29/07/2024 - 'One year on' by Alice

This week, it is my turn to be the chief documenter and I thought I was in for an easy ride as David basically did nothing for the first 3 days of the week.  MND is exhausting and David gets so tired, he needs a few days now and then to rest his legs and recharge his batteries.  But of course, nothing in our lives stays quiet for long so by Thursday, we were back to our usual hectic life!

First on the agenda was a family day out at Paulton’s Park.  This was kindly arranged and paid for by the local branch of the MNDA and offered as a way of spending some quality time together for families.  Rachel came over from the Island, Anna down from London and Fin just had to make it out of his teenage bedroom!

Unfortunately, despite the week’s radiant sunshine, we were not so lucky with the weather, but we were still determined to make the most of it.  Luckily, the poor forecast had kept lots of people away and we found the park to be very quiet.  But even if it had been busy, we were able to jump all the queues by using the accessible entrance and the staff were very accommodating with the wheelchair.  David has never been a fan of rides and rollercoasters, so I was surprised when he was keen to have a go on a few rides including a dinosaur coaster.  The rides all came with a warning that you need upper body strength to go on them so we remarked how these might be the last rollercoasters he ever goes on and he did a great job of facing his fears and actually enjoyed it – well, kind of!

We stopped for lunch during the worst of the rain and then all took turns pushing David round to see some of the animals.  David really suffers with the cold now and it was far chillier than we had anticipated but luckily, we had packed the lovely VR blanket, and we tucked him in all snuggly and he really loved feeling all cosy in the chair. 

David had previously suggested taking the rollator but later conceded there was no way he could have managed to walk around the park and was grateful to have the safety of the buggy.  A few selfies, one more quick go on the rollercoaster and then a stop off in the shop for a fridge magnet and we all bundled back into the car after a lovely family day.

Friday, we had a celebrity in the house!  David has been selling off some of the niche stuff he owns that no-one else seems to want.  He put out a call if anyone wanted to buy his Subbuteo collection and it just so happened that a friend of ours knew just the person and this person just happens to be a world champion Subbuteo player!  Jason Christopher has represented England, coached the under 20s at the world cup, is 5 times Solent league champion and has also been number 1 in the World Amateur Subbuteo Players Association rankings.  I’m afraid this doesn’t mean much to me, but David was very excited that he was coming round to the house to buy his collection and once Jason heard the profits would be donated to the MNDA, he generously gave over the asking price.  It must be difficult having to part with your prized possessions, but David was very happy they were going to a deserving home where they would be equally cherished.

David is selling lots more of his stuff off for the MNDA including retro annuals - enquire within!

 

That evening, we went out for a posh meal at The Ivy in Winchester to celebrate my mum’s 70th birthday and enjoyed a vegan Bloody Mary.

It was an early start Saturday for a weekend away at vegan campout!  We went last year just after David’s diagnosis and despite this fresh news and me not feeling well, we had a good time and were keen to go again.  Despite my intense dislike of camping, I wanted to go for the food and seeing our friends.  As most Saturdays usually do, it started with parkrun and there were over 300 vegan runners in attendance.

I was not able to get the wheelchair around the course, so I ran, and David volunteered scanning barcodes.  We had so many lovely people come over and talk to us, we felt like celebrities and lots of runners were sporting the Baker socks despite the heat!  Thank you to everyone who came over and spoke to us over the whole weekend, we love hearing about people reading the blog or just keeping up with our activities.  Knowing we have so much love and support out there (even if we don’t know you!), means the world to the both of us.

We then headed back to the campsite to check out the stalls and all the lovely food on offer.  Last year, David was able to walk around the festival site completely unaided but this year, he couldn’t walk for more than a few minutes, so we took the trusted Bakermobile and it was ideal for getting around in and handled the grass and fields far better than a conventional wheelchair.  I did however feel very tired from the effort of pushing David around all weekend.  I should stress that he is never a burden or a chore for me, but it does wear me out!

We volunteered to work on the vegan runner stall Saturday for an hour, chatting to festival goers about the club.  We had a few people say they weren’t fast enough runners, and we would say to them ‘David is in a wheelchair and still a cherished member of the club!’. 

 

Sunday morning was another early start as we volunteered at a local junior parkrun.  Hampshire vegan runners provided 7 volunteers and they were grateful to have our help.  It is great fun encouraging kids at parkrun, knowing some will go on to become full blown addicts like we all are!

The festival was full of sunshine and laughter in particular, staying in a tent with our dear friend Andy who makes us laugh every minute we are with him.  We ate like kings and although we didn’t see much of the billed acts, we were quite content to sit out in the sun with our friends and eat!  We did however manage to get a quick snap with Chris Packham! 

It is now over year since David was diagnosed and what was probably the worst day of my life. We've documented our year, the highs, the lows, the laughs, and the challenges. And while we've told you how the disease is affecting David physically, I wanted to put down a few words about how things are for me. Just like David feels, there's a benefit to dumping your thoughts so today, you're stuck with mine. 

People have different ways of dealing with the moment they heard life changing news.  They may remember a small detail of the appointment, one particular line that was said or maybe the whole thing is a blur and they can’t recall anything about it.  For me, I remember every detail and I relive it every day.  The moment the consultant broke the news is imprinted on my memory forever, what he said, how he said it, his hand gestures, his facial expression.  I relive those moments constantly like a morbid fascination.  The scene will replay in my mind at random times, sitting on the bus looking out of the window, sitting in meetings, even while doing something enjoyable, it will creep in, prodding me and reminding me.  Motor neurone disease is the last thing I think about when I go to sleep and the first thing I think about when I wake up and I suspect this will be the case for quite some time.  It does however, become the norm.  Whilst the shock factor has well and truly worn off, this is now just accepted daily life. 

I had avoided googling MND too much before the diagnosis, mostly for fear of reading something that matched David’s symptoms and also fear of stumbling across survival times however, putting MND into any search engine will immediately ram the facts home with the first sentence.  After he was diagnosed, I became obsessed with watching documentaries, devouring books, and reading case studies about MND.  One particular documentary I became fixated on was ‘How to die: Simon’s choice’ – which is available on BBC iPlayer.  I watched it 6 times in the first fortnight, trying to suss out Simon’s symptoms and progression rate, looking for similarities between him and anything I saw in David.  Simon chose to go to Dignitas in Switzerland to end his life however, assisted deaths are actually very rare in the MND world, with most people choosing to make the most of the time they have left.  Simon had not banked his voice and was losing strength in his hands to write so was fearful of becoming ‘locked in’ and unable to communicate; these reasons were perhaps more pertinent in his case.  With a method of communication, I would imagine life would be more bearable despite paralysis but unless you are in that situation, that is a life you could only begin to imagine.  I made sure that David banked his voice straight away for these very reasons.

Soon after David was diagnosed, we got into a disagreement about whose situation was worse.  On face value, obviously David has to live with this condition and feel it’s effects on his body and I absolutely concede that this must be the most abhorrent thing to have to go through.  The argument I put forward however was that I will have to watch all of this unfolding in front of me and apart from looking after him, I will be helpless to stop the ravages of the disease on his body and mind.  I will have to look after him physically and mentally, care for his every need, watch him die and then be alone afterwards with this memory.  There is always a risk marrying someone older than you that you will be the one left behind however, the age gap never seemed to pose much of a problem between us.  Maybe because David has an impish childlike quality – he was often high kicking round the living room, swinging the tassels of his dressing gown and generally dancing, singing and being very silly so he always seemed very young to me.  Not only that, but he also took meticulous care of his body so there was no reason to be worried about him not living to old age, like his dad who was nearly 90 when he died.

We never did agree and while we could each see the other’s standpoint, we just had to agree to disagree and that it was a closed subject that we wouldn’t discuss again to save upsetting each other.  After all, no-one will ever come out as a winner, will they? 

David sometimes spends a couple of nights on the island with his mum and it on these nights, alone in the house, I imagine what this will feel like in the future on a more permanent basis.  I will be sleeping alone sooner than you would think though as in the next few months, David will be unable to get up the stairs and will move into the conservatory downstairs.  Unless we bunk up on his single hospital bed together, we will have to end up sleeping in different parts of the house.  I have always maintained that I am a very anti-social person, despite a large circle of friends, and on the nights when David is away, I really do value my alone time.  I have always enjoyed my own company and at the moment, I am quite content in an empty house, because I know he will be coming back but the thought of being alone every evening in the future for the foreseeable feels me with fear.  David and I have always had a solid and close friendship, long before we were a couple and since being together, we have had a strong bond.   The thought of him not being around is not something I can quite get my head around.  It is a bit like when you try and think about how big the universe is, or how many grains of sand there are on the beach.  It is so difficult to think about, you just can’t!  It is the same thing trying to wrap your mind about the fact the person you love is going to die.  Whilst we all know this about our loved ones, we don’t really think about it because it doesn't seem real, but I know this with absolute certainty and that the clock is ticking.  The mind does a marvellous job of protecting you, so I keep the thought of David’s death just behind the door for now.  Don’t get me wrong, the door is open, but I can’t let it fully into the room.  To do this would be just too much to cope with so it remains a shadowy figure that lingers in the background for now, creeping ever closer as the disease progresses.  Same applies when thinking how I will ever move past this, the thought of being able to feel love for someone else is just unfathomable. I feel I am destined for a life on my own, and this is sad when I am still in my 40s.

As David’s mobility continues to decline, we find ourselves in unchartered territory, a limbo between mobility and immobility.  We have all seen Rob Burrow going from zipping around on the rugby pitch to being in a wheelchair.  What we don’t see so much is that in-between period of struggling to get around while your legs are giving out, having to walk with a frame, being pulled up out of chairs and having your leg lifted over the doorstep and that is where we are now.  Rob Burrow did a fantastic job of raising awareness of the disease, but the bulk of his decline happened during lockdown and he says in his autobiography that he was unable to go outside for months on end.  As David reports, he can still just about get around under his own steam, but we know these days are numbered and we will soon move into the next phase of fulltime life in a wheelchair.  Going on the cruise recently and just this week at Paulton’s Park and vegan campout, I can see how much his mobility has deteriorated and how much of my help he needs, mostly helping him to walk over short distances or pushing him in the wheelchair.  We recently decided to start filming him doing everyday things, just as a way of documenting the disease.  We have so far captured him trying to prepare food, peel an orange, drink out of a full cup, walking with the rollator and a few other bits.  We shared a video on the anniversary of his diagnosis and although we knew it would be upsetting, David was insistent it was shown. 

So, despite all this, is our positive outlook all a façade?  No. David is genuinely happy and content, and that makes me happy.  As we live with the decline on a daily basis, it is harder to see it (although I am sure David feels it) so it is usually other people who have not seen him in a while who can see a change and feel upset by it.  His legs are starting to let him down quite significantly now and he could barely get his foot over the doorway last week.  He says to me ‘look at this’ while struggling to lift his foot.  ‘Well, that is shit, isn’t it?’ I say to him.  What else can I possible say?  It IS shit.  We kind of huff for a minute and I unpack the shopping and then it is back to the normal banter.  We have had a couple of meltdowns over the last year, but I think we could count them on one hand.  We recently watched the Rob Burrow documentary and while showing footage of Rob running around on the rugby pitch, his voiceover says, ‘I’ve had a brilliant life’ and David says, ‘that is exactly how I feel’ and it makes us cry.  Then we see Rob sitting in his wheelchair, completely paralysed and David says, ‘that is what I’ll be like’.  I don’t say anything, we just hold hands and the tears flow.  ‘It’s good to have a cry now and then’ David says.  He’s right of course and we feel a little better.

Knowing the average prognosis, unlike some people with MND, we were always 100% confident David would get through the first year.  But now we are into the second year and that scares me.  We fill our time making memories and having lovely experiences but on days when we sit at home doing nothing, I worry it was a wasted day.  There is a lot of pressure on making every moment count and actually, that is exhausting, and we need some downtime too.  But with downtime comes guilt.  I am still working full time, doing the majority of the running of the house and shopping etc and with the mental load of appointments, forms to fill in and dealing with a constant stream of health professionals, I sometimes feel like I never stop or get much time to myself, and sometimes my phone messages go unread while I struggle to find the energy to reply to friends and family.  When people tell me I look tired, they are not wrong! And after a bit of respite from the paperwork of house buying, we're now back to dealing with the council grant for the wet room, filling in forms for pensions and sorting our wills.

The one upside of knowing your time is limited is that you make the most of the life you have.  David will attest to the bursting diary we have to keep, with rarely a weekend where we are not meeting friends, running at an event, at a gig, visiting the island, going away etc.  It can be exhausting, but we know we must do these things while we can.  We have had the most unwavering and loving support from our friends, family and work and it has brought us all closer together.  We can take life for granted when it seems unlimited, and the last year has proved it is anything but.  We are still navigating and learning about motor neurone disease, just as you are by reading this blog and we thank you all for joining us on this wild ride. We have had the worst possible luck, but we're very lucky to have you all in our lives.

#mndcangetinthesea