31/12/2023 - '2023' by David

The neuro consultant in Oxford told me in November that I should enjoy this Christmas as although it probably wouldn't be my last, it would be the last as a mobile and healthy person. So, although I was determined to do just that, I also didn't want to do anything different to our usual Christmas routine.

I have relaxed with a coffee, a limoncello (homemade by my daughter Rachel and hubby to be Max), or a vegan Baileys, and I've read an Agatha Christie (Poirot's Christmas), and Michael Portillo's Great British Railway Journeys, in search of our next train trip!


As our two families live either side of a stretch of water, we can't really do a big meet up but we always make sure we all see each other. 

Christmas Eve was spent with Alice's family, eating, drinking and playing games, before we came home to finish our Christmas jigsaw before father Christmas started his rounds.

We rose early on Christmas Day to take part in our first festive parkrun, and we joined 19 other Vegan Runners at Southampton in a field of nearly 1000! Alice and I ran in Santa suits, which on an unseasonably mild day was not the best idea! Lots of our friends gave up their opportunity to run as fast as they could, to join us at the back, and it epitomised just how special they are, and how much they mean to us. We laughed and sang and posed and said "vegan cheese" for the obligatory VR photo before returning home for presents with Alice's family.



I prepared and cooked the Christmas dinner for just the two of us, which we ate with some lovely home pressed cider, courtesy of my friend Rachel. My silly hands made chopping and peeling a little problematic but I was determined to complete it. We relaxed in front of the telly and watched Mog's Christmas, the Wizard Of Oz (Alice fell asleep) and the new Dr Who (Alice looked bemused) and we had a lovely relaxing time in each other's company. For the first time, and because of the rubbish year we've had, Alice and I didn't buy each other presents this year. The only thing we need from now on is each other. Although we did get a cool jigsaw from Guy!


On Boxing day, we travelled to the island to see my daughters and the rest of my family and we all converged at mum's lovely top floor flat overlooking Cowes town. We talked excitedly about new houses, picking up and rehoming a rescue cat, and we exchanged lovely presents. We bought the girls record players and gave them a big handful of records from my collection to get them started. 

The 27th was my stepson Fin's 15th birthday and Alice and Matthew took him to town for the usual tradition of a visit to the Lego shop followed by pancakes - oh to be 15 again!

Saturday is parkrun day of course and our meet up was at Netley, in the grounds of the victorian hospital and as it was a hilly course, I voluntered as a marshall, encouraging all runners and walkers alike.



So what of 2023? It started so well for me. Alice, I and both my daughters were happy in work and love and my mum was in good health and amazing spirit after losing the love of her life just months before. 

In January, I was in training for a marathon that my body was nowhere near ready for, due to the cramps and aches in my legs that I'd had for the last three years, that I thought were long covid related. I fell, cut my face and was hospitalised as a possible cardiac problem, which was worrying, but as I felt absolutely fine, and it made no sense. Once my heart was checked and cleared, I was discharged and I went back to work, and back to the lovely life I had. 

When I noticed a slight foot drop and fasciculations in March, everything changed.  

I saw a neurologist, hoping to eliminate anything brain related but unfortunately after an MRI and EMG, I was diagnosed with spinal onset Amyotrophic Lateral Sclerosis (Motor Neurone Disease) in July and the last stage of my life began.

In the months since that day, Alice and I have come to terms with, and planned for our future, started this blog (which has had 15,500 reads), raised lots of money and continued to live our best lives together, and with our loved ones.

Thank you to everyone that has donated to our JustGiving page. We've raised a huge amount of money but will soon be handing it over to focus more on our house move and all the other challenges 2024 will bring. I am very grateful that I wasn't diagnosed with MND prior to Doddie Weir and Rob Burrow being diagnosed. The publicity and amazing charity work that Kevin Sinfield and many others have done in their names has raised vital funds, which I have benefitted from already, and the awareness of this disease is regularly on BBC news and in people's minds, and the millions of pounds raised so far will surely find a cure or at least a drug to slow the symptoms significantly. 

This year has been the worst year of my life quite obviously. I have had to give up some things that I loved like cycling, football and things like cooking, running and playing music will go the same way too, but as I have documented many times in the months since my diagnosis, I really am happy, content, and enjoying life. 

I have developed a zen like appreciation of everything around me, which apparently is quite annoying to friends around me as they don't feel it. I see beauty in things that previously were ordinary and mundane to me. I don't know why I feel so elated about trees, full moons, rainshowers, and strangely, tv shows from my childhood, but I guess it's because I see the world through different eyes since I've been told my time on earth is now limited. 

I am planning to visit city's, museums, sporting arenas, and concert halls while my legs are good, and then have plans to visit spas, cinemas, theatres, and go on train and coach trips, and a cruise when my legs are less able. Hopefully, that will take me up until this time next year, and we will all be a year older, wiser and hopefully just a little more beautiful, inside and out x 

PS: 3 people have signed up to walk 15,000 steps every day in January on behalf of me and for the MNDA. Thank you Anna, Andy and Ruth 🧡💙

And it's not too late to sign up yourself! 

https://rb.gy/ijeuex

Comments

  1. AnonymousDecember 31, 2023 at 1:58 PM

    Dave your an absolute inspiration to all - Cheers Chalky

    ReplyDelete

Post a Comment

Popular posts from this blog

11/02/2024 - 'The highest of highs and the lowest of lows' by Alice

Image
Strap in for a rollercoaster - it's been a big, emotional and busy week.  'Monday Monday... so good to me'. Well, not really. I'm doing the blog this week and that's because David just couldn't face it and needs a week off. I'm sure our regular readers usually feel reassured that despite his disease, he's upbeat and positive but this week, started with him feeling down (and that's OK!). So was there a trigger to this low mood? Probably yes. And that was our check up with his neurologist at the hospital. We get a 30 minute appointment and as usual, we were joined by Clare, the MND care co-ordinator for the area. The consultant starts with the same question he asks every time - 'what's changed?' and we have deteriorarion to report. David's hands are becoming weaker and every day tasks are becoming harder (if not impossible). Not only that, his arms are failing him so his overall strength is weakening. He had been packing up his percus
Read more

18/02/2024 - 'My running days are finally over' by David

Image
In a week where both Alice and I really wanted to rest and relax, we unfortunately did neither. Alice is suffering from a bad back, and I was still recovering from my running and musical escapades last weekend, so the thought of sorting, boxing, and transporting to the new house wasn't something to look forward to. With the help of family, including Fin, who used all his lego building experience to help assemble units and desks, we have made a good start though. Unfortunately, my leg strength has deteriorated and on Monday I walked back from the new house to our old house on my own as Alice and Fin were busy assembling furniture and after only a few minutes of walking, I felt unstable on my feet, and I was lifting my left foot in a strange manner as I walked. Admittedly, I didn’t have my stick, or my shopping trolley, or the hand of a good woman to hold onto to steady me, but it was very disappointing and left me in a low mood. Amidst all the emotions and household possessions arou
Read more

04/02/2024 - 'MND takes everything...' by David

Image
It's 12 months since my 'Theory Of Everything' moment. Anyone who has seen the film with Eddie Redmayne playing the part of Stephen Hawking, will remember the moment when he falls to the ground with a thud and his world changes forever. Unlike a 120 minute film, my story is thankfully told in real time and in the last year, I have come to terms with my condition and, in fact, embraced life ever since. It's impossible to determine the actual date of my first symptoms as Alice had noticed twitches in my legs, and I had been getting leg cramps for over a year, but my fall while out running last January, training for the Brighton marathon was definitely a turning point, and from that moment on, we both realised that another marathon was beyond my capabilities, and that I should get my body seen to by professionals. We both hoped it was leg related, but unfortunately, as the tests, went on, it was becoming obvious, that it was neurological, and I was diagnosed within months.
Read more