04/02/2024 - 'MND takes everything...' by David

It's 12 months since my 'Theory Of Everything' moment. Anyone who has seen the film with Eddie Redmayne playing the part of Stephen Hawking, will remember the moment when he falls to the ground with a thud and his world changes forever. Unlike a 120 minute film, my story is thankfully told in real time and in the last year, I have come to terms with my condition and, in fact, embraced life ever since.

It's impossible to determine the actual date of my first symptoms as Alice had noticed twitches in my legs, and I had been getting leg cramps for over a year, but my fall while out running last January, training for the Brighton marathon was definitely a turning point, and from that moment on, we both realised that another marathon was beyond my capabilities, and that I should get my body seen to by professionals. We both hoped it was leg related, but unfortunately, as the tests, went on, it was becoming obvious, that it was neurological, and I was diagnosed within months. 

So 12 months on, I am still walking,  talking, and smiling and life is definitely different, sometimes difficult, but ultimately, I am happy and fulfilled. 

I received some good news this week, when I received the results of the blood test I had taken months ago, to see if I have the genetic form of MND, and I'm happy to report that I don't! About 10% of sufferers have inherited it from their blood relatives, and although it might actually have been better for me personally, as there are drugs available to slow the progression of familial MND, it is most definitely the outcome I wanted. 

It is such a relief to know that I haven't passed this gene to my daughters, as this may have affected them, or any children that they may have. I told both my daughters and my siblings the good news, as this will mean that they have no higher chance of having MND than anyone else.

We have all been amazed by the inspirational exploits of rugby players Doddie Weir, Rob Burrow and Kevin Sinfield over the last few years, and March Of The Day is aiming to provide something similar in the world of football. Stephen Darby, ex Liverpool and Bradford player, and Marcus Stewart, who played for Ipswich and Sunderland, both have MND and are just as keen to raise money and the profile of MND as their rugby counterparts. The event, a 178 mile walk over two and a half days in March, starts at Bradford City FC, finishes at Liverpool FC, and visits 17 clubs on the way. Over 60 former professional footballers will walk with MND sufferers and carers, and The Professional Footballers’ Association have come on board as the main sponsor. They have already raised over £30,000 and many teams are sending representatives to show solidarity to a disease that seems to be prevalent among athletes. If you want to know more, please search online for Darby Rimmer MND Foundation. On a slightly different theme, it is really pleasing to see that Luke Littler, the 16 year old darts sensation, will wear the MNDA logo on his shirt in the 2024 Premier League season.

All this fundraising is certainly raising the public's consciousness of this rare but devastating illness, and the importance of finding a cure. You may also have seen a short film that premiered during the ad break in this week's Coronation Street on ITV, to coincide with a storyline in which one of the characters is living with MND. It shows a lady caring for her partner as the disease takes hold of his body. It's not an easy watch, in fact Alice and I were both in tears, but we think it is important for all our friends to watch it, so we shared the link on our Facebook pages. There are 3 other films that will be shown in coming months. The film finishes with the words "MND takes everything, but it can't take the love inside". 

Alice, Fin, and I have been sorting through all our stuff ahead of our move, and we ended up with two bin liners packed full. When I dropped off the bags at the charity shop, I noticed that the shirts that I dropped off the day before, were already on the racks. I rearranged them for a photo and the three closest to the camera were mine. 

 

I took the first of my daily doses of the research trial drug that I signed up for last week, and it tasted horrid! They told me in a clinic that it in syrup form, for those MND sufferers that are tube fed, and because they used the word 'syrup' I assumed that it would be sweet - it wasn't! I'm on day 4 and I haven't had to document any side effects on the diary that I am filling in, although it's a blinded drug verses placebo trial so I could be swallowing nothing more than just an unsweetened syrup. 

Riluzole is currently the only drug available that slows symptoms, and when it was first prescribed for me, my consultant said that it's important to weigh up the impact of any side effects against the quality of my life. Its important for people with MND to keep their weight up and I have not had a big appetite since I started taking Riluzole. I also feel full very easily, so I have temporarily stopped taking it to see whether my appetite improves. If you can't enjoy food, then you can't enjoy life right?

We travelled to Salisbury for parkrun this week and we met up with our Wiltshire and Dorset friends for a 5k shuffle followed by breakfast and as usual, it was the highlight of my week.

The love and support shown by our friends, and also the wider parkrun community is amazing and means the world to us.

It was a 4 loop course in a park by the river, and once the faster runners in our 26 strong group had lapped us and finished, some of them came and joined the 'Baker fun bus" at the back and helped me to the finish line, where the others were waiting to cheer me in. It's very emotional and I love them all. 

I spent Saturday night in the hilarious company of Dee, Bunny, Kev, Carl and Dazzer, a bunch of old school mates and we roared with laughter at the delinquent and immature antics that we and our friends got up to all those years ago. Being blokes, not one of us thought to take a photo but rest assured, we all looked gorgeous!

I finished my week with a really nice Sunday afternoon DJ set at Overdraft, in Shirley with some of our lovely friends, including my daughter Rachel, who came over from the island to surprise me. 

I have previously had an hour to play as many 7" singles as I can, but this was a leisurely 4 hour set, which meant I could play lots of my 12" extended versions, enabling Alice and I to sit down and chat to everyone between records

I also chose a more laid back set, leaving my punk rock vinyl at home. What do you think of my set?

Haircut One Hundred - Favourite Shirts

Carry Simon - Why

Forrest- Rock The Boat

JB's All Stars - One Minute Every Hour

Tina Charles - Love Bug/ Sweets For My Sweet

Heavy D & The Boyz - Mr Big Stuff

Martin Stephenson And The Daintees - Boat To Bolivia

Orange Juice - Rip It Up

Princess - Say I'm Your No 1

The Kane Gang - Closest Thing To Heaven

Momus - Don't Leave

Aztec Camera - All I Need Is Everything 

Japan - Nightporter

Scritti Politti - The Word Girl/Flesh & Blood

Englandneworder - World In Motion

The Psychedelic Furs - The Ghost In You

Talk Talk - It's My Life

Tom Robinson - War Baby

Animal Nightlife - Mr Solitaire 

The Style Council - The Lodger 

Everything But The Girl - Come On Home

The Christians - Harvest For The World

Paul Hardcastle - 19

Thompson Twins - Hold Me Now

DNA featuring Suzanne Vega - Tom's Diner

The Style Council - You're The Best Thing

Tom Browne - Funkin For Jamaica

The Dream Academy - Love

Orange Juice - I Can't Help Myself 

Will Powers - Kissing With Confidence

Soft Cell - Say Hello Wave Goodbye 

Prefab Sprout - Nightingales

Eg & Alice - Indian

Blancmange - Waves

Altered Images - Don't Talk To Me About Love

The Bible - Mahalia

Aztec Camera - Jump

We put the charity box, wristbands and badges on the bar and we raised £93, which isn't bad for an afternoon doing something that I absolutely love! Graham, a fellow DJ friend of mine brought his family and their daughter asked me about MND and after I told her that even though my diagnosis is very sad, I am living a very happy life, she has decided to subscribe to this blog. She said she would tell all her friends at school about MND, and I told her that would make me very happy. So hello Holly, and thank you! Not only are you mentioned in this week's blog, but there is a photo of us both at the decks too!

I also spoke to Adam, who has totally turned his life around in the few years that I have known him. He is now at University, studying for a degree, playing football twice a week, training for a half marathon, learning to speak Spanish and walking up mountains! Well done Adam, you are an inspiration to us all.

Well that's about all for this week, I'm sure there is more trivial drivel, and mixed emotions, just around the corner but despite my silly hands making me smash a coffee cafetiere and a glass bottle this week, I remain determined to do as much as I can for as long as I can and enjoy myself while doing it.

Remember, MND takes everything, but it can't take the love inside x