29/09/2024 - 'Paddle steaming, giving a talk and presenting an award' by David

Twelve minutes after posting the last blog it had already been read in Singapore, Sweden, and America! Crazy eh? Our blog has now had 40,000 views so hopefully we are raising awareness of Motor Neurone Disease. 

My life at the moment, is one of mixed emotions. I am both frustrated by the weakness in my limbs, and happy that my life is full of so much joy and love. I have days when I don't want to get out of bed, and I shut the world out and wallow in self pity at my desperate situation. Then the next day, I want to see everything and everyone, and I feel happy and content. 

My legs only allow me to walk for about 300 yards now before they wobble and want to give way. So I have decided that I won't walk alone any more as I now need an arm to hold onto. The wheelchair beckons but I'm stubborn and determined to use my legs for as long as possible. 

In addition to cramps and twitches and swelling, I have been getting pins and needles in my feet recently too. My hands are desperate to get in on the act too by refusing to allow me to carry out certain tasks with any strength or dexterity. Washing up, shaving, putting the bins out, and getting myself dressed are all becoming problematic. Luckily I can still wipe my bum (for now!) Oh the joys of MND. 

Now for some good news. I ticked another activity off my bucket list last Saturday when Alice and I went on a trip around the Isle of Wight on the PS Waverley, the last seagoing passenger-carrying paddle steamer in the world. I lived on the island for over 40 years and it was amazing to see it all from a different viewpoint. The sun shone as we sat on the deck eating from our hamper of goodies, listening to a commentary of the geology and history of the island's coastline. Our tickets were gifted to us from Alice's mum June and her sewing group. Thank you ladies.

We learnt about notable landmarks as we past Palmerston's forts, Sandown, Totland and Yarmouth's piers, Queen Victoria's Osborne House, Tennyson's monument, St Catherine's and the Needles lighthouses, and the beach huts at Gurnard bay, where I grew up, and swam as a child. The bars, lounges, engine room and decks of the ship are beautifully restored, we passed the hotel where we were married (twice!) and we had a really nice day out.

The very next day I actually went back to the Island to visit my family. Alice dropped me off at the terminal in Southampton as I can no longer walk to the bus stop, my brother picked me up at Cowes and my sister took me back down two days later. While I was over, I saw nearly all of my family and ate and drunk well.

I presented my MND journey this week to LV Financial Services as a guest speaker in their monthly Diversability Network Meeting documenting my life before and after diagnosis, and talking about the future and our fundraising. This was the second time I've spoken to an audience about MND, and I'm determined to raise awareness of the condition. It was an emotional speech to make, especially when talking about my daughters and I could see that some people were in tears listening, so it must have been impactful. I took questions afterwards too, and was able to answer some really important questions. I was invited to talk by a friend of mine, Jay who works at LV and it was part of their National Inclusion Week. Jay is also raising money for the MNDA by trekking a return route of the entire south coast path, a distance of 1260 miles! I have lovely friends!

Giving this talk meant I wasn't free to attend another bake-off, hosted by my friends at my former work department but it went ahead without me. This week was cupcakes and muffins and despite our best efforts Wednesday night to bake alcohol-free gluten-free vegan gin and tonic cupcakes, they ended up inedible and got chucked in the bin! But thank you to everyone who did submit an edible entry and donating lots of much needed dosh to our fundraising page.

Talking of fundraisers, my daughters are both taking on further challenges for the MNDA. Rachel is doing 5,000 squats in November and each squat represents someone in the UK living with MND, while Anna is in training for the Brighton half marathon in March. Go girls!

With Alice at work and Fin at school, Teddy the cat and I have a lot of time to relax and because of my mobility problems I spend most of that time on the sofa or lying in bed. This gives me the perfect opportunity to play records, read and watch TV and I'm not short of material. 

I'm re-reading my old Tiger, Shoot, and Roy Of The Rovers comics from my childhood and I'm really enjoying them. I'm also working through a big pile of books that I have never read, or that I would like to read again. I'm currently re-reading John Irving's A Prayer For Owen Meany, one of my favourite novels, and there are many more in the pile.

I'm enjoying sitting out in the conservatory playing all of my albums through, and I'm not even a quarter of the way through them yet so I'm going to get through lots of coffee and cake before I'm finished. 

I have also given myself the task of watching all the episodes of Poirot and Sherlock, all the Planet Of The Apes films, and to catch up on all the David Attenborough BBC Wildlife series'. After that I plan to re-re-watch all episodes of Alan Partridge, aha!

And all of that is in addition to all the sport I have watched this year - The European Championships, the Tour De France, Wimbledon, the able and Para Olympics, and the football now that the new season has started. I'm not sure whether Teddy the cat or I get the gold medal for lazing around the most, it's probably a very close thing. 

But of course, we do seem to be as busy as ever. We were gifted cheap tickets to the Rock Orchestra at the Guildhall by our friends Jasmin and Andrew which we very much enjoyed and we had a drama when Teddy fell behind the bookshelves and couldn't be rescued without the help of Alice's dad and his toolbox! 

My brother and his son Isaac travelled over from the island to stay over at ours for pizza and while Fin and Isaac were playing with their VR headsets, Alice, Rich and I watched BBC's reruns of Top Of The Pops from 1984 and 1988. Teddy roamed around getting lots of attention. 

Isaac ran Southampton parkrun and beat us by 1 minute, mind you he's a fresh 14 year old and poor old Alice has to push 80kg around while also running.

She recorded our second best time for the Southampton course so well done Isaac and well done Alice. 

Alice and I finished our week as guests of honour at a football match between two sides from the hospital football team. I set up the Monday night kick about 10 years ago, while I was working in neuro theatres, and looked after it until my diagnosis, so it was very nice to see that it is still thriving with over 100 doctors, surgeons, dieticians, anaesthetists, nurses, ODPs, HCAs, and physios playing. They organised a game in my honour and I handed over the David Baker Cup to the captain of the victorious reds, who beat the blues 5-2. Alice and I were presented with a £400 donation to our Just Giving page from the players. I really do have some lovely friends. 

I consider myself so lucky that even though I can no longer take part, I am still involved with  two things that have played such a big part in my life - football and running.