23/06/2024 - 'Cruising, MND awareness day and sunsets' by David

Alice and I have just returned from a 7 night P&O cruise to Spain and France and we had a great time. 

We took the wheelchair and were glad we did as on arrival, we were whisked through customs and boarding, burning rubber as the long queue looked on in disappointment. 

 

I used a combination of stick and wheelchair on board and on land, which worked out fine, and we were both surprised at how far I walked. 

We relaxed in the many bars, slept like babies as the waves rocked us to sleep, were well entertained and fed and I even managed a dip in the pool. 

The vegan food at the buffet and the restaurant was impressive and one day they even had aqua faba meringues! 

On the first of two black tie nights, Alice pulled on a lovely dress that we had seen in a charity shop on Shirley high street from a bus window a few weeks ago, and I wore my wedding suit with my dad's bow tie. On the second, Alice again wore a gorgeous charity shop find, and I wore the jacket from Rachel and Max's wedding earlier on this year. 

We visited Gijon, La Caruna, Vigo, and Cherbourg and when our bags were scanned for guns, knives and drugs on our return to the ship, all they found were snacks and tat.

We saw shows, did quizzes, swam in the pool, saw dolphins from the balcony and drunk cocktails, looking out to sea as the pianist entertained us. Among his show and jazz standards, he slipped in a lounge version of Radiohead's Creep which was surprisingly cool. 

On the last evening, I sat out on the balcony and watched the Summer solstice sun disappear at the end of a lovely holiday.

Back in Southampton, while washing the dishes on Friday night, I received a phone call from Anna, who was at Wembley stadium with Rachel to see Taylor Swift. She held up the phone to the stage as the support act Paramore were playing 'The Only Exception', which is the song that Anna sang at our vow renewal last year. It was a lovely moment and Alice and I listened in together. It's the second time that Anna has rung me from Wembley. The first time was 10 years ago when she was a giddy teenager watching One Direction. She may be older and wiser now, but the excitement leading up to seeing Taylor Swift, and the emotion in her voice was no less hysterical!

On Saturday, we caught the Hovercraft over to Ryde for the Medina parkrun on tour (as the IOW Festival is currently on the usual Medina course). It isn't a course suitable for the running buggy so I voluntered as a barcode scanner and Alice ran.

We travelled with our vegan runner friends and found a nice cafe and enjoyed a VLT and a Magnum. 

On Sunday, we did get to use the buggy as we rose early to run the Solent Airport runway 5k, a race to raise money for Naomi House and Jack's Place which are local hospices for children and young people. Being a runway, it's obviously flat, but surprisingly is not just a straight line as we had hoped, but Alice, undeterred aced it in another pb for a 5k. She's got guns!

You may have seen another high profile sportsman has been diagnosed with Motor Neurone Disease this week. Ex-Gloucestershire and England cricketer David 'Sid' Lawrence has been diagnosed at 60 after tests. A combination of environmental, lifestyle and genetic factors are thought to cause MND, and we know that this rare illness seems to be very prevalent in high performance athletes and there are research papers to back this up. A 2022 study at Glasgow University found that sportsmen are 15% more likely to develop MND than the general population. Lots of research is ongoing, and I'm on a trial through Southampton hospital trialling various drugs to assess their effectiveness in slowing down symptoms, but so far no cure has been found. 

Global MND Awareness day was this week and Alice posted a brutally honest assessment of my diagnosis, progress and prognosis.

"David and I have been trying to raise awareness (and funds) over the last 11 months but sharing the hard facts again today. 

David's symptoms started with muscle weakness and wasting of his quads, footdrop, muscle cramps (first in legs, moving to hands, neck and abdomen) and fasciculations (twitching) in the legs, moving to arms. 

It can start with speech and swallow but David is so far unaffected in these areas (although this is likely to develop). When this happens, he'll be fed through a tube in his stomach and will communicate with a computer (he's already banked his voice for this day).

His respiratory muscles have just started to weaken and he'll later need help breathing, first at night and then during the day. Whilst he can still manage round the house independently, he is starting to need help dressing, getting up from chairs, opening things, cutting hair and nails, etc

David has had to give up football, cycling and running. 8 weeks ago, he could walk for an hour. Now, he can only walk for 2-3 minutes at a time (with help) and uses a rollator or wheelchair. 

But what MND doesn't do is stop you enjoying life and we're both still doing just that - MND can get in the sea!"

Thank you Alice, I couldn't have said it better myself, and by reading and discussing this blog, you too are raising awareness so thank you x

It was quite emotional watching the sun set on the longest day in the middle of the English channel, as I was acutely aware that it might be the last one I see. It was gorgeous, brilliant and beautiful, and as it faded to nothing and I watched it disappear, I likened it to my final moments and I said goodbye to Rachel, Anna, Alice, my family and my friends. That might seem a little morbid but it was actually a lovely moment and when the embers and the shadow were all that was left of the sun, I went inside to the warmth of our bed and lay next to Alice with a smile on my face.