September

5th September 2018

EVER WONDERED WHAT DYSPHAGIA LOOKS LIKE? I did. So, I’ve just spent a fascinating hour at @TorbaySDevonNHS with a fibreoptic endoscope shoved through my nose till it dangled above my voicebox. That’s the image you can see in the monitor. My #MND is changing my swallow – sometimes my windpipe stays shut far longer than it should. But thanks to modern science I can watch! How cool is that?!?

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9th September 2018

I’m just back from my first Board Meeting as a trustee of the MND Association, here in the pic with wonderful CEO @sallylight17 and equally wonderful Chairman Richard Coleman. I’m utterly convinced that the Association is a unique catalyst to improve the world of #MND, including guiding #plwMND to THRIVE when we become Locked-In. Really excited!

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15th September 2018

‘M NOW ON 8-HOUR VENTILATION at night as I’ve only got 65% lung capacity. Heartfelt thanks go to the brilliant Jon Palmer at Plymouth Hospitals NHS Trust who is my vent expert. Far more importantly, he’s also Chair of the first UK-wide audit of tracheostomy ventilation in #MND. The deadline for input to the study is now only two weeks away, yet I learn that some centres STILL haven’t submitted data. You know who you are. SHAME ON YOU! This is VITAL research!!

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18th September 2018

TALK ABOUT HI-TECH! This small #NHS gizmo has been giving me 8-hours humidified ventilation for the last week. What’s amazing is that each day my vent team 40 miles away has been able to review my breathing throughout the night and as needed change any of the settings REMOTELY!

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23rd September 2018

VOICE BANKING – BUT NOT AS YOU KNOW IT! I’m spending 30 hours in this recording studio DiscoverHannahs to research how to add not just Expressiveness to my existing synthesised voice so I don’t sound robotic, but ALSO add some Personality. Really? Really. Really?? Yes, REALLY! See what I mean?!?

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30th September 2018

FABULOUS TIME AT #MNDawareness day run by MND Association Exeter & East Devon Branch. Great people and speakers. Really refreshingly POSITIVE messages throughout! The pic is me with amazing and hugely-influential Tracy Thomas, #MND Network Coordinator of SW England, a truly key post funded by MND Association. Tracy is a staunch supporter of the quest to Thrive with MND even when Locked-In. I left the meeting convinced that we now have TWO major hurdles to overcome – and I’d only been focused on one. Firstly (the one I knew), hardly anyone associated with MND knows anything about cutting-edge Hi-Tech and its potential TODAY to transform the lives of #plwMND. Secondly, to make the goal of #THRIVINGwithMND available to EVERYONE who wants it, we MUST confront the postcode Russian Roulette that randomly – if we happen to live in the wrong place – fires a Death Sentence at us by refusing sufficient Vent support (especially a tracheostomy) EVEN WHEN WE WANT IT! I’ve now heard far too many first-hand accounts of individuals CHOOSING the option to Thrive long-term – but not even being supported to Stay Alive. This will not stand. I feel a battle coming on…

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