01/10/2026 - '4 months since our last update' by Alice

The last post in this blog was the beginning of June, so it has been four months since we last updated you all.  I wrote the last post as David was feeling jaded about it, and unfortunately that hasn't changed.  I was also a bit ‘meh’ about it, but I have been watching Kevin Sinfield complete his final challenge and considered how he is still out there raising funds and awareness for the MND community and this is what we set out to do too when David was first diagnosed.  We have a large following and readers all over the globe and whilst we don’t owe it to anyone, we did always say we wanted to document this journey.  The consequence of leaving it this long though, is that this blog is going to feel long and probably quite gloomy.  I have started it off with an incident of me ‘dropping’ David on the floor this week, and unfortunately, it doesn’t really get much better after.

The blog was once an outlet, but then David began to feel it had become repetitive and boring for readers. Football trips, gigs, parkruns and the everyday moments that brought us joy were nice content, but they all felt a bit samey to him. Then combine that with disease progression, and the decline in his creative drive became proportionate to the increase in life's difficulties.

But I do feel there is a real risk that by not sharing the truth of our lives, we create the impression that everything is carrying on as normal. I'm afraid that is no longer the case.

Seeing David well presented in his wheelchair and speaking with a strong voice is not an accurate reflection of the realities, limitations, losses, and daily impact his disease has on us both. We have come to realise that people can mistake visibility for severity; what is seen in brief moments often bears little resemblance to the challenges we face at home and in every day life.

A classic example of this – I have recently hurt my back lifting David.  My back has always been on the fragile side and an MRI scan in 2024 showed a bulging disc.  This got better in time, but it was inevitable that something was going to go wrong while doing a transfer at some point.  Unfortunately, and very disappointingly for us, this came right before we were due to take part in the Cardiff half marathon this weekend.  This race is classed as a ‘super half’ and is a ballot only entry with no late deferral process.  David was very lucky to get into this race, and we were really looking forward to it.  However, with a bad back and hobbling about on anti-inflammatories, taking part in a half marathon is totally unrealistic.  And not just the running/pushing side of it but also looking after David on my own in a hotel for 3 nights would be impossible.  At the time we entered, we hoped it could be done, but as the race drew closer, we had to face the hard reality that, without help, it was simply too much for us.

Just a couple of days after withdrawing from the race, we were alone in the house and needing to transfer David into his wheelchair for bedtime and as I stood him up, his legs gave out at the exact same time I felt a pull in my already injured back.  David slid to the floor and after making sure he was uninjured and safe on the tiles, we wondered how on earth we would get out of this situation.  We went through a list of people we could ring, and even considered trying the neighbours but decided that, as the sofa was low, we might be able to get him up there first.  So, with my bad back, and David’s non-existent strength and a lot of heaving and pulling, we managed to get him up onto the sofa and after a rest, managed to repeat the process back into his wheelchair.  After David was safely in bed, I stood in the kitchen upset not only by the pain in my back, but also by the scare it had given us both.  As I am already on anti-inflammatories and painkillers, hopefully it will get better.  But it has now put a halt to my yoga and Hyrox training which were the two things I had for myself – so very disappointing.

And as well as MND, it seems David now has kidney stones to deal with.  He has been passing tiny ones like sand for a while now but in the last month, has passed 4 – one of which was particularly large (we have it in a jar 😅) and the last one being quite painful.  There is a very real risk that there are more in there to come so he was sent for a barrage of blood tests and an urgent CT scan.  We turned up to a 7.30am scan appointment this week, only to recognise the first radiographer from our time working in angio and then the second radiographer recognising us – ‘oh, I’ve seen you guys at parkrun and I’ve watched your videos’.  This was an unexpectedly nice start to the scan appointment.  David has already had a message from the GP surgery saying they need to call him to discuss some results so who knows what that will potentially entail…watch this space.

So now I am going to update you on David’s MND and also what we have been up to.  It is also important for us to document what has been happening and at what speed for our own record.  I look back on last year’s blogs and read about how hard we thought things were and it’s actually laughable compared to where we are now.  And I am sure the same sentiment will apply next year too.

So, let’s break it down into sections and start with the real grit – the physical and mental effects of motor neurone disease over the last four months.

Progression has been both undeniable and difficult.

Recently, a good friend of ours asked David how far through this journey he thinks he is.  It was a great question and although confronting, really did make us think.  We both agreed we think just over halfway through now – working on a scale of 0 being pre-diagnosis and 10 being the end, we put the number at a 5-6.  This would actually give David another 3 years if our prediction is accurate so whilst it may be sad or shocking to read this number, actually lasting 6 years with MND is far more than the predicted 2-5 you are sent home from the clinic with.  And if it is even longer, all the better.

Starting with a positive… David’s voice is still strong, albeit with its usual croak.  He may have to work a little harder to project in crowds but so far, no slurring. 

It is still mostly positive news on the swallowing but there are some troubling symptoms starting; mainly having to cough or clear his throat while eating as not always fully swallowing, but no choking episodes.  The subject of a PEG has been brought up again by David’s team who have raised concerns, but I think we’re firm on the decision of going for a RIG when needed.  He still has frequent input from the speech and language team who monitor his speech and swallow regularly.  And more reassuringly, we managed to get David into a weighing seat at this last clinic appointment and not only has he put weight on, but he is also now heavier than he was pre-diagnosis! 

We have attended a few respiratory appointments since the last blog and results from tests performed at these clinics have shown that muscles used for breathing have become weaker over time, which is now affecting David’s breathing at night.  On his last sleep study, his average overnight oxygen saturation was 88%, indicating that oxygen levels were low for a significant portion of the night due to hypoventilation from weakened respiratory muscles.  Tests of breathing muscle strength, both inhalation and exhalation, also show deterioration - peak cough flow has worsened and SNIP (a measure of breathing in muscle strength) was well below the expected range for a man of David's age and was consistent with weakened breathing muscles.  His blood gas results show that daytime breathing is still being maintained overall, although his raised bicarbonate levels could indicate that periods of under-breathing from weakened respiratory muscles, particularly overnight, have been occurring long enough for the kidneys to start compensating.  He is under strict instructions to his CPAP machine for at least 6-8 hours overnight for now but looks like we may be moving to BiPAP at the next visit.

Unfortunately, his legs have all but packed up now.  We looked at some photos from this time last year and David could still stand on his own and even take a few steps with help.  Now, he is completely immobile and has gone from transferring independently, to needing the help of one person, and now two.  This has become problematic in the house as I can no longer assist David to transfer on my own – this is mostly due to him not being able to pick his feet up to move position so once I get him into standing position, we are basically stuck like that unless I try and push his legs with my feet and that really isn’t working anymore.  Last week for the first ever time, I had to call upon my son Fin to help me.  I stood David up from his wheelchair and held him while Fin had to lift his legs to manoeuvre him round so I could sit him down on the bed.  I’ve not tried for a while now but it’s safe to assume I can no longer safely get him in and out of our car without help either.

His hands and arms are very weak now.  David has to conduct all his phone calls on speaker phone as he cannot hold the phone anywhere close to his ear.  He also uses speech to text which types out his messages – and that comes up with some funny suggestions sometimes.  He recently text me to tell me about being lathered up in the shower which came out as larva, but I got the gist.  He is still managing with his mobile arm support to eat at home but gets tired quickly and often relies on someone else to feed him when out and about.  We do think the carers will have to start feeding him his lunch soon.  We have had many a dropped or broken plate and you could make a whole meal out of the crisps and nuts I find under his chair, but one of the worst incidents was when he dropped a full urine bottle… thank goodness for tiled floors.

Equipment wise, we now use (in different combinations) a handling belt, Sara steady and a powered standing aid.  We also had a shower chair dropped round to us which was promptly returned a week later, mostly due to us already having a built-in shower chair but also just the sheer number of gadgets and aids makes finding room for everything challenging.  Whilst the Sara steady has been our most trusted aid, it is now getting too difficult for us to lift David into it.  The powered standing aid takes over this part but then comes with its own pitfalls – it is too heavy to push anywhere once David is in it and also, he doesn’t feel safe in it and there is a very real risk he will slip out the sling if his legs give way.  When we had the extension built, electrics were put in place to facilitate a ceiling track hoist, and we have now requested with our OT that this is installed.  This will solve a lot of problems – it can be operated by one person with no lifting…. But there are still a few logistical issues to navigate such as getting David into his front room recliner for the day.  So, we are in the process of arranging a visit to the hospice to see our lovely OT to work it all out and a referral has been made to the community team to assess for the hoist.

Unless his carers put David into his powerchair to go out for the day, he spends his entire day in his recliner in the front room and once he's in it, he can't move without help. Luckily, he's still got plenty to do - watching TV and sports, reading, listening to music or the radio and sometimes, writing.  He assures me he doesn't get bored and the carers visiting breaks up his day. 

It was hard for both of us to accept carers into our home.  Both of us struggled with the concept for different reasons with me feeling guilty and a loss of control and David feeling helpless and dependent.  But from the time they started in May/June to now, we simply could not cope without them.  And looking back, I am not sure how I was managing without their help for so long.  Their input allows me to go to work, safe in the knowledge David has regular visits throughout the day – getting him up, showering him, preparing his lunch and his many coffees and taking him to the toilet.  Best part for me?  They do my washing up and even empty the bins, which I can tell you is a real treat.  Finding the motivation for housework can be a real chore sometimes but I was really pleased last week when David relayed to me that one of the carers told him that she liked coming to our house because ‘it’s clean and smells nice’.  A few simple words that really boosted me.

But while they are great in the daytime, it still leaves me on my own to take care of David every evening and weekends and I have finally had to give in and admit, it is getting too hard for me.  The carers always lift and move David in pairs, when they are not there, it’s just me (or Fin helps if he’s in).  Not only is this physically demanding, but it is also getting dangerous.  So as much as we are unhappy about it, we had to put in a request for more care provision in the evenings.  We have just had this agreed by social services so now we will have carers come round to put David to bed.  This was one of the hardest things for me to accept, as it challenged my long-held belief that I am, in fact, superwoman.  Unfortunately, we could only get a 7-8pm slot which means a very early bedtime and secretly, I think David has engineered this on purpose to get out of watching Eastenders with me!  Seriously though, he doesn’t mind as he likes to go to bed early anyway and with winter approaching, it means he can get cozy in bed with heated blanket and his feet up and watch as much sport as he likes. 

We still have input from multiple different hospital teams, but what has been consistent since diagnosis are our appointments with the neurology team. However, at David’s last appointment, we found out we have been moved from neurology to neuro rehab.  This essentially means that David’s neurologist has conceded that there is nothing he can do or offer so there is little point in seeing him anymore and we do totally understand this.  His job is to see new patients with red flag symptoms, offer a pathway to diagnosis and then deal with the immediate fallout of this.  It is clear to see how his time is better used doing this than seeing David every 3 months and then having nothing new to say.  The rehab consultant was very nice though and went through everything to make sure there wasn’t anything extra that could be done to help.  We have always been extremely well supported by hospital and community services.

We both enjoyed the long, hot summer but with the cooler and darker days comes melancholy and every day starts to feel like one relentless grind interspersed with the occasional treat.  I am frequently asked how David is by people who knew or worked with him, and I find myself stepping away from ‘cheerful as usual’ to ‘not so good at the moment’.  It is hard to find the balance of honesty, while not wanting people to feel uncomfortable.  But both of us have been low - things we used to have a passion for such as vlogging, charity events and just going out in general seem to have been replaced with endless nights in front of the TV and not much else.  It is hard to see the positives when I feel like David is fading away in front of me and we both feel frustrations – David at not being able to do anything for himself and me feeling like I have to do everything with not much help.  For me, it’s an endless cycle of trying to keep things going at work, housework, shopping and caring while David has had to succumb to being showered by carers, having to pee into a bottle in the front room and barely being able to get food into his mouth anymore. 

It has also been hard for us to find the right balance of trying to care for each other.  David hears me clattering in the kitchen in the mornings trying to prepare a nice breakfast and lunch for him.  I want him to enjoy nice food while he can, but he wants to make my life as easy as possible so says ‘just leave out a can of soup for the carers to heat’.  Whilst I appreciate he is trying to take the pressure off me having to do food prep in the mornings, it then makes me feel as though he doesn't realise how much I want to do those things for him.  So, in trying to help each other out, we get into a lose-lose situation.

BUT all that being said, we do still find joy and our diary is still just as full of things to look forward to – we just have to look a bit harder these days for things to smile about.

We’re lucky to be surrounded by a good tribe.  From friends coming over for a beer to visiting David at home with their kids to chefs dropping off food, Tour de France enthusiasts coming round to watch the cycling and friends accompanying David for a cutthroat shave (his new favourite treat since his first ever one on his 60^th birthday!).

We’ve been treated to gigs including seeing Paul Weller, a surprise trip to Wales with gifted hotel stay and meal, and David being taken to local gigs at the 1865 by his brother and many a football match too.  David has also enjoyed lots of time on the Island visiting his favourite coffee shop Sounds and Grounds, a day out on the steam railway, a trip to Sandown to see the Wildheart bears and recording a football podcast with his friends from childhood, Dee and Adam - you can watch it back here:

YouTube link

And then to my friends who not only listen to my 10-minute ranting voice notes but also pick up on my radio silence too.  My work team are also understanding of the black cloud that hangs over my desk most mornings and my manager generously dedicates our monthly one-to-ones to what can only be described as an informal counselling session, with a brief five-minute discussion about work squeezed in at the end.

We also appreciate and are thankful to the people who check in on us, ask how we are doing and actually want to hear the truth, those who ask the hard questions about his MND and those who actually care about the answers.

Please know we are deeply grateful to those who continue to show up for us time and time again, and disappointed in equal measure by those who should, but do not.

Now away from the heavy stuff and back to some usual blog content.

We’re still running together as much as we can and recently completed the London Big Half – we would really recommend this race to anyone who has ever tried to get into the London Marathon.  It has the same party atmosphere, many of the same landmarks (in reverse) and only half the distance to run!  Whilst the finish line might not be at The Mall, it is at the Cutty Sark and felt very special.  The amount of love we got on the way round really blew us away.

Our big running news is that we have secured a space for #teambaker at the Manchester Marathon in 2027.  We have also been offered Brighton, which is a week apart, which David considers to be no big deal, but his teammates are still considering if this is a viable idea or not!

And of course, we are still parkrunning, revisiting Basingstoke and Medina, while adding new locations including Highcliffe Beach, Weymouth, Mile End (where we were randomly recognised from a parkrun vlog) and the fantastic Severn Bridge. 

Severn Bridge parkrun is a unique opportunity to run from Wales into England and back again.  The meet up was a bit of a shock for David as although he was expecting a few friends to join us, 51 vegan runners from Hampshire, Wiltshire, Gloucestershire, Bristol, Wales and Worcestershire turned up to surprise him and run with us.  This was followed by a trip to the Queens Inn pub for fantastic food – thank you to all our friends and club members who came to this.

Closer to home, our friend Carlo, whose dad died of MND and who has since run 37 marathons dressed as Cookie Monster, fancied the challenge of pushing David to a sub-20 at Southampton parkrun.  Just to run a sub-20 on your own is dream territory for most of us mere mortals but Carlo was confident he could do it.  Starting right at the front, they shot off and as I came round the corner for the finishing straight, I could see the pair of them chatting away to the other runners with Carlo looking quite sweaty!  It was an anxious wait in the funnel to find out whether they'd done it but as I approached them, the smiles said it all – they had finished in 19:53!  Remarkably, David's fastest parkrun time is now quicker in his wheelchair than it ever was on his own two legs (21:16)

Whilst our personal fundraising has slowed down, some fantastic stuff has still been going on.  Firstly, the handcrafted guitar, lovingly built by our friend Carl was raffled off and the winner announced as Martin Davy, builder of running wheelchairs and one of the founding members of #teambaker.  This was particularly pleasing as Martin can actually play the guitar!  It took quite a while to get all of us together, but when we finally did, Martin turned up with an amp and treated us to a performance of his own song about Dolly Parton in the back garden.  Raffle ticket sales notched up an impressive £3000 for the MNDA – thank you to everyone who bought a ticket. 

Son-in-law Max organised another annual charity cricket match in Cowes – Northwood vs The Full Tossers (won by Northwood).  There were burgers, hotdogs and ice creams thanks to Plaza Ices for turning up with the van and also donating to the charity.  There was also a very popular ‘water or wine’ game and the total raised came in at £1115.  Thank you to everyone who played, watched or donated.

There are often people who take part in events and raise money in David’s name for the MNDA – David keeps detailed records of the names and amounts raised, but I don't have all that information to hand so apologies if I have left you off – certainly not intentionally.

Unfortunately, back in July, we attended the funeral of Fin’s grandmother Angeline Baker, a lovely lady who was always very kind to us.  By coincidence, one of the mourners was Angeline’s former employer John Caulcutt whose wife had also died from MND.  By further coincidence, he grew up and now lives on the Isle of Wight.  We got chatting and discovered that John is a music producer, stockbroker, businessman, charity fundraiser and CBE recipient, as well as being an all-round very nice man.

His previous projects include raising over £1 million in March 2020 for The Royal Marsden Cancer Charity through a music concert at the o2, providing temporary housing in India after the 2004 tsunami with Shelter Box and aid flights into Haiti after the earthquake and Iraq during the war. He also hosts an annual charity party on the island called The Towers and invited us to be his honoured guests.  Suffering from Parkinson’s himself, the party was raising money for both the MNDA and Parkinson’s UK and whilst the amount raised has not been announced yet, it did raise £120,000 the previous year so should be a large amount.

Matthew and Sam Sier completed the Sheffield 10k last weekend for the MNDA, raising over £500 and Daisy Meeking will be running the Chichester 12k this weekend and has already raised over £300. 

We were thrilled to be invited to be the face of the ‘Run 60 miles for the MNDA’ campaign in August – a challenge a few of David’s relatives had previously taken on.  We made 3 videos in total – one to wish everyone good luck, a halfway-through check in and a total raised announcement at the end (which at the time was over £200,000!).  We loved making the videos as it was a great way to promote assisted running and really helped to show the fundraisers how the money raised would help benefit people just like us.

You can watch the videos back here:

Run 60 miles in August video

And to our delight, two friends, Andy Barding and Dean Millar, also took part in the challenge.

And it is not just events that help the charity, I was recently contacted on Instagram by a lovely lady called Barbara whom I had sat next to for dinner on our cruise back in May.  She reached out as she wanted to make a donation in David’s name.  Despite the cruise being a few months ago, she told me she is still cheering us on from afar – how lovely is that!

David and I have benefited so much from the charity and recently, we were treated by the MNDA to a boat trip run by Wetwheels – a foundation that enables disabled people to enjoy a ride on an accessible powerboat. And not just as a passenger – they also let David take the wheel and steer us all!  We had a fabulous day out and they took us round Cowes and to Newtown Creek, even driving us up close past the Holmwood Hotel where we got married, which was lovely.

David was also given a grant to pay for a year's subscription to TNT Sports so he could enjoy watching The Tour de France.  It used to be free on ITV but this year, it moved to a paid channel and the MNDA approved a quality-of-life grant so he could keep watching it.  The tour might have finished, but he is still watching all the channel has to offer, including blind football.

Although our social channels have felt a little quieter (and after reading all this, I am sure you can appreciate why), we have still been doing what we can to raise awareness of MND.  I put together a video for Global MND Awareness Day showing David’s progression over the last couple of years.  It was hard to put together and a difficult watch, especially when paired with Anna's haunting vocals on 'Goodbye' by The Sundays. The video went on to get thousands of views and David was adamant that it was put out there, even if it made people feel sad or uncomfortable.

You can watch it back here:

MND awareness video

We were also featured in parkrun’s blog with an article titled “Wheelchair assisted duo: I push, he trusts!”.  This was shared across their social media channels, and we hope it helped to highlight that parkrun welcomes assisted runners and wheelchair participants.

parkrun article

David was also interviewed by the hospital's communications team to promote the appointment of Elena, the new MND specialist research nurse.  There is a disappointing lack of MND research at our hospital and Elena’s role is to bring in some new studies to the area.  We were pleased to meet up with Elena, as we had previously met her when David was doing respiratory testing for the MND Smart trial (which has now closed).  The interview has not been published yet but will hopefully be out soon.  Elena is also a fellow runner and since chatting with her, has committed to taking on Manchester Marathon and raising funds for the MNDA.  I have also challenged her to push David at parkrun.  We’ve not managed to make this happen yet – but it will!

I particularly enjoy Elena's Instagram page, where her cat, Professor Benito, educates the public about all things MND-related.

I think I may have taken you on something of a roller coaster in this edition of the blog, but there certainly was a lot to catch you up on! Of course, we've still managed to make time for some fun over the summer too. We picked one of the hottest days of the heatwave to visit Kew Gardens, completed the Southsea Mystery Guide, watched David acquire a new pair of Crocs complete with some questionable Jibbits, and I ran a marathon around Tesco!

And finally, the update you've all been waiting for: what has Teddy been up to? Well, he started his own Instagram account, which is very impressive for a cat. It's called @thetravelsofteddybaker and he enjoys keeping everyone updated on his adventures.

He's now sporting a GPS tracker, which has massively reduced the stress of wondering where he is all the time. As it turns out, he's usually just across the road sitting in some trees.

Lots of love,The Bakers x