11/02/2024 - 'The highest of highs and the lowest of lows' by Alice

Strap in for a rollercoaster - it's been a big, emotional and busy week. 

'Monday Monday... so good to me'. Well, not really.

I'm doing the blog this week and that's because David just couldn't face it and needs a week off. I'm sure our regular readers usually feel reassured that despite his disease, he's upbeat and positive but this week, started with him feeling down (and that's OK!).

So was there a trigger to this low mood? Probably yes. And that was our check up with his neurologist at the hospital. We get a 30 minute appointment and as usual, we were joined by Clare, the MND care co-ordinator for the area. The consultant starts with the same question he asks every time - 'what's changed?' and we have deteriorarion to report. David's hands are becoming weaker and every day tasks are becoming harder (if not impossible). Not only that, his arms are failing him so his overall strength is weakening. He had been packing up his percussion bag for the gig Friday and couldn't lift it despite being able to a month ago.

We move on to discussing the MNDsmart trial David is on and other upcoming trials and potential treatments. We are aware of a treatment (not cure) that is on the horizon but not yet available and it can improve life expectancy by 40-60%. We learn it needs further trials but could be prescribed for 'compassionate use'. David tells the doctor he's at the front of the queue. We also tell the doctor that David is stopping the Riluzole due to suppressed appetite and without hesitation or argument, the doctor agrees that this is the correct decision as David needs to keep his weight up.

Next we discuss the impending house move and the adaptations we need to do. Clare tells us we can apply for a grant to get the work done and this will save us some money to freshen up the rest of the house which is welcomed news.

Next up is the breathing test. The idea is to fill your lungs and blow into the gadget as hard as you can. This is a test of the muscles that control breathing to see how strong they are. David first did this test in October and blew slightly under what would be expected. This time round, he couldn't hit that number despite 3 attempts and only blew 87% compared to the average man his age. We know this is the path to deterioration in breathing - par the course with MND and David does admit to feeling more breathless these days. We did wonder if that was due to his lack of exercise and becoming more unfit but seems more likely, it's disease progression and because of this worsening score, David has to be referred to the respiratory clinic for review. Whilst he is relatively unaffected by breathlessness at the moment, this decrease in lung function does indicate he will need to use non-invasive ventilation at some point to help him and he needs to be assessed and monitored for when this time will come.  We leave the clinic with another appointment in June.

Although it's good to have a medical check in, appointments like this leave us feeling drained and emotional. David remarks that although he likes his doctor, he's just another patient and once we leave the consultation room, he's the one who actually has to live with this disease. As usual, we dissect the details of the appointment and try and make sense of it all together but it does leave David feeling down. He's up to bed early to rest and feels despondent. Although I worry when he feels like this, I know it's normal and he's pretty good at bouncing back to his usual self. We just have to ride the storm.

In the afternoon there was some good news. My sister, Ellen, had managed to bag 4 tickets to see Air at the Royal Albert Hall. This was quite an achievement as they sold out in minutes and required having two screens open to be in the queue. Knowing going to the Royal Albert Hall was on David's bucket list, she very kindly paid for the tickets so this dream could be realised and we're very excited for the gig. When we were first together, I loaned David Air's 'Moon Safari' CD and wrote notes and doodles for him in the lyrics booklet. We recently rediscovered this while scanning in our CDs to sell and it brought back happy memories.

Unfortunately that same evening, I found myself in the ED department with a bulging disc in my back. I'm warned I'm not to lift anything as it that could cause a prolapse. I'm given medication to abate the symptoms but these tablets cause dizziness and drowsiness so I'm off work for a bit.

So onto our biggest news - we're home owners! We've lived together for 10 years in 4 different houses - all rented so we've never been able to put our stamp on a home, put up a picture or paint a wall without consequence but now we can, and we're excited!

It soon became evident after diagnosis that our current rental would be totally unsuitable for David's needs - the cost of the rent and lack of downstairs facilities (and the inability to adapt) pushed us to finally get on the property ladder together. A long, stressful and difficult search ensued but we finally found the ideal house, just down the road from our current lodgings. With help from both our families, we were able to seal the deal and Wednesday was the big day when we got the keys.

The morning started with a nervous wait for the call to confirm everything was in place and at 11am, the estate agent rang to say 'congratulations' and the keys were ready for collection. We write this blog with honesty and transparency so I am not ashamed to tell you that there were a lot of tears that morning. There was an elation to owning a home, fear of the responsibility, joy and happiness but also a sadness. We both know deep down the reasons we had to do this and we also both know that in the future, I will be living there alone. These feelings of course bubble to the surface and I'm in a flood of tears that just wont stop. By complete coincidence, while we're standing in the bathroom holding tightly to each other, David's Spotify starts playing 'Dancing lessons' by Sinéad O'Connor and we stand silently together listening to the lyrics:

'And when you wrap your arms around me
And when you take me close and say
That you're so happy and so glad you've found me
You take my rainy days and make them go away'

We get ourselves together and jump in the car, headed for the estate agent. We park outside but walk up the coffee shop and David reports his legs feel the worst they ever have, weak with no power. MND is unpredictable so we never know if periods like this will get better, plateau or continue to worsen. Whilst having our coffee, we decide to buy a shopping trolley as instead of our 90 second walk to Sainsburys, it will now be 4 minutes and carrying bags full of shopping will soon be too hard for David. As we walk down Shirley High Street, we pass a 'bazaar' and choose a snappy tartan number. David is thrilled with his purchase. Not only does his think it improves his street cred (and on the mutant mile, anything goes) but it offers a modicum of stability.

Just the 5 minute walk to the estate agent is hard and David is desperate to sit down. He also has no strength to drive home so I have to take over despite my bad back. These are the realities we live with but perhaps go unseen as he generally portrays the picture of a man who is still functioning very well to the outside world. But this week, his deterioration has felt significant.

But on to the new house! We pull up on the drive and immediately meet our new neighbours. We discover they have 2 children who both go to the same school as Fin, their daughter is even in the same year. Their younger son also likes gaming so we're hoping the kids will get on.

We let ourselves in to the empty home and start to explore again. We re-group and declare that we love it!  We start to plan where the furniture will go and how we will decorate. We take Fin round after school and he declares it to be a 9/10 which is high praise for a hard to please teenager! As is tradition when you move house, we have a chippy tea but ate it in the comfort of our old house where we have somewhere to sit!

The whole house needs a good clean but as we've no energy for that, we treat ourselves to getting a company in to spruce up the place before we officially move in. This gives us more time at home to de-clutter and pack. I think David has been to the charity shop twice a day, every day this week! Little do they know that the football boots David donated have played on both Eastleigh FC and Southampton's pitches.  As we can't move in just yet, we leave Snowy in the window the guard the house for us. 

Thursday started as another sad day. David had his usual hot bath and then felt totally drained afterwards. He sat on the sofa and we talked and hugged. There's nothing I can say or do and I feel helpless. I just remind him of the slogan on the MNDA advert - 'MND takes everything, but it can't take the love inside'. Our friend Andy Barding once referred to MND as 'the most Tory of all diseases' and he's damn right. David is very morose as he feels his legs are giving up too rapidly and he fretted about how the gig on Friday would go. Whilst he knows he can do the gig sitting down, that's not what he wants as last time, he was pogo-ing up and down. What a difference a month makes.

Later that evening, Ellen and Shaun dropped round to lend David a guitar. He's been trying to learn a song (which is a secret apparently) before his fingers give up and he sat on the sofa strumming away while I tried to guess what he was playing. He then went out for dinner with his ex-work colleagues. Both the guitar and the meal out with friends helped to lift his mood and he came home smiling with a gift from his workmate Anna. Some lovely new headphones and a digital Walkman loaded with 3000 tracks by David's favourite artists. 

Friday we travelled to David's beloved island for the Bobby gig and to see his mum.  He'd been so worried about how he would be able to perform after the rocky start to the week but his fears were unfounded as he started to feel better. Whilst he now needs me as his roadie to carry his percussion and assemble everything, tightening the screws on mic stands etc, he comes into his own on the stage. Perching on a seat between songs, he's in his element performing the much loved Bobby songs.

The venue has sold out and 300 tickets have been snapped up with everyone wanting to see the band. It starts upbeat but then the song 'Why the hell?' brings me to tears. We then we look at each other during the song 'Oblivion' with the lyrics 'you were one of those people I would've died for' and there's a brief moment of sadness amongst the joy. Although not formally announced, we are sure this is the last gig and David is determined to soak every second and enjoy every moment.  The crowd is loving it with lots of cheers of 'Go Dave!' (mostly from me) and the whole place is bouncing, with everyone singing along. It's a great atmosphere and a great gig!

The band have released a white vinyl EP and they flew off the shelf like hot cakes, making lots of money for the IOW branch of the MNDA - funds which will be used to help local families like us. The band members took delight in signing some of the records and David signed his daughter Rachel's with 'Dave B (dad)'.  Big thanks to Andy B and Tony P from Wight Vinyl for making it happen. You can still get your own shiny copy here: https://bobbyicanfly.bandcamp.com/album/bobby-i-can-fly

After the gig, we fell into bed at 1am, exhausted but happy. 

You would think after all the Friday night activity, David would need a rest but of course, Saturday is parkrun day. David had invited his family to join him as running is getting so hard now and he needs lots of support. He was thrilled when both his daughter Rachel, brother Rich and sister Lois also agreed to give parkrun a go, despite not running for many years. David's nephew Isaac was also there but as he's old enough to run on his own, he shot off to do his own thing (and who can blame him!)

We were also joined by lots of other friends, Rob, Kev, Peter, Guy, Neil and Sara who all ran with us - what is commonly referred to as the 'Baker fun bus'. We had the most incredible encouragement on the way round from fellow parkrunners as we ran, walked, jogged and shuffled. As usual, I was tightly gripping David on one side but this time, had the luxury of friends and family taking turns to support him on the other side.

We came in to the finish line to a round of applause and a guard of honour, formed by fellow parkrunners. A poignant moment as they formed the very same arch when we did parkrun together on our wedding day, 7 years ago.  We finish in 52 minutes and we know that this was David's last run. 

A very hard decision to make but the right one. David has managed to run 25 parkruns since being diagnosed in July which really is incredible and a testament to strength of character (or stubbornness!). I've always been so proud to hold his hand at parkrun and we've had wonderful support from our friends who are willing to sacrifice their own run times to join us at the back. Its not the end of our parkrun days though as we will now embark on parkwalks and volunteering so we can still be a part of the Saturday morning fun. 

Vanessa and Erin are also at the finish line waiting for us and we get lots of lovely photos to commemorate the occasion. 

We get back to David's mum's house and I feel tired so I can only imagine how David is feeling. He says he's going for a nap before we head back to Southampton and I go back to check on him 30 minutes later.  Its been a week of two big 'lasts' - the gig and the running so I'm not sure how he'll be feeling. 

I go in the bedroom and he's snuggled under the duvet, half asleep. I ask him if he's alright and he says 'I'm so happy and content' and in that moment, all drama of the week is forgotten. I give him a kiss on the forehead and leave him to his thoughts. I know he is loved and feels loved and for now, all is right with the world again.