24/09/2023 'The happiest week since diagnosis' by David

This week, after many things that didn't, everything went in our favour, and we have so much to tell!

We have found a house! It's the right size, in the right area and has the potential for a bedroom and wet room downstairs, that I will one day need. We've had a few disappointments recently with potential properties so we were really happy when our offer was accepted. 

The week didn't start out great though.

Life wouldn’t be normal without a Baker drama and on Saturday as we prepared to leave the house to drive to our local parkrun, I couldn’t find the car keys and while I frantically searched the house, Alice was taking off her running gear with steam coming out of her ears and getting back into bed. One of our lovely running buddies saw our sad message that we wouldn’t be able make it, and from his position on the start line, he immediately ran back to his car and told us he was on his way. Minutes later, with Alice suitably re-attired, Jon and his dog Jasper were screeching around the corner and after parking up and running towards the start, we saw the lead runners on their second lap. So we started off in search of the tail walkers and such is the camaraderie of our running friends that some of them had walked from the start so that we could catch up and the rest of the run was taken up with our friends recalling the many tales of how the Baker’s ‘life on a knife’ attitude has become legendary! And where were the keys after all this drama? In one of Alice’s shoes – of course they were!

Then the next day, my first festival DJ set at Beats & Eats in Southampton was cancelled due to the weather, which was very disappointing but as we looked out of the window at the time I was supposed to be playing, it was raining sideways and blowing a hoolie so I think they made the right decision.

As the working week began, everything changed though and good news followed good news!

Firstly, my lovely colleagues at work have organised a Great Office Bake Off to raise money for the MNDA, with four categories over four weeks in four different offices. After judging the offerings, the goodies will be sold off for cash. The first week is cupcakes and muffins and as a trained chef, albeit many years ago, I feel indebted, but nervous to produce something edible and well presented. 

Then, I had a nice pick me up moment, when two members of 80’s mod revival band The Chords, that my brother and I used to love, reached out to me on Facebook, Billy promoted my blog and Just Giving page on their band’s page and Buddy signed a poster for me and also sent CDs signed by all the band! Thank you for your kind words boys!

On Wednesday, my Citroën 2cv Zippy passed it's M.O.T first time.  It has been off the road for over a year as it had to go to the car hospital for some welding. It was built in 1984 and has been re chassied once already so it now has brand new floor panels and is ready to go once again. I plan to enjoy driving it for as long as I can before I sell it on. I will be sad, as I've had it nearly 20 years but, unfortunately this crappy disease means that my driving days are numbered. 

Then that night, I travelled over to the island to see some longstanding friends. 

The band I play in have agreed to do a MND fundraising gig in the town I grew up in and as we haven’t played for over a year, it was great to meet up for a rehearsal. I play percussion and sing and was a little worried that the weakness in my arms would be problematic when playing the bongos and shaking a tambourine but it was actually fine, although we only went through about 10 songs and we have 20 in our repertoire. So far, the MND hasn’t affected my voice so the singing was fine (although, I suppose those listening on the night will be the judge of that!)

The next day, Glen, a fellow football fan and running mate on the island, got in touch to say that he is organising a charity 'friendly frolic' run, where runners will run laps and loops from a pub in Newport in October for the MNDA.

Alice was concerned last week that my voice banking via Speakunique didn't sound enough like me, being too slow and too Northern but they adjusted it and we both agree that it sounds much more like me and we're really happy with it now. Alice proceded to have fun all night typing out sentences and getting me to announce all sorts of phrases including swear words! "Come on Derby", was my favourite, "Alice is the best wife in the world" was acceptable, "Up your bum" wasn't. 

Life with MND isn't just smiles and laughter though. My appointment at the Countess Mountbatten Hospice came through this week, which obviously, we have mixed feelings about. If I need their services, it will mean that I am nearing the end, but I am very grateful that they are there for me and I will take up their offer of having a look around their facility. I have never been inside a hospice but I am told they are very welcoming, comforting and peaceful. 

The next visitor to our house in the long line of MND health professionals was Gemma, a Neuro Occupational Therapist and like all before her, she came on Thursday and was absolutely lovely and very helpful. She measured me for a wheelchair and reassured us we live in an area where mobility aids are more easily accessed. We will definitely need her help as we go forward, she even offered to come out to the new house to advise on the set-up which will be a great help. 

With regard to my symptoms, I used my walking poles this week for the first time since we went walking on the welsh cliffs. I seem to be fine on level ground, but I do find the hills a challenge now. I’m yet to be told by my physiotherapist whether I should be pushing myself or saving energy, so in the meantime, I am doing just enough but not too much. Even though I have stumbled a few times, I haven’t yet fallen, although I’m aware that it will happen sometime. That will be a sad day as it will probably be the day that I need a stick or a pole permanently.

Then, on Friday, we found our house. We can't get too excited as we still need all the usual surveys and contracts but it looks perfect for all our needs so we are excited to get started on converting it to how we want it, and how I need it. I'm really pleased for Alice as she has put so much effort into finding a safe place for me to live in and this will be our first house that we own as we have previously been renting. It's in Salem Street and as we were walking up to the property, we sang "Don't Give Up On Us Baby" to each other. If you get the connection, you win a lollipop!

We celebrated the end of a lovely week with our weekly parkrun, this week at Great Salterns, near Portsmouth followed by another 5k in the evening. Dash In The Dark is a fundraiser for the Hampshire and Isle of Wight Air Ambulance and involves running around Southampton common, under illuminated trees wearing glow sticks and we got to meet Teddy Medic too! Afterwards, there was an open air silent disco - and who doesn't like a silent disco? Anyone with their hand up is just no fun!

I'm thinking cougette and lime cupcakes?

Let's talk again next week x