I’m sorry; I know it has been a while since I last updated this blog. In reality, there isn’t much to mention. Mum’s MND seems to have plateaued for a while. Although she’s started taking supplements through her PEG rather than swallowing them, there isn’t much more to report.
It’s a relief to have a bit of a breather for a while. We’re all still anxious about the future – I doubt that will ever go away. We don’t know when or how quickly Mum will progress, but for now, all seems well.
She is coming to visit me soon, which I am so excited about. When I moved to the East End, she couldn’t wait to come down and see my house. She’d looked it up on Google Maps – ‘It’s just like in Eastenders!’ Except without the explosions.
But there never seemed to be the right time, and then we got this diagnosis. Five months on, I think we’re all still coming to terms with what it means.
I moved out of the East End last month and, sadly, Mum never did get to come down and see it. She’ll have to make do with Kent instead.
She’s coming down because the MND Association have invited us to their Parliamentary reception in October, after all the press coverage her wedding achieved.
We are really looking forward to her five days in London, which will culminate in the reception. We have learnt to plan ahead with our trips, to avoid some of the disappointments we had in June. So far, we’re going on the London Eye, to Madame Tussauds, to the Natural History Museum and the major event … meeting my partner’s parents! *insert shocked/scared face emoji*
Her final day will be spent in Westminster, doing something which makes her happier than I ever realised it would – raising awareness of the condition that lives with her.
Mum has never been bothered about politics, but there is so much more our government could do to make lives easier for people with MND. We’ll be discussing some of our problems with PIP, and the additional £12,000 MND costs ever year before the loss of wages. It will be more than that too. We’re not going cap in hand; we want them to understand.
I’ll be talking to them about the everyday challenges. Being told you can’t get on a bus because you’re in a wheelchair. Being unable to tell someone what you need. Being overlooked or ignored, as people address your carer instead of you.
Reassessments, which force you to worry even more about money as well as having to face the fact that there is no hope of improving. The emotional burden these put people through is unfair.
I hope to talk about the MND Charter, and the role MPs can have in persuading councils to adopt it.
And the one thing I’ll keep banging on about? My mum. I’m hoping she’ll behave herself – no wolf whistling at MPs, mother! I’ll be talking about her, about our family, about how our lives have changed
Except, I won’t be talking about any of this without your help. MPs are far more likely to respond to their own constituents, so please send your MP an invite to the reception. All you have to do is submit your name, email address and post code – this clever form will do all the rest for you.
Of course, I’ll let you know how the reception goes. And the Big Meet. Not nervous at all…….