03/06/2026 - 'Alice's ramblings' by Alice

David has lost his writing mojo.  Every time I ask him about the blog, he just says he hasn’t felt like putting it together, but I know lots of you follow our journey, so I thought I’d take to the reins for this update to give David some time off.

We have had a few big events happen in our lives recently – having carers start, our new powered transfer aid, the Leeds marathon and going on a cruise. 

Let’s start with the carers.  This all started quite unexpectedly to be honest.  I had been trying to juggle caring for David while still working at the hospital and taking care of the house.  In order to do this, I was getting up early myself and then getting David up.  This involved transferring from bed to bathroom for morning care, dressing, transferring into the living room, doing food prep for the day and then setting up him with breakfast and everything he needed for the day before setting off to work at 10am for 6 hours.  After work was usually shopping, cooking, taking care of anything David needed, sometimes showering him, cleaning the house etc and it was getting too much for me.  Not to mention, David was on his own at home for long periods of time and was losing ability to transfer independently into his powerchair so every time he needed the bathroom in the daytime, it was getting dangerous.  We were already on the amber list for an adult social care assessment from social services, and this had recently been moved up to the red category by our hospice OT, but we were still waiting for their input with no timeline of when this would happen.  When we were asked about how we were managing at our last neuro appt, the doctor and MND care co-ordinator were understandably concerned for the both of us and put in an urgent request for NHS home care.  This free service runs for 7 days but is a good way of kick-starting social services as once care has been initiated in some form, they have a duty of care to take it over.

We were then visited by our case worker who went over everything we needed social care service to provide and settled on an hour visit in the morning to get David up and out of bed, dressed and settled for the day, plus 45 minutes at lunch time to sort his food, make him a coffee and transfer him the toilet.  They also agreed to a shower twice a week and a shave twice a week.

In the meantime, I had an extensive financial assessment to complete as the cost of this care is £360 a week and this is individually means tested.  I spent a huge amount of time completing the online forms – having to calculate and document every penny in and out of our account including pension, benefits, council tax, utilities, podiatry, insurances – the list was extensive.  I was relieved to get to the end of the form and press submit, only to be faced with a further portal to then upload all the evidence!  I had to rummage through all our documents to scan in P60s, passport, deeds to the house, PIP letters, evidence that we used more water and heating due to the MND, even some handwritten podiatry receipts.  It was a tense wait to find out how much we would have to contribute, but we were very relieved to finally receive their decision – the care would be free to us. 

So, we have had carers in for about a month now and it has been going well so far.  David has got to know his key carers, and he has a good rapport with the male workers as they can chat about the football.  It is peace of mind for me – I am able to log into the ‘Birdie’ account in the mornings and check they have been in and that David is safely up and out of bed.  It also means David is not left alone to independently transfer in the daytime as this is now too dangerous.  And he can get a hot cup of coffee freshly made for him at lunch time, instead of trying (and failing) to pour one from a flask I had left out.

Now we have the carers in to take care of the morning shift, it also meant I could change my hours back at work to 4 days a week with a day off.  Although it is the same number of hours, doing them over 4 days instead of 5 and having a day off feels like a luxury and a much-needed break. 

We both felt a mixture of emotions having carers in – mostly a bit flat to be honest.  For David, he says it makes him feel old, like he is losing control and independence.  For me, I feel terrible guilt and that I am letting David down.  I wanted to do it all myself, but I had to cave in and admit it was too hard.  Maybe I wasn’t the superwoman I thought I was.  And then I felt guilty about feeling relieved.  Giving David a shower really is a 2-man job which after being at work all day, felt like a huge task.  Knowing the carers were going to do it felt like a weight off my shoulders, and with that feeling, came the guilt.

I have to remind myself that we are nearly 3 years post-diagnosis and I really tried to manage everything by myself for a long time, but us carers also need to be looked after.  Plus, I still take care of David after work, do all the weekend routines and I still prep all the snack plates and lunches, so the carers only have to put it out.  One time outside the house, the care manager told me David has the nicest lunches in Southampton!

So, we knew we would happen eventually and I think we have got used to it now.  Having strangers coming in and out the house at random times can be difficult but there are a few bonuses too – one of which is that the carers will do any washing up I leave out and the other day, they even hung the washing out on the line.  Unfortunately, by the time I got home, it had started raining but the thought was there!

Whilst we are on the topic of caring and the physical side of things, we had a powered standing aid delivered a couple of weeks ago.  The OT came out to show us how to use it and we really weren’t impressed to start with however, giving it a few more tries, we came round to it.  It comes with quite a large sling/belt which hooks onto a frame which lifts David to standing without the need for me or a carer to lift David ourselves with the handling belt.  Whilst it is a good level up from our trusty Sara Steady, it is not without drawbacks… you cannot transfer around the house with it, so it means additional transfers in and out the power chair.  For now, the carers are still using the Sara Steady, and I do a combo of both, depending on where we need David to be.  This seems to be working for now and we hope it will stave off the use for a hoist for a while longer.

You may remember we were recently invited to be a panel of an MND conference in London for professionals wanting to conduct research studies and how best to interact with the participants.  Well, off the back of this, we were both contacted to ask if we would like to be interviewed for a study about an AI prediction tool for MND.  This was quite fascinating, and I spent nearly 2 hours talking to the researcher about it.  The tool has been developed from assessing all the MND cases in Scandinavia, plus some cases in the USA and looking at when the patients needed to have a PEG placed.  Based on this information, an AI model has been created which can try and predict when a person should have the PEG procedure.  This was of particular interest to us as we know David had his placed far too early – in fact, a year has passed since its insertion, and he still has had no need for one.  There were lots of questions about whether we would want this information, when best to receive it and how the information should be delivered.  We were both happy to give our experiences, and even more delighted to receive an unexpected Amazon gift voucher for our time!

So of course, I am sure you must all know that #teambaker (but minus OG member Martin) completed the Leeds marathon on 10^th May.  The whole weekend started with the question of how I would manage to carry all the luggage plus the running chair on the bus and train but of course, in steps our mate Andy to save the day.  He left his car at our house so he could catch the bus with us – carrying the frame of the buggy and his suitcase while I carried the wheels, our bags and David’s powerchair charger.  It was heavy going but the journey was pretty smooth (although Andy will tell you I was pretty red-faced at times!).  Due to a busy train, we got a free upgrade to First Class and were served coffees and snacks. 

Saturday morning of course, started with a Leeds parkrun and David had already been in contact with the local vegan runners who kindly changed their plans so they could meet us.  We headed to Woodhouse Moor in the rain and to save our legs, David was in his powerchair.  Despite it being in parkrun guidance that it is acceptable to complete the course in a power chair if you are permanently disabled, David had always been in his running chair, so this was a new thing for him.  We introduced ourselves to the RD and explained all this and she was so kind, shrugged and just said ‘everyone is welcome here’ with a big smile.  David zipped around, chatting to the other walkers and the rain mostly abated for us.  We even met a lady who told us she was running the half and then would be at the finish line handing out the marathon medals.

We then had to dash off as we had another event to attend – the MND mile.  This was a pre-marathon shakeout for all abilities – and it was a chance to meet all the MNDA volunteers and of course, Kevin Sinfield.  He was very gracious and was happy to chat with everyone and pose for photos.  It was nice to finally get to meet this amazing man who has put himself through the toughest challenges for the MND community.

Back at the hotel and the three of us are sitting round chatting when David announces he wants to have a bath.  He used to love baths so much and it is now impossible in our house.  The accessible hotel room has a lowered bath, and he gets the idea into his head that Andy and I can lift him in and out.  It was a real test of friendship but of course, Andy was happy to help.  Between the two of us, we managed to lift David in and out of the bath, with Andy looking at the wall the whole time.  We found a nearby vegan Chinese takeaway and ordered it to the room where we had a pre-marathon feast while watching TV and having a giggle.  Andy then presents David with a Leeds charity shirt as a gift for the weekend – he really is a top guy!

Marathon day soon dawns, and I am a bundle of nerves – the usual lack of training but also an added knee injury which I have taped and medicated is overriding the excitement.  I tell David my concerns and promise to run as far as a I can, but secretly I have huge doubts over the stability of my knee and fear I won’t get further than 5k.

We walk to the stadium where the marathon is starting, along with hundreds of other participants and the atmosphere is buzzing.  I have borrowed my friend’s 360 camera in the hope of capturing some good footage for a vlog.  First up, we bump into Natalie and the kids – we are thrilled to see Ewan, and we give him a big squeeze and Madi has made us personalised bracelets to wear.  Then we meet Anna and the team is reunited!

They really look after us in the stadium, locking away David’s powerchair and showing us where the facilities are.   We were so happy to finally meet Matt Cox (who borrowed the Bakermobile for London), #teamhasler, who I had been chatting to on Instagram, and we met John who was taking part in Rob Burrow’s running chair.  And of course, OG team member Martin was at the start to give all the chairs the once over and make any last-minute tweaks and adjustments.

We had our own MND wave with 9 wheelchair participants and their teams starting together.  It was very emotional listening to the announcements on the Tannoy and being with all the MND warriors and their loved ones.  Some teams had over 20 ‘pushers’ while we were just a band 3 and Matt just had his cousin Stewart at the start.  We were counted down and then we all shot off to roars of encouragement from everyone and we hit the first corner where there were crowds of spectators cheering us all on.

We soon settled into a nice rhythm and pace, the usual banter was flowing, and my knee was holding up well.  We started in the town but after a few miles, headed into the countryside.  There were beautiful scenes, and it was actually quiet!  It was a real contrast to the hubbub of the town, and the peace was welcomed.  We enjoyed quite a few miles on lovely wide roads with rolling hills and at times,  very few other runners to navigate – a real contrast to a packed London marathon.  We know there is a dreaded 3-mile uphill section to come, and Andy is first up to take over pushing duties.  It takes about a mile in to realise this is part of his cunning plan to take all the glory for doing all the uphill sections – and I even caught his admission on camera! We know that not far after the hill, we will be back into the town where our support squad, made up of Jake, Rachel, Max, Donna, and Mark is waiting.  Anna is desperate for a hug and some encouragement from her boyfriend and the tears were flowing!  But it was just the boost she needed for the last few miles.

 

Leeds marathon was a gorgeous event, and we enjoyed chatting to all the other runners – they gave us so much love and encouragement and we heard lots of emotional stories of why people were running for the MNDA.  It was also a tough course with quite a few hills to navigate but we knew the finish line was coming up and we dug in for the last mile.  Soon, we could see the stadium floodlights and the music blasting, and we knew we had done it!  We entered the stadium and ran along on the carpet and crossed the same finish line where Kev had picked Rob up out of his wheelchair back in 2023.  Our support squad were in the stands cheering us in and we crossed the line in 6:02 – a 37-minute improvement on our London time! 

Anna had completed her 2^nd marathon, both of which she had pushed her dad round, and we were so proud of her.  And true enough, our new friend from parkrun was there to give us our medals.  Exhausted, we headed back to the hotel and ordered another Chinese takeaway!

You can view our marathon vlog here:

Marathon vlog

Just a few days later, we met Kevin Sinfield again at Central Hall in Southampton where he was giving a talk.  There were lots of familiar faces there including members of the local branch and even the IOW branch who had made a trip over to see him talk.  I was pleased to see Jackie there, who had recently lost her husband to MND and hear how life had been for her.  There is always that unspoken connection that you have with the partners – you know, and they know what you are going through and what is coming and she gave me the biggest hug – we didn’t need to say anything else about the situation we share.

We had VIP tickets to the event so were able to meet Kev again and have more photos with him.  He even remembered us from Leeds which meant a lot and he was happy to sign David's marathon top. 

He spoke about his rugby career, his training for his challenges and of course, his friendship with Rob.  I was also delighted to hear him announce he was determined to come and run in Southampton. 

Speaking of friendships, we are so blessed to be part of such a supportive community.  A couple of weeks ago, I could see the carers had been in, but I had not heard from David all morning and his phone was offline.  I started to get really worried after my messages and phone calls went unanswered as this was really unusual.  A random thought occurred to check my Alexa app and sure enough, there was a message on there for me.

What David actually says at the end is ‘shit shit shit’ which Alexa had simply changed to ‘ship’ and the typed message also doesn’t convey the anger and frustration I could hear in his voice recording.  Unable to leave work, I sent a quick message to our community chat asking if anyone was nearby and free to pop in and straight away and our friend Anja offered to go round in the next 10 minutes and check on him.  Turned out, his phone had slipped down the side of the chair, and he just didn’t have the strength to retrieve it.  She stayed to chat with him for a while and made sure he had everything he needed before heading back to work.  Thank you, Anja!    

We have also been offered some prepared meals a few times from our mate Claire, and also John P – a vegan chef who caters for events and quite often, has some leftovers to gift.  He has recently dropped round quite a bit of buffet food and even some tiramisu which is gratefully received.  He often brings his son Fox with him who is around 9 years old.  Fox has taken a great interest in all of Dave’s gadgets and aids and even had a go on the magic toilet!  I once put Fox in the standing aid too so he could see how it felt, and he has also had a go steering David’s power chair.  It has been really good to educate and normalise disability to a younger person and hopefully, he will feel more knowledgeable about MND and what life is like for a disabled person now.  

We also celebrated Jasper the dog’s birthday with a party at his hooman’s house (Jon). 

Following MVT parkrun (where David wore his marathon medal), we headed back to Jon’s and contemplated whether or not to put David into the wheelchair to get him inside or whether we could just carry him in as we were surrounded by some strapping men – and we decided on using the strapping men!  Supported with a moving belt and 4 people holding him up and me moving his legs, we managed to walk David across the driveway and into the house.  David hasn’t been able to walk for nearly a year now so it must have felt strange for him, but he says it was a nice treat to be upright again.

Plus, Jon had made vegan custard creams which I hear were delicious.

We have a few fabulous people who are continuing to raise funds for the MNDA with some big challenges

First up is Holly – at just 14 years old, she is currently doing her bronze Duke of Edinburgh award and is walking 30,000 steps a week.  She set herself the challenge of raising £300 for the MNDA and is just £15 away from smashing her target.

Donate to Support lifesaving research towards Motor Neurone Disease , organized by Holly Nash

Next, we have Olena who raising £600 in honour of David recently turning 60 – and she is running 60 miles at the Race to the King event on 20^th June (well, 62 miles).  David and I completed the 50k event ourselves in 2022 and even then, I finished an hour in front of him which was one of the first warning signs of the MND (as he was always a better runner than me).

Olena's fundraiser for Motor Neurone Disease Association

Another vegan runner is taking on 100k this month (62 miles) in honour of David turning 60. Lovely Layla is raising money for Challenging MND - the charity who helped us buy David's running chair by giving us a very large grant, and we were lucky enough to meet Alex the founder at the London Marathon last year. I'm not sure what event Layla is actually running though but I know she'll smash it!

Layla's fundraiser

And finally, our good friend Matthew is in training to walk 32 miles, following the Itchen Navigation trail.  He will be raising funds for the MNDA and also Cancer Research UK.  He doesn’t have a set date for this adventure yet but will be shaving his head the day before to show support for this who lose their hair during chemotherapy.  I know both charities are very close to his heart right now so we will share his fundraising page when it has been finalised. 

What beautiful people we have in our lives!

Well, that is all the big stuff (apart from the cruise) – so what else?  Well, we celebrated our 9^th wedding anniversary, Teddy went through a ‘bird’ stage which thankfully seems to be over, we stayed up late to watch the Eurovision song contest, ate a blue burger at Thrive and did some mindfulness breath work at the MNDA support group. 

We had a fabulous time on our cruise to France and Spain, and I have been busy doing a vlog to show what we got up to and how we managed which should hopefully be finished soon.  Maybe David will get his writing mojo back again soon, and maybe he wont but either way, that’s ok.  And if he doesn't, you'll have to put up with my ramblings instead!