I was spurred on last week to write about Mum’s visit to London by a secret … she was coming again this week, for a rather special engagement.
On Thursday, Mum and I went to an event in London that was attended by, among others, the Princess Royal and Jeremy Vine.
The reception was held to promote understanding of the communication difficulties 80% of people with MND face, and the vital importance of communication aids and voice banking.
Slurred speech was the first symptom we noticed with Mum, who has now almost entirely lost her ability to speak. She communicates in a number of different ways, including writing in a notebook and using sign language. Mainly, however, she used a free app, amplified through the use of a Bluetooth speaker. We could have done with turning up the volume, to be honest, but there were lots of discussions about the impact this can have in ensuring people with MND are heard.
We were introduced to Princess Anne, and spoke about Mum’s wedding, her efforts to raise awareness, and our future hopes for improving Mum’s ability to communicate. The diagnosis came too late to bank Mum’s voice, but my sister and I are looking into banking our voices, in the hope to synthesise them together, creating a unique, Yorkshire voice for my proudly Yorkshire mother.
The Princess Royal listening attentively to what Mum saying hello
We spoke to so many people who are living with, caring for or once cared for people with MND. We met the incredibly inspirational Jason Liverside, who abseiled down the Humber Bridge last year, and we spoke at length with a couple from Oxfordshire who are coming to terms with the diagnosis last summer. This was their first event of this scale, and they did much better than Mum at her first event – she couldn’t control her emotional lability and sobbed the entire time.
It was strange to have people recognise us, both from the parliamentary reception, and from our blogs. I met David Setters, one of the most ardent campaigners I have ever known, who came over and said ‘Ah, you’re Victoria! And you must be Victoria’s Mum!’ We are indeed.
After the speeches, Mum and I went to briefly speak to Sarah Ezekiel, who had just been interviewed by Jeremy Vine. Sarah uses eye gaze technology to communicate, and to create incredible artwork. The image below is Teardrops, which was a birthday gift I received from my partner’s parents. I love it. There have been so many tears since Mum was diagnosed, but there has also been so much colour, as we make every day count. It hangs in my bedroom.
Teardrops by Sarah Ezekiel
Check out more of her amazing artwork here
Mum was persistent in her nagging to be introduced to Jeremy Vine, and he came over just before he left, much to her excitement. They chatted for a while, and he even gave us some useful advice. We’re going to start looking for a phone with a g-board, which types words as your finger glides over the keyboard. This will help Mum communicate quicker – a real problem we faced in large groups, as we were on Thursday. The conversation naturally moves on, before Mum has a chance to say what she’d like to say.
Mum, chilling with celebs
Mum left London in the evening, and was very happy. I’m thrilled that she can have opportunities like this, to meet people (not just famous ones!) and talk about her condition in a supporting, understanding environment. It makes me happy that she has things to look forward to, and I know campaigning and raising awareness gives her a sense of purpose.
Thank you to the MNDA for inviting us. It really was a wonderful afternoon.
Thank you to Hugh Thompson for the photographs of us with the Princess Royal.