Independence via Electronics

This is Tom, dictating this post using voice recognition software called Dragon and Navigating the mouse using an infrared pointing device called SmartNAV. I’m on my own at the moment as Ellen is attending her second year college ball. As I am now able to independently communicate via e-mail I’ll be trying to answer more as I’m aware that many e-mails have gone unanswered. Also I will try to write more posts although the progress with my health is not as exciting as it was, the steps are slower and sometimes more painful as they mostly involve physiotherapy. I am working on achieving a speedy process of rehab and have been targeting October for release although am aware that the accommodation may not be ready by this time. I am hoping to start hydrotherapy fairly soon which will be a great experience as I love swimming so much, it is also a great relief to be able to use the gym as it becomes a more sociable experience than physio in my room. I just hope I can keep this big side room for a little longer as I don’t know where I would keep all my junk around a normal ward bed.
Dad is coming to visit soon and I thought I’d take time to post some information that Rob Holden has written to explain why he is going to perform such a crazy feat for the Pavilion and Backup causes.
There will be a new website put up for the purpose of Rob Holden’s fundraising adventure, I will be adding a link as soon as it is up. This will be a method of keeping track of Rob’s progress in the mountains. I would like to thank Rob, his support team, Tom Ernst, Siobhan and Bob, Linda and all other members of the Switzerland fundraisers for all the effort that they have and will spend in their endeavours. I would also like to thank mum, dad, Grandad and all others who are helping to arrange accommodation and the potential of a Pavilion.

Now to hear from Rob:

‘when you are going through hell, keep going’ (Winston Churchill)

Rob Holden (Why?)

The news of Tom’s accident made me realize how anybody’s life can change so completely – and with so little warning. One minute you can be on the top of the world. Things are moving along nicely. And then you look away for a second or you make a decision that puts a series of events into motion, and everything changes.

I have met Tom twice. He was passionate about sport and taking on challenges and relished adventures. And in that sense, I believe we are similar – we enjoy pushing the boundaries and the sense of achievement that comes from enduring mental and physical test. I greatly value Toms appreciation of what the race entails. Though I cannot, nor will I pretend to be able to fathom the challenges that Tom now has before him. However, part of the attraction of this race for me will be to test myself physically and mentally – a process I imagine Tom goes through hourly and daily.

In closing, a word on teamwork – the value of which anyone who has ever undertaken any high risk sport, never underestimates. While I will run the mountains alone, I know that I have a team of people with me who have supported me along the way. They have dedicated their time, their care and their expertise – all of which have helped to build mental and physical stamina. I am sure if Tom could be, he would be alongside shouting at me to get a move on every step of the way. If together we can raise awareness and funding for the pavilion and the Back Up trust through this small endeavour and in so doing, make a difference in Tom’s and other people’s lives, then I believe it will be a race well-run.

Assimilation

We have been working on plans for fund raising with the Pavilion Trust Fund (see previous but one post), for the creation of a communal space to be ready by the time of my release.  Rob Holden is planning to help with fundraising jointly for the PTF and the Back-Up Trust – which organises trips for people with spinal injuries and therefore greatly improves the standard of living for many - Rob is planning an ultra-marathon across the Alps, more details to follow.  Tom Ernst and collaborators in Switzerland are organising this fundraising effort, they deserve a special thanks.

Thankyou for all the generous messages about my degree, I am most grateful to my lecturers and the school of electronic and computer engineering at Brunel for having confidence in me.  In response to Tim, I haven’t received the official percentage but believe it to be above 80 :), thanks for the offer of carpet laying, we will be sure to take you up on the offer.

 The supply of audio books has been amazing, although I haven’t been listening to them at the same rate as they are being received.  Many thanks. 

After my third negative set of swabs I have now been cleared of MRAB and MRSA which means I can use the gym as a normal spinal patient.  My first experience of the gym occured today and I had my shoulder muscles electrically stimulated via electrodes.  Using the gym enables me to perform a wider variety of exercises at more flexible times.

With regard to life in the rehab ward, the nice nurses are keeping me amused with their dodgy and enlightening conversations in the morning. 

Thanks for the comments as always its such a pleasure to hear from friends.  It enables me to be confident in what I am trying to achieve.

Tom’s plans : a cottage at Standlake – and the Pavilion Fund

Tom here

The usual reason for delayed discharge of patients from the National Spinal Injuries Centre is that accessible housing is not yet ready for them. So Stoke Mandeville is encouraging me to think ahead. They say that I might be able to leave the hospital anytime from January 2008.

So we need to get prepared. Rather than trying to convert our (excessively vertical) Oxford family house to make it accessible, I intend, when I leave here, to move to West Oxfordshire.

My grandfather, Michael Graham-Jones, lives in an old house in Standlake, with a large and level garden. The plan is to build a wheelchair-friendly extension out into his garden for me, as Michael already has planning permission for such a single storey structure on this site. We have decided on a wood-framed building (www.oakcraft.co.uk) for reasons of ecology, economy and speed of erection. The community-based occupational therapists are already in the picture, and will advise on details of what I will need.

We have now come up with a new idea. Because the extension will be a small living space, it has been suggested that we could build a studio – The Pavilion – in another part of the garden, where I could invite friends and colleagues to visit me. Michael also sees this as a possible venue for Exuberant Trust charity events, which will benefit other young people (see www.exuberant-trust.org.uk).

The crunch is that we will need to raise the funds for the Pavilion from scratch.

So we are setting up a Pavilion Trust Fund, to which any well-wishers are invited to contribute. Donations will go towards the costs of building this social and work space, and the provision of equipment and facilities for potential improvements to my mobility and future career aspirations.

We will post more details on the Fund soon. We are in a hurry to get both the extension and the Pavilion built by the time I am ready to leave hospital.. We would love to hear from you if you have ideas or expertise to offer, or think that you might be able to help in raising funds for the Pavilion.

Susie

It is just lovely to visit you in your new huge room which opens out onto the brick courtyard with tables and chairs .. Extra great to see you buzzing about the hospital independently instead of having to be wheeled around by us; visiting the staff on St Andrew’s ward to see if they are managing without you; doing 3-point turns in the lifts, and all. A whole new life, up and going after 7 weeks in bed. Michael was so impressed by your rehab that he got competitive and made the trip across from Standlake to Aylesbury in his new car today – he’ll be back soon, to talk more with you about Chris Isham’s work on topoi (recent New Scientist article). I shall come with red geraniums for your windowsill, and more forms to fill in, punctuated by pancakes and maple syrup (1) from taf and Fred (III).
Love you forever .. Susie
(I’m using Polly’s log-in, as I have encountered barbed wire every time so far).

PS Some time back, you showed your e-mail address for people to write to you & Ellen, outwith the website. Here it is again : whizz2000@hotmail.com

Rehab

Firstly apologies for not having communicated in such a long time since my previous post. I have got used to being off the vent fully and breathing self sufficiently, I’ve got my appetite back, and gained some weight. I’ve also lost the trachy and the hole is healing well with just a scab to show and a huge belly button looking crater.

On Friday Ellen and I were visited by Polly, Olivia and cousin Fred. We visited the Occupational Therapy Centre to try out the ‘Smart Nav’ technology which would enable me to use a computer. This uses a metallic sticker on my forehead to reflect an infa-red beam which controls the mouse. Everyone was impressed at how successfully it worked. We also tried ‘Dragon’ which is a speech recognition tool with which we had moderate success. Olivia and Fred both brought wonderful CDs which have entertained me greatly. 

Two days ago I moved downstairs into St David’s ward from St Andrew’s whose friendly staff we will all sorely miss. The new ward is a rehab ward as oppose to an acute ward therefore the focus is on preparation for living outside the hospital. Now with more physio I shall gain muscle bulk in my shoulders and neck. 

The new room is huge to accommodate gym equipment as I’m not allowed in the gym due to my MRAB superbug infection status (similar to MRSA- it only effects seriously ill people with weak immune systems).

Yesterday I tried out my first powered wheelchair. This is controlled by the chin. I’ve been practicing since, in the process causing much mayhem around the ward. The powered chair allows me to have much greater independance and is possibly one of the most gratifying steps of recovery so far.

Fred and Tom visited yesterday from Oxford – two of my oldest and best friends. Although we did very little it felt amazing to hang out with old mates, as I would have before. We spent the day chatting as friends do and wandering around the hospital grounds.

Other visits include Tom Ernst, Ellen’s cousins Emily and Jo with Matt and Dan, Wheezy and Dad. All of whom attended a picnic on a field opposite the A&E entrance of the hospital. This was a brilliant day.

On another day I took a trip to the chippie down the road with Tom Ernst and Ellen and ate a lovely greasy battered sausage with Ellen on a park bench.

Ollie and mum visited this weekend after Ollie finished his exams. We had a great conversation about life priorities and relationships.

Other visits which I’ve appreciated include Laura, Raj, Cedric, Ivan, Babak, Matt, Riaz, Jay and Vicky, Barbara and Claudia and Kennah.

Today my cousin Luke, who’s living in California, visited and we caught up.

Special thanks to Mandy, Jay and Vicky and Will and Anna for the parcels and everyone else who sent cards and wrote comments on the website.

Sorry if I’ve forgotten anything but Polly’s fed up of typing!

Lots of love and best wishes to all.

June 11th

Tom moved to the rehab ward – St David’s – yesterday (Sunday) and we heard today that he is now more mobile. He is also mastering the software and gadgets needed for independent operation of the computer. (I am not able to be with Tom right now – I write from the Pacific Health Summit in Seattle whence many well-wishers send their greetings).

Picnic in the fields … June 3rd: Trachy out … June 4th

Hot on the heels of a visit by Claudia and Kenah on Saturday June 2nd (see picture), on the Sunday Thomas Ernst travelled to Aylesbury from Geneva (en route to paddle a bath down the River Thames) and David came in from New York. Ellen’s cousins Emily and Jo were visiting her. After Tom N had got up, he had a picnic lunch with Ellen and her sister Louise, Emily and Matt, Jo and Dan, Thomas Ernst and David. He asked that it be outside the hospital and we found a spot in a field looking oveer the Chilterns. It was quite hot, but there was enough shade for most of us (though we had to look out for stinging nettles). We ate very nourishing food, and chatted for hours (see pictures). David lent Tom his Pradas (and as you can see Tom looks good in them). This was another step forward for Tom who hopes to have the trachaeotomy tube out tomorrow. Polly came from Oxford and we all tried out different gadgets for stroking and stimulating the scalp and reducing neck pain (Orgasmatron – heard of it??). And we had a fun evening: we laughed a lot. Thanks for coming Thomas.
Next day (June 4th) David returns – meets up with Barbara (first time after nearly 20 years) and they watch as the Tracheotomy tube is removed. Brilliant. When Ellen comes in we all share the joy of a great LEAP forward. The doctors visit en masse, Tom has lunch (swallowing feels very different) and we install the new laptop. David starts his travels again.

Tom and Jeff celebrate the removal of the Trachy tube

Off the vent!

Been a bit busy so have not had time to post, but lots of progress… Been off the vent since Monday (five days!) and had naso-gastric tube removed also, so am eating lots of solid food (and milkshakes, yum.)  The trachy is due to be removed on Monday and if all goes to plan I should be also be relocating to the rehab ward.  Been sat upright in the wheelchair for progressively longer periods.. now around eight hours at a time.  We (Ells, Tom and Weeze) are all quite weary here tonight, but will post more soon.  Thanks so much to everyone for all your lovely messages.