I am sat 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 Monday 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:
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.
a picture of me at The Regain charity dinner (charity for tetraplegics):