28/01/2024 - 'Breakfast chef required - apply within' by David

We did it! You will be pleased to see that we have finished our latest jigsaw, but not as pleased as we are! Our friend Guy, bought it for us as a Christmas gift, and he either doesn't do many jigsaws, or he really doesn't like us that much, because it was so hard. There is so much greenery and brown(ery) which meant that it took far longer than usual, and many hours of frustration before we finally, and thankfully put the last piece in this week. 

On Tuesday night, I travelled to Reading to watch the mighty Derby County. For any non football fans reading this, yes, I am being facetious when I say mighty. I started supporting Derby as a 7 year old in 1972 as they were the champions of English football and had a charismatic manager in Brian Clough. They won the championship again in 1975 and I thought I would be supporting one of the best teams for the rest of my life - oh how wrong I was!

Derby have spent a few years in the Premier league, the majority of seasons in the second league, and are at the moment, playing in the third tier of English football. My great friend, and fellow Derby fan/sufferer Hilly, and I found a nice pub just 10 minutes from the ground before the game, and full of optimism and local ale, we were in high spirits, as if Derby were to win, they would go top of the league. Of course, they didn't. They lost 1-0 to a side in the relegation zone, and didn't have a shot on target in the whole game - not one! Luckily, we are very used to disappointment, and despite the result, we had a good night, reminiscing about the laughs we had years ago playing and watching football, the gigs, the festivals, the holidays and our lives ever since. Great times.

I wore a scarf that I had as a kid, with some very 70’s patches sewn on, that hasn't been out of the wardrobe for many years. I wore this scarf for a reason. I found the steps up to our seats very hard and despite these seats, we stood for the 90 minutes, which quite often happens in the away end, so my legs were aching and my feet were going numb. I realise that I won't see too many more football games, so I wanted a photo of me and my scarf for this blog. Somewhere, there is a photo of me as a kid in the 70’s at a Derby game, in a lumberjack coat, wearing that scarf. 

Despite owning hundreds, we have not played a CD or DVD for well over a year now so we decided that they were surplus to requirements. You may have heard of a company called MusicMagpie, where you scan the barcodes and they tell you how much they will give you for every CD, DVD, game, or book, then send a courier around to collect them. The amount is laughable, almost always less than a pound, and even less than 10p sometimes, but it reflects just how streaming platforms have replaced physical items and it will give us a bit of pocket money, and much more space. It's frustrating thinking about how much we have paid for all those CDs and DVDs over the years but hey ho!

While Alice was helping Fin to sort through his mountain of Lego, I scuttled off to sort out the even bigger mountain of crap that I have accumulated over the years, that Alice doesn't know exist! I found complete collections of Star Wars and Looney Tunes Tazos (also known as Pobs), that were given away with Walker's crisps (chips for American readers). I found some rubber chips (French fries), and some plastic maggots from my joke shop days as a child. What happened to the egg, or the dog poo, I'll never know! I even found a musical toothbrush holder, given away by Aquafresh (still boxed). That's just the tip of K2 believe me!

On Thursday, we received a plastic duck in the post, like you do. Our friends Guy and Julie, had visited a duck boutique (like you do), in Prague and chosen a lovely turkenoise quackery to go with our collection in our bathroom!

On Friday, I went back to the hospital that I worked at for 16 years, before retiring last December. I was back in the research department where I worked for the last 6 years, but this time I was a participant rather than a researcher.

Alice and I have both conducted our own patient visits in this department so we had a chuckle at seeing pictures of the both of us displayed in reception - Alice on the staff board and myself on a leaflet promoting research. 

I have enrolled on a trial called MND Smart, a drug verses placebo trial, which is looking at drugs that may slow the progression of MND, because at the moment, there is no cure. Over 20 centres in the UK are open, and I am the 44th participant at Southampton. I was enrolled by two lovely research nurses, Kat and Rolan. If they felt any pressure recruiting a fellow research practitioner to a trial, they didn't show it. They were both kind, patient, professional and treated me like royalty, and would you believe that in the consultation room was a photo on the wall of the Needles on the Isle of Wight!

The drug being tested in this trial is called Amantadine. It is a licensed drug that is mainly used in the UK for the treatment of Parkinson’s disease, and fatigue in multiple sclerosis. Whilst it has been shown in other trials to have positive effects in other neurodegenerative conditions, it has only been tested once in MND, where it did not show an effect, but this trial involved only on a small number of participants, and many detailed outcomes were not reported. So its important to get a definitive answer once and for all and if it doesn't work, we'll move on to the next one. 

Because it's a blinded trial, I don't know if I have been randomised to the Amantadine or placebo, so although I have a 50/50 chance of either, this trial, like many research trials, will be more for future MND sufferers than for me, but I am passionate about research and as such, am happy and proud to take part. 

I had a blood test, an ECG, basic observations, lots of questions, a cognitive test, and a free lunch! I start the drug on Wednesday, and I have to keep a diary of any side effects, and I will have a monthly telephone or face to face catch up with the hospital. 

On Saturday I ran my 150th parkrun at my local course Southampton, where I have run 69 times. My first parkrun on 30th July 2016, was actually my fastest time at 21:16, and I have run 42 different parkrun locations including 1 in Germany. I have also volunteered 30 times at both the Saturday adult and Sunday Junior parkruns. On our 50th parkrun together, I had a full beard and Alice had short hair, and for our 100th, we actually ran together in a giant t-shirt!

I have made so many friends and had so many conversations and laughs at this brilliant free, all inclusive event that happens in parks all over the world. 

I was given a shout out at the start by the run director and 22 other Vegan Runners joined me for my milestone among 1179 other runners and walkers. Along the route, as Alice held my arm, we received lots of encouragement and support from people who have got used to seeing a man with 'I'm Fighting MND' emblazoned on his running vest getting slower week by week, but determined to keep going for as long as he can. 

Afterwards, before we all toddled off for coffee and cake, I was given a really lovely present. One of our friends had painted and framed a brilliant picture of Alice and I as fish riding a tandem. She must have read my previous blogs, when I mentioned our beloved tandem and also the fact that one of the things on my bucket list was to see a fish riding a bicycle! Thank you Louise, we love it, and it will definitely be on the wall in our new house.

Did someone mention a new house? Yes! We have been given a moving date of Wednesday the 7th of February, and we are very excited. Lots of sorting, packing and moving talk soon!

I have some amazing numbers for you. Alice tells me that this blog that we started last August, has now been read over 17,200 times in many countries around the world. Infact, just minutes after we sent it out last Sunday, it had already been read in the Czech Republic and in America!

The second amazing number is the amount of money that our just giving page has now reached - over £7000, which is just incredible! We have some more fundraisers already announced, and a couple more in the planning stage, and we are ever grateful to everyone for donating. 

Talking of donations, our four intrepid MND warriors Anna Baker, Andy Barding, Ruth Stockley, and Danielle Marriott have nearly completed their 15,000 steps every day in January challenge, so thank you to your beautiful souls, and your sore, sore soles! There is still time to seek out their Facebook pages and nudge their totals.

Symptoms update - for the first time this morning, I really found preparing our regular Sunday morning 'bacon' sandwich, really very hard. My hands feel like they are drunk, my motor skills are leaving me. It's upsetting for me as I love pottering in the kitchen with the radio on. It's equally upsetting for Alice, but for a different reason. Sunday is her only day to lie in, so her treat of breakfast in bed, might have to come to an end, unless she goes down and makes it herself, but sadly, she's allergic to kitchens (so she says)*

*Editors note - you can get in the sea David Baker!

But I will finish with a bit of good news. Professor Martin Turner, Consultant Neurologist, and one of the top MND researchers in the UK, who I was recently examined by in his Motor Nerve clinic at the John Radcliffe Hospital in Oxford, spoke at the 34th International Symposium on ALS/MND in Basel, Switzerland. He addressed more than 1,600 delegates, including researchers, health and social care professionals, and people living with and affected by MND, with this encouraging statement on the advances in knowledge. "20 years ago I think we were in a fog of uncertainty and we didn't really have much idea what was goin on with this disease, but after research, organisation and thought processes, we are in a very different place now."