January 19 – 20

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We had a great weekend in Standlake – Tom, Ellen, Hazel, Raj with Michael, Susie and me intermittently. We sat and talked, watched films, ate supper, walked in the rain, watched a film and had a great time. Full set of photos is in the flickr collection (go to sidebar or to www.flickr.com/tnabarro)

parole date in sight

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I seem to have a habit of writing very intermittent posts, seems strange to me that being incapacitated could be such a busy affair. Nonetheless I have been keeping myself busy programming, scripting, browsing, watching lots of movies (of which no country for an old man is a recent favourite), discussing standard funding and related discharge issues, developing USB mouse emulator and thinking. I’m going to the theatre on Thursday to see the history boys with a friend which should be fun, and have been enjoying visits to grandads house and Ellen’s dad’s house near Winchester.

Ellen’s dad has raised an extremely large amount of cash through asking his clients to donate to the pavilion trust as Christmas gestures, which has been incredible, and has also bought two hoists which is very generous of him.

Spent a very nice day with mum today, sorting out papers, finances etc. I have been doing hydrotherapy twice a week, which is good fun although I get very cold when I get out and find it difficult to recover to a decent temperature for a long time afterwards, it’s a nice feeling being in the water, I have always loved it but is now slightly different experience. I’m getting fed up with not being able to move myself round, I really can’t wait until I’ve got my power chair back. Also then I can start working on getting a mini computer fitted and working with environmental controls.

My collar should be off first week of February, and antibiotics finished by the end. Provisional discharge date is set for the 13th of February although I think this might be slightly optimistic as there are still funding issues and accommodation issues to sort out. I can’t wait to have a decent Internet connection and an external IP address so I can do everything remotely and properly sort out my computers.

I have been thinking a lot about personal assistants recently, and have had a great offer from a good friend to help me with various tasks during the week when I’m released into the wild. There are various nurses and healthcare assistants who I would love to employ as my personal assistants, and this may be possible although requires more diligence on my part than using an agency. It’s such an important decision that I really need to make care with and therefore I’m spending a lot of time thinking about it.

Another important aspect will be to be able to travel freely, as I will be based out in the sticks, and will need to be able to travel into London or Oxford to see friends and maintain my sanity (what’s left of it). So I will look for a personal assistant who can drive as well.

Hope everyone is well, seems like a busy time of year for most people, best wishes.2

January 9th and 11th 2008

January 9thJanuary 11th

I met up with Tom for some hours on January 9th: he was in the hydrotherapy pool at the centre and then we spoke with his doctor. I took a picture of him in his wheelchair with his collar off (he has to wear it till the start of next month). Tom showed me some of the work he has been doing on the mouse emulator. I met Tom again January 11th evening after driving the van to him from Standlake – Ellen was with him in his room on St Joseph’s Ward when I arrived. We set off quickly and I sat in he back of the van while Ellen drove us to the house of John Stewart, her father, near Winchester. It was wild weather – windy and snowy – but the drive was good. We all stayed at John’s which is a brilliant place. It was good to see how quickly and effortlessly the transfers were made (John has bought a great winch) and how relaxed Tom was in John’s house. I took a picture of Tom as he was lying in bed before we all went to sleep (actually early morning January 12th). Tom will return to the centre on Sunday afternoon, together with Ellen and Ollie. I am posting this from New York – I hope to be back in UK at the end of the coming week. [Ollie departs for Australia on the 17th]. Thanks to all.

happy 2008

Oliver, me, Polly, Elena and PiercePolly and MeElena and OliverBarbara and me

Hello everyone,

happy New Year, I hope everyone had a great Christmas.  My Christmas was very nice, a bit quieter from usual but very enjoyable nonetheless.  I had lots of visitors and spent lots of quality time with my family including cousins and aunts and uncle from the US, the transition went a lot smoother than expected, and the house was surprisingly easy to navigate.  It was great to see friends in a nonhospital environment, and I spent a lot of time playing board games and very little time watching telly or films as there weren’t many opportunities which created a welcome break from staring at screens.

Being around friends and family all the time made me feel very relaxed (unsurprisingly), and asking for help all the time became easier, as I felt guilty for having to take up so much of people’s time.  It will be easier when I have a live-in carer who will be able to do a lot of this instead of family and friends, but everyone was very generous over this period and looked after me very well and willingly.  One of the best parts was being able to wake up and go to sleep with Ellen every night2, along with being in a very warm and cosy house eating good food.  My appetite was very healthy over the Christmas period and only suffered slightly with a brief infection, which is a fairly normal occurrence.

thanks everyone who sent cards, messages, presents, donations and everyone who visited for making it a very enjoyable Christmas and New Year.  I had a great New Year spent playing a board game wit Ellen, Raj, Lizzie (Ellen’s friend from school) and my mum and grandfather, we tried to get into a local pub to get Raj a pint of Guinness, but it was a private party.  I didn’t manage to drink much because I was on a nasty antibiotic, but at least ha a few shots of whisky, which I greatly enjoyed.

I am back at Stoke, in the outpatient ward (St Josephs) and getting used to being back hospital, the blow is being softened by being able to spend time with Ellen.  We both send all best wishes     for this new year