23/02/2025 - 'Sometimes life goes 0-100' by David

It finally seems like something is happening with our house adaptions which will allow me to sleep downstairs with an en suite wetroom. I'm struggling to get up and down the stairs now so it will be very welcome. The plans have been in the hands of the architect for over two months now, but I met Steve from the council, who are funding the work, and the architect at the house, and they both left saying the plans can now be tendered to the builder. Hallelujah!

This good news, came after a disappointing few days where I didn't leave the house for five days, I had no visitors, and the weather was drab. 

On one of these grey days day, I woke up with a headache and a stomach ache and consequently, I took a couple of Paracetamol and stayed in bed until lunchtime. After rising and finding that my arms were weak, and my legs were wobbly, I was really feeling down, and when Alice texted to ask how I was, I replied as such. By the time she came home though, I had a smile on my face, and in my heart, as I had received a lovely phone call from Anna's boyfriend Jake. He told me that although they have no immediate plans, they do plan to marry when their circumstances are right, and that they would really like me to write a speech to be read out on the day. I have actually been thinking of doing just that so I told him that it would be a pleasure. I thanked him for calling and I had tears in my eyes as we spoke, as it reminded me of the same feelings that I felt when Rachel's husband to be Max, asked me for her hand in marriage, prior to their lovely wedding last year. I'm so happy knowing that both my daughters are in very good hands, and will be well loved. Jake later messaged me to say that he had to summon up the courage to phone me, but I reassured him that I would have felt exactly the same at his age.

This marked a turning point in my mood, and the next day we were given some amazing news... I'm going to be taking part in this year's London Marathon! I have entered the ballot on many occasions, only to be disappointed every time, so when we were told that our assisted runner application this year was again unsuccessful, we volunteered to be part of the MNDA cheer squad out on the course instead and booked a London hotel. Martin, who owns Delichon, the company that manufactured our running buggy, is aware of my diagnosis, and how much taking part in the biggest marathon in the world would mean to me, took our cause to Whizz Kidz, a charity that he has run the marathon for previously, and with their help coupled with emails from Martin and Alice, the organisers of the marathon have agreed to give me a place, and also places for four people to run with me and take turns pushing me.  This was just the best news I could have received and when Alice called me to tell me the news, we were both emotional. As we get to have a team of 4 to push, we immediately selected my daughter Anna, who is already up to half marathon, our dear friend Andy who will provide the banter and of course, Martin as none of this could have happened without him. We videocalled him from the UK on a wet and windy night while he was on the beach in Antigua to formally offer a spot on #teambaker and he was happy to accept. The training starts now!

We then celebrated this news with our running friends and a bit of karaoke! We eschewed our usual song, Elton and Kiki's Don't Go Breaking My Heart, and went for Robbie and Nicole's Something Stupid, and Tonight You Belong To Me which Steve Martin and Bernadette Peters sang in Carl Reiner's film The Jerk. 

Next morning, we were up early again for more parkrun fun. We stayed local this time and our friend John had a go at pushing me. He's used to pushing buggies with kids, but not an adult. Despite this, he did really well and came in under 27 minutes. You can push me again John!

 And of course, there was breakfast with our friends to follow. 

I did a Valentine's Day DJ session with my mate Darren in front of an invited audience, and we called it The Love Alternative. 4 hours of 70’s and 80's songs with love either in the title or on a love theme.

We stayed away from the slushy stuff and played a selection of hits and misses from the decades when vinyl was king. I sat on a stool, and I had my trusty assistant, Snowy by my side, to help me and we had a great time.  I had so many friends turn up, both locally and from the island and everyone enjoyed the tunes and beer. 

I had a quick trip over to the island to see my family, and we had a drive out to visit my dad's tree, and also to see the lovely snowdrops in Newchurch cemetery.

Mum and I managed the small walk from the car park with our sticks and a hand to hold. 

We had a night at the theatre to watch the touring production of Murder On The Orient Express. Alice's parents had bought us the tickets for Christmas and we had accessible seats. You can't beat a bit of Agatha Christie at the theatre - there's always a few gun shots!

We met up with some of our running club at Bushy Park parkrun in London. It's a bit of a pilgrimage for parkrunners as that is where it all started, and always attracts the largest attendance in the UK. It was probably a bit too muddy for the buggy, but it was a nice flat course amongst beautiful surroundings, and Alice the machine pushed me to a course record time for the male wheelchair category, and it was her 200th parkrun too!

We also got to meet and have a chat with the actor John Altman, best known as Nasty Nick in Eastenders. He regularly volunteers at Bushy, and was very happy to pose for a photo, and he seems like a really nice bloke. He was telling us that he ran the London marathon twice, and regularly ran parkrun but his knees no longer allow him to at the age of 72. 

At home, I'm enjoying re-reading all my Tintin books chronologically and I'm now up to The Shooting Star, which is the 10th adventure of the 23 that Herge' completed. It's special to me because it was the first Tintin book that I bought in 1978 as a 12 year old. I bought it in Newport on the Isle of Wight in a bookshop called Colemans, which has long since gone, and I chose it purely for the cover plate of Tintin, Snowy, and an oversized mushroom! I have read it so many times over the years that most of the pages are now loose, but that sort of adds to the nostalgic emotion that I get whenever I pick it up. I paid £1.25 of my pocket money for it. I have since bought a hardback edition but have never fingered the pages, because I don't need to. I also have a french edition - L'etoile Mysterieuse, which sits among my large collection of some of the 100 plus languages that Herge's books have been translated into. 

My new favourite pastime is to sit back on my reclining armchair with a cup of coffee, while Snowy, Teddy, and I watch on as the birds, squirrels and humans pass by the window. It's far better than watching Doctors. 

I had a hospital appointment to remove the implant that was put in in January 2023 after my initial fall that they originally thought might be cardiac, but obviously turned out to be the start of my Motor Neurone Disease. The battery has been flat quite a while now, so it's no use to me in my chest. It was removed under local anaesthetic, and Alice accompanied me and brought me a nice coffee, once I had returned to the ward.

On the fundraising front, I would like to thank my daughter Rachel, and my friends Andy, Colin, and Phil for taking on the Run 31 miles in January challenge for the MNDA, raising a total of £754! I'm also pleased to say that two of my friends have signed up to Move 30 Minutes Every Day In March for the MNDA, and four more are busy training for marathons, again raising money for the MNDA.

Penny from Vegan Runners was the latest friend to receive her charity top. When our friends signed up to run for the MNDA, we thought we'd just be watching them from the sidelines but now we might even see them out on the course!

And before all that my daughter Anna, is running the Brighton Half Marathon. Her training was going great guns, until she tripped hurting her calf and ankle this week, but she is very determined to run it for me, and I'm in no doubt that she will! 

What a couple of weeks then! Despondency to elation. The first at home feeling sad, and the second out and about and loving life.

I'm sure there will be more frustration and disappointment over the next few months as the MND takes hold, but we've got exciting things planned including overnight stays at Brighton, Bath, Bristol, Southsea, and now London!