30/06/2024 - 'My big brother, #syrun365 and a dip in the sea' by David

This week I was reminded on Facebook memories that a year ago, and just weeks before my diagnosis, I completed a half marathon* (*editors note - it was actually more than a half at 15.5 miles) at the Ultra London event. This demonstrates just how progressive this disease can be, as I can only walk for about 5 minutes before I need to rest my legs these days, and that is with my rollator or Alice's arm too. 

I tested my legs on Tuesday on a visit to the hospital and made it to the bus stop and then onto the main entrance where Alice met me. We weren't going for an appointment though, we were going to eat cake! My old research department was holding a Mad Hatter's Tea Party and we all wore hats and filled our faces for two charities, The Motor Neurone Disease Association and Marie Curie. I made some butterfly cakes and added them to a long table of offerings. I must admit that I ate four cakes during my visit, but in doing so, I felt that I had really done my bit for charity.

It must have been upsetting for my former colleagues to see me using a rollator, as the last time most of them had seen me was the day I gave up work last December, when I could still walk unaided. They all said how well I looked, and I assured them that life is still good and that I was enjoying retirement.

In the evening we ran with an extraordinarily motivated local runner. In 2013, Simon Williamson decided to run 100 different marathons for Parkinsons and he completed this amazing feat in 2021. His latest fundraiser is to run every day for a year with different people. He has a calendar which you just add your name to, choose your distance and location and he'll turn up and run with you. He says its great for him as he learns so much about total strangers from all ages and walks of life in the short time they have together. He pushed me while Alice ran alongside and I was day 177 of his challenge which has already raised over £21,000 for a Parkinson's charity. You can book in with him here:

https://calendly.com/simonwilliamson/syrun365?fbclid=IwZXh0bgNhZW0CMTEAAR3mekibkJC9sdGtgLmMaq_Oj59T4_S4je3mayNJMXeIsb_4BfGOZIuapw0_aem_Gq7AkrWSu4Fawp9jk2HKJA&month=2024-07

We are in the middle of a heatwave in England so I spent a couple of afternoons sunbathing, drinking Coke floats and reading the Tour De France race guide, and I'm very much looking forward to watching my first tdf as a man of leisure - chapeau!

I had two very enjoyable visits from three very lovely islanders. Guy and Julie came over on Thursday to see me and our new house and they brought over a Queen Victoria Labelia, and some Isle of Wight jam and cider, which was very kind of them. I realised after they had left that I hadn't shown them the upstairs rooms or made them a hot drink. I gave them a glass of water on arrival as it was a hot day and we just got talking - they didn't even get a biscuit! 

On Friday, I spent a lovely afternoon and evening with my brother, Rich. Over two cups of coffee (sorry Guy and Julie), we looked through all the Subbuteo, Scalextric and football cards that we used to play with as kids, that I unfortunately need to move on to someone else pretty soon. He took a few bits but the rest will be sold for charity. We had the record player on and we went through all the Style Council, Sade, Kane Gang, Animal Nightlife, and Big Country records that we used to play on our stereo hifi systems in the mid 80's. 

We had a great afternoon laughing and reminiscing before we got the bus to Overdraft, the bar on the outskirts of Southampton where I DJ. Known locally as the 'Mutant Mile', Shirley high street is a long, straight, weird but wonderful row of pubs and shops, and Alice and I love to 'people watch' as you see all manner of strange sights. My favourite was a man in a t-shirt, jogging bottoms and braces! He was still probably one of the better dressed out that day too.

It has a great vibe though, and Rich loved the food, the craft beers and the racks of vinyl at Overdraft, and is eager to return. We have always been close, but my terminal diagnosis has brought us even closer. I think we both know that we need to condense all the laughs and good times from the next 20 or 30 years into the next 2!

Earlier on Friday, the cassette of songs by Southampton and IOW artists, that I have curated to raise money for the local branches of the MNDA arrived! It's a great package including a booklet and a free download code, and it looks and sounds great. It's available from the Chalkpit Cassette Club website if anyone would like to hear some top tunes while raising much needed funds for, and awareness of Motor Neurone Disease. Get your copy here:

https://www.chalkpitcassetteclub.com/cassettes/p/mnd-can-get-in-the-solent-charity-compilation-cassette

The cassette includes Rich's son, Frankie's band Xockha, with a nice photo and a short band biography. We lost Frankie last year, and Rich has had to come to terms with losing our dad, his eldest son, and soon his brother, all in a short space of time. We chatted about Frankie and his younger brother Rio, and it's all just very sad but he will get through it in time, like we all have to.

On Saturday, Alice pushed me around Poole parkrun and while I sat back and enjoyed the sunshine and the scenic lakeside course, Alice for the first time, managed to run the whole 5k without any walking. 

I came first in the male wheelchair category, although, to be fair I was the only competitor. We then went to Branksome beach for a quick dip and an ice cream.

I was OK getting into the water but the waves, as I attempted to walk back to the beach were too strong for my feeble pins, and I had to be helped. Earlier, after the parkrun, I got out of the buggy to say hello to one of our friend's daughter, and I clipped my foot on the front wheel and tumbled to the ground. Although l was annoyed and embarrassed as it was in front of lots of people, Alice said it was actually quite comical as I fell in slow motion and she initially thought I was playing around. Unfortunately, I didn't have the strength in my legs or arms to get myself back up, so I needed my trusty sidekick to rescue me and pull me back up to my feet. 

As it was a stumble due to the buggy, I'm trying to convince myself that I still haven't actually fallen since my diagnosis. It shook me up a bit but after a strong coffee and a quick visit to a record shop to purchase a couple of Crowded House albums, I was soon feeling much better. 

I am realistic though and I know that it is inevitable that I will one day fall while walking, and that I will have to use a wheelchair full time while outside but I am determined to walk for as long as possible. You may remember that I set myself a goal of being able to walk Rachel down the aisle in April, which I did successfully. Well I have now set a new goal of being able to walk up to July the 17th, a year since my diagnosis, and once I have achieved that, I will set a new target, and when I'm in a wheelchair I will start a goal for my arms and hands. I am going to give MND a good run (or walk) for its money!

We ended another busy but enjoyable week with a trip over to the island to see family and friends. 

My good friend Paul, who I have known since we were teenagers, played guitar for Alice and I at our wedding and was the celebrant at our vow renewal. He is also a successful touring musician, and he completed his latest jaunt around Britain and Belgium at sleepy old Cowes. He was recently a guest on Mark Radcliffe's Folk Show on BBC Radio 2, singing live in the studio, and was again in fine form and fettle. We met up with friends and as is his way, Paul mesmerised us with his beautiful heartfelt songs, and his tender and reassuring voice. He has a love song called 'You' which is Alice's favourite and he dedicated it to Alice and I and he had me in tears. 

Alice had to race off for the boat as she was working the next morning poor thing, but I was able to stay over as I am going to spend a couple of nights with my dear mum. News of that, and other exciting Baker adventures next week chums! x