June

1st June 2018

Here’s a reply to my inquiry about being denied Travel Insurance, from John Glen MP, Secretary to the Treasury and the Government Minister responsible for the industry. In consultation with MND Association I asked MP Kevin Fosterwhy #plwMND like me get turned down out of hand, apparently simply because we have #MNDhttp://www.scott-morgan.com/…/name-and-sha…/lloyds-bank-axa/ Evidently the Financial Conduct Authority (FCA) are currently looking at how Insurers work. But OUR problem is that regarding MND the Insurers seem to be out of date with the Science – so it’s another huge cost on us!

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4th June 2018

If you’ve ever wondered if Platform Lifts are part of my ‘Hi-Tech to THRIVE with #MND’ the answer (now I’ve examine one) is: YES! So far, it’s taken three guys five days solid work to install. Before everything gets enclosed, here are the innards you don’t normally get to see…

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5th June 2018

One of the huge benefits of #MND is that it’s the perfect excuse to play with LOTS of new toys! I spent the morning with Simon at GM Coachwork exploring how to turn an innocent-looking vehicle into a #wheelchair accessible mobile HQ/ICU. Installing loads of Hi-Tech, no problem. Finding a WAV that doesn’t look like the cross between a box on wheels and a glorified hearse, now THAT’S a challenge…

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8th June 2018

TRUE COST OF MY NEW PLATFORM LIFT
Lift mechanism and controls – £25,000
Construction of lift shaft – £10,000
Hard floor instead of carpet – £5,000
Redecoration of affected rooms – £5,000
Being able to carry on living next door to my family – PRICELESS

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11th June 2018

#MND can be REALLY FUN! Hugely-helpful David Denning at Exeter Disability Centre let me play with a bevy of hi-tech electric wheelchairs while GM Coachwork drove several miles to join the party and bring a WAV conversion that I like – then let me play on their equally-hi-tech side-entrance lift. I was in my element! Talk about BOYS WITH THEIR TOYS!!!

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19th June 2018

This is my HOMAGE TO STEPHEN HAWKING at Exeter Disability Centre – playing around in a Permobil F3. His chair. [Not his ACTUAL chair of course, but the same.] I met him 10 years ago. How did he live with #MND so long? Well, he explained, he had a TRACHEOSTOMY back in 1985. That helped!

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20th June 2018

Thanks to my #MND my arms can’t turn me over in bed any more. What to do? Carers turning me every two hours?? Please! ME?!? The solution is Hi-Tech, obviously!! With the help of #NHS OT I’ve been experimenting with the marvellous TOTO-TURNER. Every 30 mins it slowly pivots my mattress through 30 degrees. I never have to move all night! Bliss!!

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21st June 2018

THE BIG UNANSWERED QUESTION for #MND: “If your hands don’t work so you can’t put in earplugs, how can you sleep well if your husband snores at night?” Not that mine does, he insists. Answer: Hi-Tech noise-cancelling earphones! I can’t turn over ANYWAY, so they stay on perfectly!!

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25th June 2018

IT’S THE FINAL COUNTDOWN to my trailblazing Triple-Ostomy confirmed by the wonderful #NHS as set for 10th July. Never done before for #plwMND in UK or USA. It will be LIBERATING! No more worries over swallowing or not being able to use a disabled toilet – even if I could reach one. LIFE CHANGING!!!

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30th June 2018

My fabulous anaesthetist explained #MND makes some of her normal arsenal risky. In the extreme I may be unable to come off ventilation. Was I OK with that risk? OF COURSE – I plan to be Locked-In for far longer than it takes to get there, so let’s make that END STATE as good as possible!