03/09/2023 - 'The week when I did too much' by David

After my harrowing last week, I was determined to enjoy myself but I think I over did it!

Two days after Southampton parkrun, Alice and I cycled into the New Forest, then two days after that I spent a day putting my beloved Zippy the 2CV back together after it's visit to the car hospital for some welding. Big thank you to my friend Adrian who gave up a huge amount of his time to come over from the island to help and Craig who came round during his working day to assist with some heavy lifting. We're lucky to have such generous friends. 

The next day I couldn't move a muscle and it actually hurt to bend down to sit on the toilet! Consequently, I was forced to sit on my bot-bot for two days, and it's certainly been a hard lesson in learning my new limitations but I haven't been idle. 

Alice and I have started this blog to document my motor neurone story called MND Can Get In The Sea!  Well, you know all about it as you're reading it right now! It's been a very cathartic for us to be able to tell you what's going on and what we're up to now. And we will use this to document all the good stuff as well as the bad stuff. 

In just a few days it has had nearly 4000 views from 34 countries and hopefully it will inform or bring comfort to fellow sufferers and their families going through this horrible journey. 

We have also set up some fundraising events and a Just Giving page to raise money for the Motor Neurone Disease Association who focus on providing access to care and campaigning for those living with or affected by Motor Neurone Disease.  In fact, they will be soon funding my voice banking including lending me a laptop and headset which we're very grateful for.

Thank you to Andy Harrison, Rich Jeffery, Craig, Anna Foster, Belinda Dyer, Glen Kirkup, Charlotte Rothwell, Deborah Sier and Darren Smith-Galer who have all donated to our page so far. 

The first event took place on Saturday 

when I did a DJ set at Sound & Grounds in Cowes. The place was packed with my family, friends and even a few people that don't know me - unbelievably, people like that still exist!

We sold MNDA wristbands and badges and raised nearly £400! It was great to see so many of my friends that I hadn't seen for years. More to follow on this event!

Prior to the DJ set, a lovely punnet of us vegan runners from Hampshire travelled over to run Medina parkrun in Newport and again, I met some running friends that I hadn't seen for a while including an old primary school friend who not only stayed with me all the way around, but actually pushed me up the hills! Thank you Rob!

Our vegan runner friends got up at silly o'clock for the ferry and then came to the DJ set to support me. They're a wonderful bunch of humans. Or perhaps they were just tempted by the breakfast in Peach!

Last week, we also had a visit from a local MND volunteer called Suzy, who has been involved for ten years since her uncle died from MND - what a lovely thing to do!  She gives up her own time to visit MND sufferers all over Southampton and the world is such a better place with people like Suzy in it, and I thank her and every one of the volunteers. 

She reassured us that we were not alone and that there is help available and people to reach out to. She also told us of little practical aids that I will need as I get weaker like toothpaste dispensers, jar openers and bum wipers! 

While we are talking dirty, I was pleasantly surprised to learn that although I won't be able to physically wipe my own bum in the later stages, I will keep control of my bowels, which is a relief as I was fully expecting to have to wear a nappy. 

Enough of toilet talk, let's get back to living our beautiful lives. The summer is nearly over so if you see the sun shining, get out there and let it warm your face because we will all long for some sunshine during the long winter months x