09/06/2024 - 'RIP Rob Burrow' by David

I have to start this week's blog with the recent sad news of Rob Burrow passing on.  We'd only just published the blog that day when Alice saw the news on Facebook and we were both left feeling shocked and upset. 

The former Leeds, England and Great Britain Rugby league player and Motor Neurone Disease Association patron has lost his fight with MND but has gained the respect of millions by bravely sharing his journey with the public and raising awareness of the disease. Together with the love and support of his wife Lindsay and the amazing charity marathon running exploits of his friend and former team mate Kevin Sinfield, they have raised millions of pounds for the MNDA, taken us all on an emotional journey, and left a legacy that will inspire and educate as we find a cure for MND.

If you haven't seen the BBC documentary shown the day after his passing called There's Only One Rob Burrow then please do on my behalf. It's a hard watch but I really would like you to x

My own MND journey continues with another week of ups and downs and highs and lows, and I have a new symptom to report. I have noticed that the fingers on my left hand start tingling, lose all colour, and go numb, usually but not always in colder temperatures. It's obviously a lack of blood supply, but whether it's related to my condition or not, I don't know. It may be Raynauds, MND related, or just aging. By wiggling my fingers in a glass of warm water, the feeling and colour returns but bearing in mind that we are now in meteorological summer, I wonder how they will fare when temperatures drop? As always, Alice has my back and a few days later she presented me with a chargeable hand warmer! So with gloves aswell, my pinkies will be snuggly buggly all winter through!

I had some good news though with the delivery of my blue badge, which enables Alice or anyone else dropping me off or picking me up, to park for free on street parking, even on double yellow lines, so that will definitely be useful as my mobility worsens however in the same few days, I heard I was turned down for the electric wheelchair. The reason? We don't have ramps in the house. So we're awaiting these to be put in by the council and we've now been assigned a case worker so hoping this will all get done soon and I can run some toes over.

The other good news is that I will never have to cut my toenails ever again. I've passed that pleasure on to Alice, who is suitably (un)impressed. We binge watched 3 episodes of The Outlaws on BBC and I sat with my feet up on her lap while she tackled the talons that I can no longer manage. 

I also received another nice surprise in the post, this time from Alice. A 7", numbered and signed square picture disc of La Roux's Bulletproof. I played it Wednesday at the open decks night at the Overdraft along with:

Love Is in Your Eyes - The Lemon Trees

Club Country - The Associates 

Bulletproof - La Roux

Making Plans For Nigel - XTC

Pretty In Pink - The Psychedelic Furs 

Dance Hall Days - Wang Chung

Start! - The Jam

Reconnez Cherie - Wreckless Eric

Open Your Heart - The Human League 

Loverboy - Chairman Of The Board 

Rush Hour - Jane Weidlin

Cars - Gary Numan

More More More - Carmel

Price You Pay - The Questions 

Europa And The Pirate Twins - Thomas Dolby

China Girl - David Bowie

Say Hello Wave Goodbye (extended version) - Soft Cell

After playing the midweek open decks DJ nights many times, where anyone can put their name down, bring a handful of records and play for an hour, I finally got my own, solo Friday night slot. Overdraft, is a bar specialising in craft beers and ciders, with an in-house vinyl store, and DJ decks in Southampton. I can usually fit about twenty 7" singles into an hour, but as I was playing from 7.30 to close at 11.30, I was able to play from my extensive collection of 12" singles, which feature extended and remixed versions. I took 41 7"'s and 37 12"'s and I played most of them.

I played a 4 hour set of mostly soul, funk, hip hop, electro, disco and new wave, and diners, drinkers, Alice and many of our friends came to support me, including Guy, Neil, Julie and Caroline who travelled over from the island for an evening of DJ Tintin! 

I was very grateful to have been given my own night and had already had a great time, when I was handed an envelope with 'money for DJ' on it! I had presumed, and was quite happy to play for just a free beer, so I couldn't believe it - I'm now a professional DJ! 

On Saturday a convoy of three cars containing twelve of the Baker clan travelled up to Wellingborough for my Auntie Gill's 80th birthday. Being Saturday and being us, we managed to pack in a parkrun while the convoy, including our ride up there, was on the ferry over from the island. Southampton, like many other parkruns around the country had encouraged people to wear yellow and blue or orange and blue in memory of Rob Burrow and it was lovely to see so many in the colours of Leeds and the Motor Neurone Disease Association.

We wore our MNDA running vests and it inspired Alice to run our fastest 5k on that course.  

Rachel and Max collected myself, Alice and Fin from our house and used the opportunity to have a look round our new pad. Coming out of the house, and laden with bags, I couldn't quite lift my foot over the doorway and stumbled into the wall, cutting my elbow and bloodying my shirt. This was my second wobble of the week but I've still yet to fully fall over. I was more annoyed about my shirt than the wobble to be honest!

Stopping for a Starbucks en route, we used my blue badge for the first time and parked in a disabled bay right outside which was very handy. 

Anna joined us from London and we met up with my mum's sister and brother's extended family for a lovely afternoon of sunshine, food and fun, an overnight stay and a morning of more chat over coffee and cake before the caravan of love headed south again. 

We all originally lived in High Wycombe in Buckinghamshire before the Bakers moved south to the Isle Of Wight, and the Smiths and Bunces moved north to Northampton. So because of the distance between us, and the busy lives of the parents, children and grandchildren, we only see each other for the happy or not so happy occasions these days. This one was a happy visit and it was great to see them all again. 

It's back to reality with a visit to see my neurologist tomorrow so I'll report back on his verdict on my progress next week. 

In the words of the late, great, Rub Burrow, "In a world full of adversity, we must dare to dream"