10/12/2023 - 'Things to do before I die' by David

Samuel Johnson, arguably the most distinguished man of letters in English history, once said "Depend on it, Sir, when a man knows he is to be hanged in a fortnight, it concentrates his mind wonderfully". 

While sifting through my notebooks, I found an old list of Things To Do Before I Die which must have been written sometime in the early 2000's.

Some I have since ticked off things like watching a stage of the Tour De France, go on a cruise, and run a marathon. Others did not and sadly, will not happen, like visiting a south american country, watching an overseas test match or to see a fish riding a bicycle. 

Of course, the most important thing on the list, to walk my daughters down the aisle, is going to come half true. My daughter Rachel, is getting married next April and I'm determined to be able to walk arm in arm with her and pass her into the safe hands of Max. If and when Anna gets married, I will be gone but I will be there in heart and spirit, I promise Anna x

Since I was diagnosed in July with MND, I have decided to revise my list to more manageable experiences that Alice and I can do together and don't involve much walking. They are all pretty much things that I had envisaged doing in my old age, but as I'm going to be denied that stage of my life, I need to bring them forward.

A cruise, a coach trip, a train trip, and volunteering at an animal sanctuary are the first few activities. Visiting a few museums would also be nice. The Southampton City art gallery to see L.S. Lowry's original painting of the city's floating bridge, the Hovercraft museum in Lee On Solent, and the Portsmouth dockyard to see the HMS Victory and the Mary Rose. To see shows at the Royal Albert Hall and Southsea's King's Theatre are also on my list. Watching my football teams Wycombe, Derby, Forest Green, Sholing, Cowes and Osborne Coburg one last time would also bring me great pleasure. The last thing on my list is to stay at the Grand Harbour hotel in Southampton. The building with a large glass triangular frontage that you see on the right as you leave the city via Red Funnel, has always intrigued me. I am pleased to say that Alice's parents have gifted us a voucher to stay there so we will be going in the new year.

Another thing I need to do is to transfer all my family photos from my computer onto memory sticks for my daughters. 

I have printed photographs of me as a child and an adult that I can pass on to my daughters but with the advent of digital cameras, followed by cameras on mobile phones, all my photos of the girls when they were children are on files on my computer.  

You may read my revised list and think that it's not very exciting? Well, I am quite content with my life's experiences and I just want to spend most of my remaining time with family and friends from now on. I'm still looking for that fish though! 

Talking about museums, we walked Newbury parkrun Saturday followed by going to the Greenham Common visitor centre and control tower on Saturday. It was an early start but Kevin the carrot kept us company on the ride.

We chose to walk as Alice had a marathon to run that evening but we had plenty of company at the back and it was an enjoyable, if not puddly course round the common. 

This Berkshire location was an American Air base from 1943 to 1993 and was used during the second World War and the Cold War, and was later used as a base for nuclear weapons. It's also known for the women's peace camp, when women protesting against the housing of american nuclear missiles on British soil, camped and kept vigil for 19 years at the perimeter fence. The runway has gone and the common has now been left to nature, but some buildings remain, and we went up the control tower and were given a talk by the volunteers. Before leaving, I of course took the opportunity to pose for some comedy photos. 

I have been invited back by Vectis Radio to give an update on my MND journey and I'm looking forward to continue to raise the profile of the disease and the importance of finding a cure. I'm on from 10am GMT until midday on Tuesday and it's available worldwide via the Internet. 

My symptoms continue to impact on my life and this week, I have realised that my handwriting is deteriorating as my hands get weaker. I have always been a writer of notes and lists and I want to leave a letter to my loved ones, but my hands won't let the pen go where I want it to and it looks untidy and I make many mistakes. This is frustrating and upsetting. 

We have started our Christmas jigsaw, which is traditionally accompanied by my Christmas vinyl collection, which is eclectic and weird, but fun. Christmas albums by Johnny Mathis, Andy Williams, and the Partridge family, are joined by country and tijuana brass compilations. So far, I've had no problems with my hands putting the pieces in, if only I could find the right places for them! 

We were delighted to receive the local edition of the MNDA newsletter this week and see ourselves featured on the front cover! The 'Bakers big fundraiser' write up was featured in a double page spread and we are very proud of the money we've raised to help people just like us. Not quite the total that Kevin Sinfield has made this week mind you! His efforts to raise awareness of MND have been nothing short of superhuman and we're grateful to have him fighting our corner. 

Alice and I had a lovely evening on Tuesday when we met up with my daughter Rachel and her betrothed Max at the Christmas market in Southampton and as we drank, mulled cider and beer, we talked excitedly about Christmas, their move into their first house together and their wedding next year. 

Unfortunately, the next day we received terrible news. We had a bereavement in the family. My oldest nephew spent just 29 years on this earth. He was a gentle soul, a talented swimmer and musician, and was very much loved by all that were privileged to know him. We are a big and close family so we will look after each other but my brother is obviously devastated as we all are. Sweet dreams Frankie, fly high x