24/03/2024 'Love is a wonderful colour' by David

While rummaging through the possessions that I have accumulated over the years, I realised that I have very few photos from my childhood and into adulthood apart from school photos or holiday snaps. Neither of my parents were keen photographers, so the paucity of photos is understandable. Before digital photography was a thing, camera films had to be bought, then taken for processing either at a shop or sent off in the post. The family camera only came out for special occasions, and the thought of taking a photo of your food, or taking a camera into a nightclub in those days, would have been preposterous. Consequently, photos of my friends are few, as are photos of the things that were dear to me while growing up, like my first bike, Rich and I playing subbuteo, or the cowboy fort I got for Christmas. I don't even have a photo of my first car, which is a shame. Luckily I have photos of all my other cars, and the few photos of my friends are special reminders. There's nothing like a good old terminal illness to stir up the memories, and whenever I meet up with my old school friends, we have each other in stitches, remembering those great days.

On Monday, Alice and I watched the 1942 film The Pride Of The Yankees, which is a black and white dramatisation of the life of Lou Gehrig, regarded as one of the greatest baseball players of all time. He is also famous for being diagnosed, and dying of Amyotrophic Lateral Sclerosis, which is exactly what I have, at the age of just 37. In Britain, we call ALS, Motor Neurone Disease, but in America, so revered is he, that it is commonly referred to as "Lou Gehrig's disease". It was a melodramatic, corny, and sickly sweet picture, that made us laugh, but we knew what was coming, and by the end, we watched in silence as he suffered the same unexplained fall, limb weakness, and sadness of having to give up the sport he loved, as I have experienced. 

He famously, played 2,130 consecutive games for the New York Yankees over 14 years, alongside Babe Ruth, and on his retirement, he gave a speech in front of over 60,000 people, saying "For the past two weeks you've been reading about a bad break, but today I consider myself the luckiest man on the face of the earth".

Following his retirement from baseball, Gehrig wrote, "Don't think I am depressed or pessimistic about my condition at present." Struggling against his ever-worsening physical condition, he added, "I intend to hold on as long as possible and then if the inevitable comes, I will accept it philosophically and hope for the best. That's all we can do." I admire his words, share his optimistic tone, and hope to remain as positive as he was, in my journey. 

I had a video appointment with the principal investigator of the MNDSmart research trial that I'm taking part in. It's a blinded drug verses placebo trial, and I told her that I think I'm on the placebo arm as I've had none of the side effects that is associated with the drug. I also had to tell her that my mobility and my hand strength have deteriorated quite rapidly in the last month. 

On Wednesday, I had a respiratory appointment after my last lung capacity test showed a deterioration, and I walked to get the bus, which takes only 5 minutes, but I was ready to sit down by the time I got to the bus stop. I honestly don't think I could walk without my stick now.

I was seen by a health care assistant, a physio, and finally a doctor, and my bloods and cough test were fine, but my sniff test was less than expected, so they think my diaphragm is slightly affected, but the good news is that there is no sign of bulbar MND in the mouth, which is what Rob Burrow has and Doddie Weir had. I do get strange feelings in my chin and jaw area, and I know that 80% of MND sufferers lose the ability to speak, but at the moment my croaky voice is holding up, and my swallowing is absolutely fine.

The signs I need to look out for respiratory wise, are difficulty breathing while lying flat, sleep deprivation, and headaches on waking, which indicates a inability to expel cO2, none of which I currently suffer from. Alice and I were both happy with these results, as was the doctor, who said he didn't want to see me again for 4 months. 

While at the hospital, I took the opportunity to meet up with my ex colleagues for a coffee outside in the spring sunshine, and my lovely friend Rachel, had made some vegan and gluten free shortbread, which was delicious.

In the evening, I played another DJ set at the open decks night at Overdraft, again with my friends Darren and Tom. As usual, I played an eclectic mix from my collection ranging from jazz, soul, funk and pop, to glam, electronic, reggae and punk. 

DJ Tintin, Overdraft, 20/3/24.

Sally - Carmel

Voyage Voyage - Desireless

Loverboy - Chairmen Of The Board

Part Time Lover - Stevie Wonder

Kick Over The Statues - The Redskins

Play To Win - Heaven 17

Smooth Operator - Sade

In Your Car - The Cool Notes

I Love The Sound Of Breaking Glass - Nick Lowe

The Only Living Boy In New York - Everything But The Girl

Genius Of Love - Tom Tom Club

Dynamite - Mud

There's A Ghost In My House - R Dean Taylor

Head Over Heels - Tears For Fears

Today - Talk Talk

Good Thing Going (We've Got A Good Thing Going) - Sugar Minott

I Ran - A Flock Of Seagulls 

Somewhere In My Heart - Aztec Camera

Let The Music Play - Shannon

Anarchy In The UK - Sex Pistols 

Darren (DJ Dizzy) followed me with a superb mix of 12" 80's dancefloor favourites, and Tom (DJ Cockles) finished the night off with a great mix of world music, and 70's rock, and as a surprise for me, he started and ended his set with songs from the record that my band Bobby I Can Fly have recently released, which was a really nice touch.

On Friday night I was excited to see two bands that I loved in the 80's, Big Country and The Icicle Works, who are still gigging and touring together. I met my good friend Mark for a beer beforehand and he told me he had spoken to a friend of his, Les, who works with The Icicle Works, and that we were going in to watch the sound checks, and going to meet them before the gig! Apparently Alice knew about it, but didn't say.

Half an hour later, we are sat in the dressing room with Ian and Chris from the band, chatting, laughing, and sharing their rider. We had a great time regaling stories of gigs back in the day, from our point of view, and from theirs. I told them about my diagnosis and the blog, and then we went down to watch both bands sound check, got some photos with Ian and Chris, then with Bruce from Big Country, and his son who is now in the band too. 

The actual show was great, and I watched it with Les from the merch stand, as I could sit down, away from the boisterous crowd. The Icicle Works did 45 minutes with the crowd singing along to their impressive back catalogue, then Big Country came on and blew the roof off with their anthemic rousers. I was clapping, and singing along, and it felt and sounded as good as it did when I was 21! I really do have so many lovely friends who have organised for me to meet footballers and musicians that I admire, and I am so grateful to them all.

Saturday, as always, is parkrun day, but unfortunately, my legs won't allow me to complete even a 5k, so I voluntered to be a marshall at Bournemouth, which is held in the park next to the football stadium. I took a marshal's bib, and encouraged everyone round the course from the comfort of a folding chair, before we retired to the Mad Cucumber vegan cafe for breakfast. 

I will finish with the really great news that my running wheelchair is currently being made. The specialist bespoke chair costs £2681 but thanks to charity grants and donations, it is now in production. Challenging MND agreed to fund £2000, the MNDA gave us £500, and some of our very generous friends made up the remaining £181! We are both so grateful to everyone who has donated to our just giving page, as your kindness has helped to buy my chair. Alice is looking forward to pushing me around, and it will enable me to continue to participate in something that is very dear to me x