Here we are at the Parliamentary Reception in June, with other members of MNDA branches.
Doesn't Roch look dashing?
On to more recent news:
The wheelchair arrived on Monday. I think Tom has got the hang of it now...
We went to King's College Hospital last Thursday and saw Professor Shaw. For me it is always such a positive experience, and I know that sounds odd. He answered all our questions just as Professor Al-Chalabi had - with clarity and with respect and he clearly knows what he's talking about. He said that 50% of patients diagnosed with MND on the same day as Roch were dead now. 'You're an Outlier,' he said. So yes it's a slow progression. Roch said that sometimes he wished it would just get on with it and he could get it all over with. Professor Shaw didn't blink an eye, he simply said he'd specialised in MND for 18, no, 20 years and no patient of his with the rapid form had ever said they were glad they had it. That helped Roch. I refer you to Chris Woodhead's remarks as reported in a previous post.
Roch's been a bit down lately - I think the shoulder thing has been at least partly responsible. Professor Shaw confirmed it for us - now pause for readjustment as we are reminded again of the power of the monkey. Monkey see, monkey do. And so we go on...
Easyjet have replied to my initial complaint about our experience at Marco Polo airport when our flight home from Venice was cancelled. And yes you've guessed it - pretty standard, 'please submit receipts for expenses incurred etc.,' Round One.
Have I told you the story? Basically, the flight was cancelled and at that point it was all able-bodied men for themselves. All 'special assistance' flew out the window. No priority was given for disabled people, and I won't even go into how unhelpful the airport staff were. No Easyjet staff available. That's a budget airline for ya. Round Two to begin. I will report on progress.
Venice, we miss you...Dublin next and I am really looking forward to going home. As my mother often says, 'A girl's best friend is her mum...'