05/04/2026 - 'Falling Stars' by David

I have been strangely out of sorts for more than four weeks now. Less than the conflict in Iran, but longer than the day Dave Gilmore's black strat sold for $14.5 million and Kurt Cobain's Fender Mustang sold for $6.9 million at auction.

Weirdly, I have no idea what is wrong with me. It started throaty, with blocked ears and a productive cough, so I told Alice I had catarrh. She just laughed at me saying that no-one calls it that anymore. Apparently the term catarrh is out of fashion these days. 

Unfortunately, this all started on the week leading up to my 60th birthday weekend so I dosed myself up for a party on the Saturday and also for a two night break in London. On our return to Southampton, shivering and blocked up, I took to my bed for a week feeling sorry for myself.

I rose for a respiratory appointment the following week, and on finding an irregular pulse, they ran off for an ECG machine thinking I was in atrial fibrillation. Luckily I wasn't but they then wondered if I had a chest infection because I was coughing up gunk and because infections of that nature can be serious for anyone with MND, I was prescribed antibiotics. 

I was there to try and take home a non invasive ventilation (NIV) machine delivering CPAP (continuous positive airway pressure). It should hopefully help with my CO2 retention that is causing sleep apnoea, tiredness and headaches. So far after about 10 consecutive nights, I have managed to keep it on all night twice! Either the mask moves and I can't adjust it myself, the alarm goes off, the air leaks and annoys me or it makes my throat dry! I've spoken to Steph, my respiratory physio, who has offered a humidifier and a chin strap, so let's see how that progresses.

Our videos of our London trip and my attempts with the CPAP machine on our socials have thousands of views, hopefully informing and educating people on the way.

After a week of Amoxicillin I was no better, and Alice and I both suspected it was actually viral rather than bacterial, and that I probably had either covid or the flu. Just to add to the fun, I then got an infection in my big toe nail, and was given more antibiotics - this time Flucloxacillin. 

In the last week, while spending another few days in bed and taking Paracetamol for the shivers and popping ears, I've also had to add diarrhoea to the list of symptoms. 

I seem to have good days and bad, and we have been out to enjoy the Van Gogh Live immersive experience at the Winchester observatory, thank you to Caroline and Neil for the tickets.

We also met up with my mum, my sister Lois, my auntie Gill, and my cousin Caroline for a pub meal in Southampton which was lovely.

MND wise, we were invited to a research meeting at King's College in London to help professional researchers to meet families affected by the disease to better allow them to inform their research. We met up with Dai, who Alice has previously met through a support group, whose wife Denise died in January this year. We also met a lady whose father has frontal temporal dementia related to his MND, which is problematic as he is now non verbal, and also a lady that lost her husband to MND at an early age with three young children. It was therapeutic for all of us to explain to the professionals how we feel, and how we want to best help the researchers so that they can be part of the solution to finding a cause and cure.

We also visited our local hospice to again meet Mary, a physio who has become a friend of ours. She asked us how we were coping, and on hearing that is becoming harder for us both, she did a prelimary run-through of the CHC checklist which would enable use to get free NHS carers and thinks we're not too far off qualifying. We also told her social services have classified us as amber for our care needs assessment which could give us a limited amount of carer time. She told us she'd call them to chase us and three days later, they called to say we've been moved up to the red list but even then, there's a backlog. But at least our case is to be prioritised now. We've had good success with our Sara Steady standing aid but she has also organised for a motorised version to be delivered which will help Alice's back as I have become less able to help her during transfers. 

While in the hospice cafe, I observed a young mother with two young daughters having lunch. Was the lady the patient? Or were they visiting a family member? Her husband ? Their daddy? Either way, it was very sad.

It was a bit of a palaver getting to the hospice on the bus. We were refused on the first bus because of people with buggies in the wheelchair space refusing to move which was frustrating and once we were finally onboard the next one, it took a long time so on the way back, we stopped off for a hot cross bun latte.

The other day, I was well enough and able to motor up to Sainsbury's in my power chair to treat myself to some vegan Easter treats. A chocolate egg and marmalade, rhubarb and ginger, and very berry hot cross buns! Unfortunately Alice is coeliac so finding gluten free and vegan hot cross buns is tricky. Sainsbury's gluten free buns have dried egg in them so unfortunately I came home with nothing for her. A quick internet search told me that Asda's gluten free hot cross buns are vegan so we took a trip into town so that Alice can have her Easter treats but alas, none were to be found so she had to settle for tea cakes instead. 

I would offer her some of my chocolate but I've been told that I have to eat as many calories as I can. Oh what a shame! 

Hopefully I'll get my groove back soon, but in the meantime, as I'm writing this in bed with a cup of black coffee and toasted hot cross buns, supplied by my live in carer, I wish all my friends and family a happy Easter Sunday, whether you believe in a God, or like me, you don't. 

The Easter bunny delivered two chocolate bunnies this morning, which sounds a bit weird I guess, but I assure you that they are totally vegan so no bunnies or indeed cows were harmed in the process.

My MND journey has been a mixture of sadness and beautifully happy times, and when I spilt my first sip of coffee on my top and bedclothes (don't tell Alice), I said a rude word, then I looked out of the window and saw the sun shining, and thought how lucky I am to be alive. 

I would like to thank Alice for looking after me so brilliantly as she always does, although having a nurse for a partner, is a bit like having a teacher for a mother (both of which I have). Every day for the last fortnight she has said that I can't possibly be still ill? Sadly, (or is it poetic justice?), she is now complaining of a cold too and had to have some time off work to rest and recover. She still made my favourite lunch combo though - a baguette with cream cheese, mango chutney and banana!

I would like to also thank Rachel S for recreating and delivering the chunky vegetable stew that my mum used to make, complete with homemade sourdough bread!

Thom foraged and delivered some wild garlic, which Alice has so far turned into a lovely pesto sauce, and a leek, potato and garlic soup. Thank you!

Thanks also to my nephew Eddy and my friend Alex for taking on the 100 miles in March for people with MND. I saw Alex on the island yesterday and despite a house fire that has seen them move into temporary accommodation, he is still running, walking and hopping along for the cause. Luckily not all of his cowboy hats were burnt! 

I'd like to say good luck to my former nursing colleague Anna, and her hubby Glenn, for their incoming first child. They have both been incredibly kind and thoughtful to us since my diagnosis, and they will be amazing parents for sure.

Sadly, I had to say goodbye to my friend Paul's father recently. He was our roadie and driver in our touring days in the 80's, and in later years he would always come and watch me play football whenever I was in his hometown of Ventnor. It was pleasingly apt that on a windy day on Ventnor seafront, his soul, his smile, and his undying love for his family and friends, we're all swept out to sea for everyone to enjoy. Sweet dreams Colin x

We recently became aware of a guy called Matt who was diagnosed with MND and had secured a last minute wheelchair space at the London Marathon. Being new to assisted running, he was having trouble finding a suitable chair to use so we offered to lend him ours for the event. Only proviso was that his team took it for a practice spin before the big day so his cousin came along to collect it and they pushed Matt round Hyde Park for the afternoon. Matt is hoping to raise £100k for the MNDA. This also reinforced our desire to go and watch the marathon and support the MNDA runners - plus see the Bakermobile in action once again!

I will leave you with a lovely photo that was taken yesterday. When I was diagnosed, I decided where I wanted be after I have gone, and I secured a plot and had a weeping cherry tree, called Falling Stars, planted in a cemetery in the town that I grew up in on the Isle of Wight. As it is currently in bloom, Alice put on our glad rags and popped over to the island and the sun shone for us. 

Long live life and love x