January

8th January 2019

I’M BACK IN A RECORDING STUDIO to record 5,000 phrases for brilliant CereProc to research building an extra-high-quality synthesizer of my voice like those used on SatNavs. I’ve only got 43% lung capacity left now, but thanks to amazing Mouthpiece Ventilation I can still inflate my lungs to talk as clearly and for as long as I ever could on one breath!

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13th January 2019

TRULY EXCELLENT LETTER FROM MY PARLIAMENTARY CHAMPION Kevin Foster MP. Each of us with #MND deserves the SAME Right to Thrive – including access to Cough Assist and Tracheostomy if that’s what we want. Currently some are told NO just because of where they live!! This will not stand.

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23rd January 2019

FASCINATING MEETING WITH THE DIRECTOR of the South West Neuromuscular Delivery Network, Dr Andria Merrison, and colleagues Helen Madden and Nicola Grose. We found we were all passionate about ensuring EQUALITY of access to care – and explored in detail what drives the current unfair #NHS postcode lottery in Respiratory Care for #plwMND. Turns out #MND is a Cinderella Disease, so in at least some cases local funding groups simply don’t sufficiently understand the implications of their decision not to fund a Tracheostomy, or sometimes even just Cough Assist! Left me thinking: It’s high time for Cinderella to unexpectedly glide down those ballroom steps and start dancing in the spotlight!!!

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30th January 2019

LIFECHANGING DISCUSSION WITH MY #NHS ENT SURGEON – agreed that when time is right, instead of a standard tracheostomy, we’ll experiment with major replumbing of my throat to completely separate my trachea (windpipe) from my gullet (oesophagus). It will be a UK first for #MND. Basically, we’ll remove my larynx (voicebox) as is sometimes done for throat cancer (a Full Laryngectomy) then correct the design fault that has food and air sharing the same pipework! That will remove ANY risk of aspiration pneumonia – the main killer for #plwMND with a conventional trache. Which is good, because I intend to be around a long time…