15/10/2022 - 'Week 13, lucky 13' by David

13 weeks since my diagnosis, and a week which included Friday the 13th and they say that the number 13 is unlucky for some. Well, I'm not superstitious, and am happy to walk under a ladder, but my week didn't start off very well and Alice and I were getting bogged down in paperwork and the emotional baggage of MND.

My walk to and from work was slow and my legs felt weak and every day, I was hoping they would feel a little bit stronger, to no avail and we had our first appointment with my consultant and specialist nurse since the bad news 13 weeks ago. They were both happy that I am still running once a week, and that I am getting all the help and assistance available in the community. He wouldn't, however, sign my form saying I have less than 12 months to live, which would have enabled me to cash in both of my private pensions. I guess its good news as he must think I'm doing well and although I can't get at my money, I'm going to hang around for a while longer. Strap in for the ride folks!

Tuesday evening, we attended an online support group for people living with MND and their families / carers. They move to zoom calls in the darker months as most people with MND are not so keen on going out in the cold which is a shame as we only got to one face to face meeting. It's understandable though and it was nice to see some familiar faces on the screen. They were due to have a speaker from wheelchair services but unfortunately, they dropped out at the last minute so it was just friendly chitchat this week. Speaking of wheelchairs, my OT called and offered to drop one off to the house this week but we declined - partly because I don't yet need it and partly as it will take up room we don't have! That can wait for now. 

We were also invited to visit the Countess Mountbatten Hospice in Southampton this week, and we took them up on the offer. We met a lovely physio called Krissy, who showed us around and explained that the facility was not only for end of life care, but also for rehab, physio, social groups, drop ins and appointments, and we were impressed with the feel of the place, the friendliness of the staff and the volunteers and the coffee and the vegan chilli. Krissy was also impressed with how much planning we had already done and our positive but realistic attitude towards my illness which was nice to hear.  Sadly though, there were no vegan biscuits or cake - 7/10, must try harder.

The week did start to get a lot better though as it went on, and my life was again full of lovely people and exciting events!

Alice and I met my daughter Rachel and husband to be Max in town, and we tried out the new Wagamama menu - the vegan corn dogs and ramen were lush, and it was great to see them and hear them discussing their wedding plans.

Then I went over to the island to spend a couple of nights with my dear mum and we had a pizza and cards night with my nephews, neices and boyfriends. Mum won Chase The Ace and I won at Queens. We play for treats instead of money so I won an armful of chocolates, most of which I couldn't eat.

On Saturday, I ran Medina parkrun with my friends Rob, Kev, Debbie and Tracey, and they all wore Run For Dave, October 2023 ribbons. As I didn't have Alice's hand to hold, I ran with poles for the first time. They were definitely a help as it gave me some confidence as I ran. Both Rob and I did take tumbles but neither were a real problem. Rob was looking after my feet and neglected his own and performed a perfect forward roll for us all and came up smiling. Then just as we were ribbing him for his fall, I bent down to thank a little girl, who was holding a sign which read "Touch this sign for extra power!" As I did, my pole got stuck between my legs and I dropped to my knees. Rob pulled me up, and we ran off laughing like children! parkrun is such an inclusive and friendly event and every week I get an ovation of applause as I cross the finish line, which is truly humbling. 

In the afternoon, I met up with fellow ex footballers as we watched the current crop of youngsters kicking a bag of wind around and in the evening, I attended the second of the three football reunions that have been arranged for me. This time it was Gurnard Youth, which was started by my friend Steve Dines, for us kids in Gurnard, and the club is still going strong and thriving, nearly 50 years later. We chatted and reminisced about good old times and laughed about our haircuts and the clobber that we wore back in the 70's and 80's. 

You may have noticed, that my life is dominated by football, well, I make no apology as my dear dad instilled my love of the game and like any sport, the thrill and hope of victory is what keeps bringing you back, even if you got stuffed 5-0 the week before. I always say that it is football rather than love or money that makes the world turn! 

My week finished, on a beautifully sunny Sunday morning looking out on the town I grew up in the company of my lovely mum. As we chatted after breakfast (green marmalade on toast), we listened to the new Ian Mcnabb album. He was lead singer of 80’s band The Icicle Works that I devoured with a passion in my youth. He still performs and releases solo work and his voice is as good as ever. My everlasting friend and best man Mark, went to see him last week and he bought me a cd and got Ian to sign it for me!

Mum said it had a nice beat to it, a very typical mum type comment. Thanks mum, thanks Mark and thanks Ian x

So that's my week. It started badly, but got much, much better and I am forever thankful for my lovely family and friends.

13 is also a Baker’s dozen and as I'm an optimist, a Baker and also because Alice and I got married on the 13th, I think and feel that 13 is my lucky number. 

Stay beautiful and say hello to the sun x