Progress May 13 – 19

Sunday May 13th:  David spent some hours with Tom and Ellen while in the UK en route from New York to Geneva (the World Health Assembly started on Monday May 14th). Tom was looking great: talking, able to sip fluids, and breathing on his own for regular periods each hour. The breathing part is hard work, and from time to time Tom’s airways get a bit bunged up. He is helped to do this work through the skills of the nursing and medical staff on St Andrew’s Ward, the physiotherapy team and the respiratory technicians. David busied himself removing a few tracks off Tom’s ipod, cleaning the “Heroes” DVD so that episodes 10 and 11 are viewable and obsessing about TV access. David told Tom about some of the reactions he is receiving to posts that he and Ellen put on the website. David spoke of his contacts with other people with serious injury to their spinal cord at the C4 C5 level: one person in particular (who works in a senior position in a premier US public health institution) has been kindly expaining how he has progressed following a swimming pool accident when he was 18. David then went on to see Polly who is much better – recovering well from her operation.

Wednesday may 16th:  David returned to meet with Ellen and Tom Wednesday evening after three days at the Assembly. (There is much focus on influenza pandemic readiness, sharing of virus samples and ways to ensure that poor communities will be able to benefit from vaccines effective against the yet-to-appear pandemic virus). Tom looked great, continuing to work hard at the breathing and – with the nurses and physios – at keeping his lungs clear. As well as Ellen (joined this week by Mandy), Susie and Polly have spent many hours with Tom: Tom Sheppard and Hugh Palmer visited, and loads of great letters and messages have arrived. An anonymous friend (though David thinks he can recognise the writing) sent an Arsenal programme with a signed message from Arsene Wenger. It looks as though there will be a TV in his room before the end of the week (in time for the cup final?). Tom Ernst, who David met in Geneva with Carole, Bob, Siobhan and Andrew, sent Fawlty Towers…

Thursday 17th, David went to Warwick to be with Ollie, then they travelled to the hospital together to visit Tom. They all worked together helping Ollie revise history for his finals which start on Monday.

Friday 18th May – we were together again.  Tom was explaining to us how he is handling his own feelings about what has happened and what he can expect to do in the future. Inspiring stuff for both Ollie and David. We were with Ellen and Polly, and Ellen’s mother Mandy, Susie and her father Michael.

Ollie and David went on Saturday May 19th: we watched Tom have a hair wash (pure pleasure as he loves having his head stroked).

Tom’s progress remains good – he is eating/drinking mashed potato, jelly, soup and yoghurt; he is off the ventilator of 15 minutes every hour, and having fewer problems with “plugging” – when the air entry to his lungs gets blocked with secretions”. David went back to New York on Saturday afternoon, taking pictures of Tom to show Lucas and Josie, and they were able to speak with him by phone Sunday morning (probably contributing to his sore throat).

18 thoughts on “Progress May 13 – 19”

  1. ello ello! So! Jimmy Saville envious of your good looks eh? Hmmmmm – i guess that’s a compliment but one would have hoped that his basis for comparison wasn’t him!!! Didn’t realise Molly got to meet him – she’s kept surprisingly quiet about it if she did!

    Anyway, really great as ever to hear of your progress – fantastic stuff and really encouraging. I think tom that not only have you pushed yourself so far recently but you’re also pushing so many of us to make the effort to actually DO something for – to push further and harder in whatever it may be. Hope that gives you a bit of a boost. I guess you could call it inspiration.

    Looking forward to seeing you soon – I’ll be the one with an owl puppet on one hand and a rain machine wrapped around my head. Designers eh?

    Also – I’m trying to get an audiobook for you – i’m finding them really engrossing at the moment and great company when you’re working alone. Maybe you could let me know what kind of thing or author you like the sound of?

    Take care bud
    tom (from the wrong side of the wales/england border – cmon we all know which side that is!)
    x

  2. Hi Tom, We heard recently from M. Balmer at the farm in Founex about your accident and then I met Hendi (spelling?) on the train last week and she told me about your website which is a fantastic idea as there must be so many people thinking about you. So very sorry to hear about your accident but you sound to be doing great and showing loads of courage and determination! It is great to be able to hear about the progress through the web-site…John and I send you all the very best and will be thinking about you, likewise Gary, who is on his way back from London after a few years there. All the best, Susie and John Burke

  3. great news ur able to get fluids down and able to b without the ventilator for a longer period!! also, glad to hear ur watching some gd tv atleast!! i managed to go through all o the episodes in 1 go 😀 they get better from episode 14!! enjoy xx

  4. So glad you can drink. I realise in the scheme of things there must be other matters of more importance but these little things mean a lot. I am astonished by your resilience, and courage.
    I have just spent a jolly few hours trying to ear tag the new lambs. They are sturdy by now, and fight back! It is a bit like playing rugby against a thick blanket with horns, and a bruising encounter. The orchard loks very pretty; 100 cider trees, all in full blossom, and the hives have huge clumps of bees dangling from their bases so with luck, pollenation will be going well. I hope to make cider this year, not just sell apples; so practise that fluid swallowing, won’t you? Within reason, of course.
    All best wishes from the children and me,

    Nick Bradshaw

  5. we have finally managed to get on here to make a comment after computer breakdown. We are now using a laptop while the main PC is lying in a heap.
    We have all been thinking about you a lot and it is wonderful news to hear about the progress you are making. Your courage speaks for itself. All the family send their love and now we can tune in will talk to you again soon
    love
    the sheppards and your furry friends

  6. Hi Tom and Ellen,

    Sipping fluids, what great news! Enjoy all those great tunes folks are sending you
    – doubt you would be interested in the music I mainly listen to (1970s/80s R&B, but
    if you are let me know. We are hopefully heading off to go camping in the Ardèche
    region for the Ascension holiday weekend if the weather remains rain-free. Take
    good care. love, The Whitakers

  7. Hey Tom!
    I’m very very glad to hear you have a progress! Keep on getting better and better man!!!
    I’ll be waitng for you to get up and then you and Ellen can come again in Bulgaria to visit me! Ok?
    Hmmm, I’ll try to send you some musik, I’ll give it to Jen on her way back…
    Well, I can’t think of anything else to say… We’ll keep in touch! You’re a brave boy! I’m with you!
    love tech

  8. Hey Tom!

    Sorry I haven’t posted in a while, its a busy time of year for everyone I think and I have either been concentrating from my exams or trying to escape entirely from the pressure (playing games…).

    I managed to get that job I was being interviewed for last time we spoke! I am very happy about getting it and I know it will be a good start for me. I know you wanted me to go for the job at roke and I considered it, but you know what I am like, if I went for that job I would feel like I was taking something that you earned and you deserve and I dont think I would feel happy doing that.

    Anyway I bought an xbox360 to celebrate 🙂 Admittedly its been a little distracting as I still have one more exam but I definately needed to relax and celebrate a little and I feel like I made a good choice.

    It sounds like you are making amazing progress, I am very pleased to hear it and looking forward to seeing for myself soon.

    By the way, I hope the server has been acessible for you I have been checking it every now and then and occasionally it has got itself into an inaccessible state without me realising. You must let me know if you want/need to access it and you can’t, or I can’t do anything about it!

    Dude also, you realise that by having your server on my network you can access my fileshare (\\ice52, when my computer is on, which is most of the time) which will have all the latest episodes of heroes, lost, & some other stuff. I and my housemates have been taking advantage of your large library of data 🙂 It’s your right, I would say duty to return the favour…

    If it is easier I can send you them on dvd, just let me know. I shall remind you my email is soulnemesis@gmail.com.

    Hope you are looking after Ellen, and Ellen I hope you are doing well.

    Looking forward to seeing you both soon!

    Wayne B.

  9. Dear Tom
    Maria & Peter Leisinger whom you must know for a long time have spoken to me 2 days ago about your accident and asked me about Stokemandeville etc. I am working near them in a large Rehab hospital in Valens (www.klinik-valens.ch) for 20 years now and I see many many many patients with neurological diseases or after injuries of brain and spinal cord. I told them about an event we just had last week at our clinic: 55 PhD students from the Center of Neuroscience in Zürich (www.neuroscience.unizh.ch) came for their retreat for 3 days and presented their work in short lectures and on posters and I discussed and demonstrated patients with various difficult neurological problems which obviously motivated the researchers for their future work. After a long and intensive day we all went to a typical local restaurant with an old winepress and there a patient of mine made music and song to the best possible entertainment – and he is tetraplegic after a ski accident some years ago. This was so impressive for all of us to see & hear him perform with his apparent handicap but coping so well and in fact much better than many other people without any limitation of their functions. And in one of the first PhD retreats of this kind some years ago their was a student of biology who at the same time was a triathlete who had won several competitions, and he also had an injury when he was training with his bicycle in Japan and broke his neck and had a paralegia and only recently I saw him performing as a concert pianist with a self-developed technique which allows him to use the piano pedals by blowing to a device in his mouth. Maria and Peter thought that you might be interested to hear these stories of para/tetra patients who in spite of their physical handicap were able to develop a very rich life of which many more people can benefit. I hope this may help to encourage you on the difficult way that lies ahead of you. I can only serve as a translater or interpreter of the life stories that my patients tell me. But the advantage of being in Neurorehab is that you oversee long lifespans and can observe and accompany long periods. I wish you all the best, courage from within and good suport from friends and family. Best wishes
    Prof. Jürg Kesselring
    Head of the Department of Neurology and Neurorehabilitation
    Rehabilitation Centre
    CH 7317 Valens
    Switzerland
    Tel +41 81 303 1408
    Fax +41 81 303 1410
    kesselring.klival@spin.ch

  10. Dear Tom, and everyone around you, Your website is the first thing I logged onto after getting back overnight in steerage from Washington with an unusually bumpy flight and sweet child next door who was sick..

    It’s great news!

    One thing at a time though: breathing, talking and sipping fluids sounds more complicated than most people reading this can do. I can hardly put one foot in front of the other right now – too tired to sleep, too tired to work and it’s too wet to mow that lawn. Oxford looks very shabby compared with Washington – and the more attractive for that. So does my house and its contents and that’s not so good. I went there to attend a Board meeting of an institute which works on food and nutrition policy – takes me back to the time a quarter of a century ago when I worked alongside your dad. Yesterday there was a seminar at which some great and good were present including Robert MacNamara of (the Vietnam War and then) the World Bank. He is now very old and has no inhibitions (though I think he probably never had inhibitions, now I come to think about it..). He was quite outspoken about the habit of the ‘managers of the modern world’ (pointing at several present) to make goals they knew full well could never be met. He felt this is completely irresponsible and corrupt. He was talking of the millennium development goals – but you might just as well talk of our own official goals to reduce CO2 to 80% below 1990 levels by – when???? 2050 or 2100 and ??? HOW please? There is something in what he said – making a goal you know cannot reach devalues the entire process. But one after another people got up and said ‘We need goals we can’t reach to give us something to believe in and stive towards’. His reply was: ‘Make realistic goals then’. But it is often very difficult to work out what’s realistic. I thought about your huge progress then and how you are probably not making unrealistic goals but very small ones that you inch your way towards day by day and I think there’s a lesson for us all. But maybe I’m completely wrong on that!
    with love from us all,
    Barbara

  11. Hi Tom,

    I was so pleased to hear Hugh had got over to Aylesbury to see you. Its my turn next – I’ll try and come next week after we’ve taken our Artweeks show down. Its been so tiring doing this show and last night we just thought ‘oh hell’ lets go up the road and have a beer and not do anymore of all the things which remain to be done at the end of every day doing this show. We were bombing along the road towards the anchor when towards bombing along came your sis and her pal… Polly looked her usual beautiful and bubbly self. I’m sure you’ve seen her party trick of pulling back her hair and showing you her scar… wowza. A biggun’ eh?

    Hugh found you really inspirational – your indominatable spirit – I need to tap into that so I’m coming over soon.

    No recent news from Ged who is somewhere – either in NZ or en route to NY or in NY…. dunno. But when he’s back he’ll definitely want to come over and see you so that’ll be my second visit!

    Fantastic to hear about these wonderful achievements – Polly said you ate some mashed potato….. amazing …. sipping, breathing, mashing…. WONDERFUL.

    Oodles of love
    Hoonie xx

  12. Dear Tom, Like so many others I check in with you every day, and am so pleased to hear about all the things you can do now that you couldn’t do 3 weeks ago – so keep up the great work! And I have no doubt it is hard work… It was a nice surprise for me to speak to David this morning, and I also had a chat with your Mum so I know you had loads of visitors today. Kenah and I want to come and see you, so I will check out with Ellen when would be a good time and what we can bring you. See you soon, and lots of love, Claudia

  13. Vědci vypěstovali vlasy z kmenových buněk

    17.5. 2007 15:30

    Uším milionů mužů po celém světě může tato zpráva skutečně lahodit jako božská mana. Lékem na plešatost však nejsou žádné preparáty, potravinové doplňky a zázračné vodičky, ale kmenové buňky. Americkým vědcům se z nich poprvé podařilo vypěstovat vlasy.

    ——————————————————————————–

    This could be good news for David and maybe you one day Tom

  14. Tom.

    Just to remove mystery. New American cell based discovery for curing baldness !
    If you have inherited your fathers genes .

    Lots of love from all Rawlences

    Simon

  15. Tom,
    have been reading the website regularly and have heard through my mum how much progress ur making! ellen sounds like an amazing person… really hope u got to see the football….hopefully i will be able to visit soon. keep it up
    lots of love
    kenah
    xx

  16. Hey Tom,
    Just thought I would write a comment to let you know I had been checking in, progress sounds good. Anyway hope you got a TV for the football yesterday, more importantly the rugby this afternoon.
    All the best, John

  17. bonjour tomas c henda ,karim et sabrine j espere ke tu va mieux dieu te protege on t aime fort ! et on pence foor a twa ¨! on regarde de tes nouvelles chaque jour et on espere ke l on parra venir te voir dans peu de temps ! et sache k on t aime beaucoup ! soit fort !et on pense toujour a tout se ke l on a partager emsemble !gross bizouxx on t aime for t toute la famile et on prie pour toi chaque soir pour ke dieu te protege

  18. Please don’t mind this, Tom, but since I don’t have Ollie’s email address, everyone at 36 Victoria Road is thinking of you, Ollie, and wishing you good luck and a worthy performance in your Finals. They are tough things, those exams, but they don’t last for ever. It is wonderful to see the photo of Tom with Michael looking well, to read the good news of Polly and to imagine Tom’s pleasure having his hair washed! That is the best part of going to the hairdessers as far as I am concerned!
    Who won? I must be the only person who doesn’t know, even though I have just driven past the stadium…
    Cringe,
    Barbara

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