view finding

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

6 thoughts on “view finding”

  1. Dear Tom,
    I hope you are feeling better. A life as busy as yours would wear most people out! I just wanted to say how excited I was to read that Roke are interested in giving you a test-run. I am sure they will want to extend your contract once they see what you contribute. It was exciting as well actually to see the prototypes in wood of the equipment that will give you a step change in your control over things that don’t respond electronically – like pages of books!
    Congratulations too to Ellen and fingers crossed for the next stage for her.
    And the building at Standlake looks as though it is going to be a very good environment for you. It makes all the difference to live somewhere beautiful – we shouldn’t take that for granted – ever.

    One question I have is that, since people have tetraplegia forced on them through accident or otherwise all the time, why the kind of equipment you are having built for you isn’t developed as a matter of course. Is it because there is such a tiny ‘market’ and the equipment has to be custom built? How much is provided through the NHS and how much privately?
    It was the same thing for Gordon though there must be a much bigger ‘market’ for people with paraplegia. I remember all the effort that went into a machine that enabled him to control from his chin the loud pedal on a piano which he needed for his jazz.
    Here I have a mere 70 papers and 5 books to read before the end of the month for this national research assessment exercise (plus the exams and end of year events) so if you now don’t hear much from me, you know why! Grrrrrrrrr
    with love and a hug amid the jungle noises,
    Barbara

  2. Dear Tom

    Thanks for all the news and I too hope that you’re feeling more rested. It sounds like a very tiring week – not only in terms of whizzing around from place to place (now I understand your email address) – but also because it involved more negotiating, more decisions, huge effort with the page turning, and probably a lot of emotion seeing Ellen’s end of year project.
    Many congratulations on the job offer! That’s exciting, and it’s so good to have got through that first step – probably the most difficult one.
    I love the design of the Standlake extension by the way, and am grateful to David and the other photographers. You did look splendid in suit and tie at the dinner!

    All good wishes
    Pat

  3. Dear Tom,

    Delighted with all your news and the latest comments. I was going to say almost the same things myself but Barbara, Pat and Tom beat me to it !

    You really do look like a Company Director in your suit and tie at the dinner. Would the two people either side of you be your care assistants ?

    A three month part-time contract is quite realistic and in fact the norm here in France following any serious illness.

    I had to pause and think for a minute regarding your “white box appliances” and then the penny dropped!

    Have a great holiday – wish I could be there to see Thomas Dutronc !

    Best wishes
    Marie

  4. Thinking about Barbara’s comment on specialised equipment etc. I forgot to mention that Roger Marconnet – Director “Marconnet Tecnologies” was recently awarded two medals in the april Paris Fair – Concours Lepine.

    Gold medal for his “vêtement de flottaison” which keeps the head out water and enables the handicapped to use the pool or go for a dip in the sea etc. in safety. (190-250 euros).

    Silver medal for his “Boma” which is – wait for it – an electric wheelchair “tout terrain” (12.500 euros).

    Shame but I don’t know how to send a picture of the wheelchair. It looks a bit like a go-kart !

    Marie

  5. Dear Tom
    Great to hear that you have been offered a temporary job which hopefully will develop further and that you’ve got plans also to move to temporary accomodation before the Standlake is ready. Lots of hard work on your part and others to achieve that I should think. And it’s good to hear you saw Ellen’s exhibition which sounded fantasic. And you looked great at the dinner. I remain in awe and humbled by your amazing efforts and grace,
    Best wishes
    Maggie McKenzie

  6. Dear Tom and David, we are thinking of you and hope Tom will feel better soon. David, we can’t wait to see you in New York, when al is well with Tom again. Much, much love,
    M&G

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