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