July

2nd July 2018

My electronic CEILING-TRACK HOIST has just been installed by the great #NHS followed by several visits from hugely-supportive OT to train my carer team. This really is a key piece of the jigsaw. I can now transfer from bed to electric wheelchair or shower chair and – because I’ve now hired a WAV (Wheelchair Accessible Vehicle) and my platform lift is fully installed – that’s the ONLY transfer I’ll need all day once my Triple-Ostomy is complete!

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5th July 2018

Spent two hours with the amazing Tracy Thomas – #MND Care Network Co-ordinator for South-West England. My Triple-Ostomy is now to be the start of a cross-discipline MULTI-DECADE ‘Radical DisABILITY Project’ of pioneering research exploring ‘How best to THRIVE after Lock-In’, with ME as the guinea-pig! Unbelievably excited by the prospect!!

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9th July 2018

IN THE WEEK OF THE #NHS 70th I’m today admitted to wonderful @TorbaySDevonNHS to prep for tomorrow’s pioneering 6-hour Triple-Ostomy that’s never before been performed on #plwMND in UK or USA. Very excited! Whatever happens, it’s WORTH IT!! This is a LIBERATING opportunity. HUGE THANKS to all concerned. I’ll be back online after I’ve been fully upgraded to Peter 2.0…

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29th July 2018

UPGRADE COMPLETE. Home just in time to hold my brand new 4-hour-old Great Nephew, Edward! VERY LUCKY – my pioneering Triple-Ostomy has turned out a huge success, wth only minor complications that were quickly and expertly managed, though my brilliant #NHS team has asked me to stress that just because I did so well nevertheless the FULL RISKS (that could in the extreme have left me permanently on a respirator) remain for any #plwMNDwho may now choose to follow. Nevertheless, they also tell me that my op proves that this is a perfectly valid option that CAN now be made more broadly available. So, going forward, everyone with #MND has an extra choice where previously we had none. As for me: PETER 2.0 IS ONLINE!

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30th July 2018

I am IMMENSELY PROUD of #NHS and the exceptional team @TorbaySDevonNHS. They showed great courage to proceed with my ELECTIVE Triple-Ostomy despite all the anticipated risks for #plwMND. Note: This trailblazing op did NOT happen in a private US institute or even an elite UK Teaching Hospital. It happened in Torbay. KUDOS to absolutely everyone involved!

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31st July 2018

My brilliant #NHS anaesthetist – as it turned out an absolutely life-changing member of the @TorbaySDevonNHS top-level surgical team that took on my challenge – had warned that because of my #MND she might NEVER be able to get me off a respirator after my major Triple Ostomy surgery. To best manage the risks, in theatre she avoided ANY muscle relaxants and certain (otherwise common) anaesthetics, and unusually only slowly stopped them once I was safely in ICU, one drug after another. I was then kept on a forced-ventilation mask till I gained consciousness. Then as a trial they took if off…