trying to secure direct payments from the primary care trust. They are categorically against allowing this, but it is of paramount importance to me as my care needs are so complex and I require a support worker during the day and need to have maximum flexibility in terms of a care package. I have recruited the help of a law firm IrwinMitchell in order to create a care agency to employ my personal assistance through. I am waiting to see how cooperative the primary care trust will be.

Being so busy is very good for my morale, I have periods of a few days most months when I feel down, but as my friendly visitor Johannes said today, “the worse off you are, the more important it is to be able to count your blessings”. Very sound advice and very special thanks for the wonderful variety of food from Harrods that he brought to me.

Me my mum and my sister have all been glued to Tim Rushby-Smith’s book entitled looking up, Tim is a paraplegic and recounts his dramatic experiences with great wit and humour. The book has a lot which I can relate to including the early days drifting in and out of consciousness and not being up to discern dream from reality, the slow process of realisation and the importance of knowing how you are being treated and what is damaged within your body. I remember many of my very strange and involved hallucinations which seemed to last for years and have extremely complicated storylines, you never know I might feel like writing about them someday.

Special thanks to John for collecting me and putting up with me last weekend and everyone who visits, contributes to the trust, send me e-mails, writes comments and reads this waffle. I am looking forward to the Paleo Festival in Switzerland at the end of July which will be an adventure.

Lots of love to all

T2