12/01/2025 - 'Alice takes over' by Alice
I have been tasked with writing the blog this week. Mostly because David has been feeling under the weather with a winter virus and doesn’t feel like he has done much worth updating you all on.
He has certainly been rough for the start of the year and as I said to him, he is a right grump when he is feeling ill! Just like Teddy, he spent most of his time asleep, only venturing down for food before skulking back upstairs. We always laugh about David’s ridiculously high threshold for using medication when he is ill. If he has to take two Paracetamol, I know it is serious and he will declare ‘I’m on the tablets’ but he's feeling better now.
We stayed up late on New Years Eve to watch the fireworks from London and see in the new year. Although we smiled and raised a toast, I personally had very mixed feelings about the whole thing. And most of it was fear for what 2025 will be bring to the both of us. We still have so much to look forward to and the diary is still jammed however, we are now waiting for a huge and disruptive amount of work to be done on the house. It will be lovely when it is done and will allow David to live very comfortably downstairs in his own custom bedroom with wet room but I am dreading the actual work being done. And that is just the practical hurdle. This year can and will deliver any number of challenges including the use of non-invasive ventilation to help with breathing, tube feeding and of course, deterioration of mobility and motor function. This always seemed like a ‘next year’ problem, but now it is next year, and it is coming. I have no doubt we will face it all with our usual bravado with the occasional meltdown thrown in for good measure but for now, David is still walking, talking and cooking the dinner so we need to be thankful too.
While we are on the subject of David cooking…we are in a routine now where the time I get home from work and while David is preparing dinner is usually my ‘downtime’ (aka candy crush time) so he can be reluctant to ask for my help for fear of disturbing me despite me reassuring him numerous times that I don’t mind helping but a mixture of his stubbornness and reluctance to call me really came to a head this week. David had spent lots of time preparing a delicious macaroni cheeze which he now does from his perching stool in the kitchen. He called me in to help grate some cheeze and add the tomatoes before putting it back into the oven for 10 minutes. I settle down for another couple of levels when I hear an almighty smashing noise followed by a string of expletives. Running into the kitchen, I find the floor covered in broken glass and pasta splattered all up the cupboards and under the cooker. And I am angry. Not about the mess, not about the food but that David hadn’t asked for my help lifting the heavy dish out of the oven. And he is angry too – with himself. He shuffles off and I clean up the mess before regrouping to talk about what had happened but neither of us are in the mood. David is disappointed and upset and we are both starving hungry. He goes up to bed with no dinner and I heat something up in the microwave. We talked about it later when we had both calmed down and I re-iterated that I am here to help him. I can only imagine how desperately frustrating this must be for him.
Onto our usual run chat and lots of report – firstly the Christmas period offers the unique opportunity to cram 4 parkruns into 10 days and we were up bright and early for a new years day parkrun. Unfortunately, I was a little under the weather myself so David was pushed round by our friend Jon, while Olena took control of his faithful doggy companion Jasper.
Fast forward 3 days later and we are back to our usual Saturday morning event. This time, we spotted Andy, an anaesthetist from work, who has previously had a go at pushing David and he was keen for another go at beating his previous time. While I picked up a pacing vest and trotted round, Andy and David absolutely flew round to an impressive time of 26 minutes! The Bakermobile has never travelled so fast but David assured me he felt in safe hands and they both had a great time. Due to the arctic conditions, we wrapped David up with his heated clothing (thanks Penny!) and he was quite snuggly under the buggy cosy.
My parents bought us a mini camera for Christmas that we can attach to the buggy to film some of our runs and we are looking forward to trying it out soon.
I haven’t been pushing David much recently, mostly due to various illnesses and injury but I will soon need to get into shape as we have a few races coming up, the biggest of which is the ABP Southampton 10k. We were approached by the Southampton Hospital Charity as they had been looking for an assisted duo to take part in the race and represent the charity and we were only too happy to oblige. Both David and I spent many years working at UHS (16 years for David, nearly 26 for me) so it’s a charity close to our hearts and they do fantastic work improving facilities for patients and staff. In return for entry, they have asked us to do a little promotional work for them which of course, we are happy to do. I was then asked by the race director if we would also do some promotion for the actual event which we have just started to do with them. We never turn down the opportunity to promote inclusion in races for assisted runners!
And speaking of getting our story out there, last year, we were interviewed for a podcast called ‘The Arts Show’ which aired this week. It is available on Spotify and YouTube and whilst no-one likes listening to their own voice, I enjoyed hearing the interview back. Dane the host asked all the right kinds of questions about MND, running and how we cope with life and I hope we were both able to put across to listeners that David is still living a good life.
You can watch it back here:
https://youtu.be/RLkZU1-4Wf0?si=yvzJh7yAZSXM3k5I
As David reported in the last blog, he has now had two small falls at home. He has continuously been pushing his goals of when he wants to still be walking by but conceded he might need to give up now he had made it to the end of 2024 and he felt it was time for a full-time wheelchair. We are very lucky in our area in that, if we need something, services are only a quick phone call away. David rang the physio to ask them to come out to the house to do some more assessments on how he can be safer at home and they visited on Thursday. They watched him walking and checked his strength and actually delivered the news that full-time wheelchair use is still a way off and instead will visit again with some splints to try. As your leg and ankle muscles weaken, it is easier to drag and trip over your own feet so they hope splints will help with this. They did ask David if he was still managing to exercise but he admitted, he doesn’t. Simple tasks such as getting dressed are exhausting and makes him feel out of breath and tiredness is a real issue for him (and one of the reasons he goes to bed so early). We have quite a few medical visits and appointments coming up over the next few weeks, including the OT coming out to assess and measure David for a rise/recline chair.
Saturday morning bought with it a frosty -3° parkrun and I pushed David this time. I had a couple of quick walk breaks and I had to take it very easy on the ice as I could feel my feet slipping at times but was pleased to finish just over 32 minutes. We enjoyed chatting to our friends and other runners and as usual, had lots of encouragement on the way round with people calling out our names. I just love it!
We then came home to a lovely gift in the post from the Mark Sommerville Foundation. They had gifted David a box of useful aids/gadgets and we're at the stage where they will definitely come in handy.
Recently I was chatting with my lovely friend Charlotte and confiding that things can feel quite tough at times. Charlotte is a meditation teacher and she invited us to one of her sound baths / cacao ceremonies as her guests which was so kind of her and we were very excited for the experience. I have previously attended one of her meditation courses and a couple of sound baths and I just knew that David would absolutely love it.
We settled down on our mats to drink the cacao before Charlotte bathed us in sound with her crystal bowls and drumming. David had no idea what to expect but on the way home said how impressed he was. If you've never tried it, I highly recommend it. Charlotte has been a great friend to me, especially since David's diagnosis and I'm grateful for her.
So what has Teddy been up to? Well, we haven’t shut him in any rooms or drawers recently although we did discover he has a real hatred of Fin’s hairdryer – not when it is turned on, just the actual hairdryer itself! David is still keen to do jigsaws while his fine motor skills still allow it and as predicted, Teddy was instantly all over it. Doing jigsaws is a nice way for us to spend time together without the TV on and we listen to music, talk and sing. However, Teddy is obsessed with our jigsaws and proceeded to jump up and immediately curl up in the box, putting a stop to play.
Luckily, I had made myself and David some vegan snowballs to drink so we supped our drinks, totally bemused as to how to continue as experience tells us, if we try and move Ted from his comfortable position, we are likely to get swiped. In the end, I lured him out the room with treats and promptly shut the door on him – sorry Teddy! We don’t know much about Teddy’s history apart from him living in a flat where there were young children, so he didn’t come to us as the instant lap cat we were hoping for but we are making progress with him. Whilst he is on good terms with me, he still takes the occasional swipe or nips David, mostly after a period of petting and he then he will turn on you. He also bit David’s physio this week which is embarrassing! However, I have had a few breakthroughs with Ted recently where he has come to sit not on me, but right next to me, and a couple of times now, he has let me brush him to the point he has gone into a trance and started to ‘make biscuits’ – something he never did when he first came to us so I guess he is slowly but surely letting his guard down?
Love ❤️ to you both xx mave
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