01/10/2023 - 'What goes down must come up' by David

It's been a mixed bag of a week - although some bad, I'm pleased to say it's mostly good!

The first news to share is that after our excitement of the house purchase, I'm sad to report this fell through. This was desperately disappointing for both of us as it seemed to fit the bill on all our requirements. Alice had spent a lot of time and effort finding the house and then getting the funds and paperwork sorted and took the news very hard and is still feeling fragile. Although we're sure we can find somewhere else, we're very aware of the time pressures involved. We expected house hunting to be hard but it's even harder when you throw MND into the mix. 

Our fundraising has now reached a massive £3500. We have approximately half on the Justgiving and half in cash donations. We have agreed anything online will go to the central MNDA charity with cash donations being split equally between the local Southampton and Isle of Wight branches. Having used the MNDA resources recently, we know how much good this money will do. 

This amazing total includes a £500 donation from my colleagues at the the hospital football team. I started the team 10 years ago when I was in neuro theatres and it has grown to well over 100 in number. I attended the first of 3 football reunions that have been organised in my honour on Monday and we went out for an Indian at a restaurant owned by one of our orthopaedic consultant surgeons. We are all ages, abilities and sexes and we play once a week, outside in all weathers on an an artificial pitch and over the years we have shared many laughs, great goals and total miss kicks! We've played other hospitals, an ex Saints team and have played on Saint's St Mary's Stadium and on Eastleigh's pitch. Up until my retirement from football earlier this year, I had really looked forward to our Monday night kickabouts. We had a great meal and a couple of beers and I am very grateful to Adel and Rich, who organised the reunion.

The first week of our Great Office Bake Off was cupcakes and muffins was on Tuesday and I made courgette, lime and chocolate chip cupcakes. They were very tasty but average in appearance and I didn't win. One of my managers at work, Kerry, won with her clementine cupcakes but they weren't vegan so I couldn't taste one. My line manager Rachel, made vegan carrot and sultana cupcakes and I devoured two of those beauties! £200 was raised for the MNDA which is incredible and there are 3 more weeks to go - yum yum!

On Wednesday, it was my daughter, Rachel's 25th birthday, so I took the opportunity to take Zippy back to the island for a few days to see friends and family and spent three nights with my mum. It was absolutely lovely driving around the old routes I used to drive or cycle on and it felt great driving Zippy again. I dropped of my single speed bike for Rachel's husband to be Max and I'm glad it is staying in the family. I drove Rachel and mum out to Freshwater for lunch, then we stopped at Compton for an ice cream. I have had the car for 16 years and somehow, mum had never been in it! She said it was a comfy ride, although the 600cc engine was a little loud. We laughed and laughed on our little trip out and Rachel had a lovely birthday. Staying with my mum was relaxing and mutually beneficial. She lives alone and likes to know there is someone else in the flat when she goes to bed and wakes up, and I get to relive my childhood as she always has that green marmalade that was popular in the 70’s and I have a hot water bottle too. We look at old photos and talk about dad a lot and we always have a sherry or ginger wine every evening. How very civilised!

The next day, I drove out to Lake to see Adrian and Jan at their lovely cottage. Adrian has been my car mechanic for the last 10 years and has done an amazing job keeping Zippy active. We sat out in their lovely garden as the birds and the insects did the things they like to do, in and around the abundant foliage. We laughed, sang and reminisced about old times and as we said our goodbyes, he tinkered with the car for maybe the last time - who knows? I drove off with everyone smiling and waving, thinking about sunny, summer, better days.

My good friend Andy has turned his summer house into a pub, which includes a juke box, pinball machine, a fireplace and all the usual paraphernalia on the walls that you expect in a country pub. I popped in on Thursday night for a drink at the Legless Arms! The materials for the bar, the seats, the windows and the fire surround are recycled from tables, stairs, railway sleepers and pallets and the bar has pumps, drip trays, mats and towels donated by pub owners and friends. I sat at the bar, on a reclaimed stool, and he pulled me a glass of home brew. We listened to our juke box selections, laughed about good times and discussed the bad times ahead. He's always wanted his own pub and he was enjoying being the barman -cheers Andy! Before we left I got the 3rd high score on the Six Million Dollar Man pinball machine! If only they could rebuild me.

On Friday night, I played a gig with my great friends Bobby I Can Fly at Cowes Football Club, the second of our MNDA fundraising events on our Just Giving page. We were a group in the 80's and reformed a few years ago and we are very lucky to have a good following on the island. It was a sell-out and we played a lovely, loud, sweaty set to a room full of beautiful people and raised £1753!

The week ended as usual, with a 5k parkrun and this week, it was Medina, Isle of Wight and I had the pleasure of running it with not only my hand holder, wife and bodaciously beautiful Alice, but also with my old school chum, Kev Bennett, who has only just taken up running. We reminisced over old stories and laughed as we ran and it was a pleasure to see him again. 

This MND thing is really confusing. One day last week I was walking home and my legs felt weak and I thought I would fall to the floor. Then a few hours later, after a lie down, I'm walking absolutely fine, on the way to the curry house.

Unfortunately though, it is also very upsetting. I made my daughter a home-made birthday card, as I have done for many years and after all the felt tip work on the front, I could feel weakness in my hands and I was really struggling to write my message to her inside. I really wanted this message to look nice as this might be the last birthday card I am physically able to write to her. As I wrote her name, the 'e' in Rachel looked more like an 'a' and it really upset me. Damn this stupid disease. 

Being diagnosed however, with a terminal illness has given me the opportunity to think about what is important, what I have, what I am, and everything and everyone around me. With all this in mind, I am determined to experience as much as I can and hug and kiss as many dear friends as I can, so look out because I have lots of love to give x