18/08/2025 - 'MND can get in the Atlantic' by David

#mndcangetinthesea went on a cruise! 

Alice and I spent a week in Spain, Portugal, Guernsey, the Atlantic and the English channel aboard P&O's Ventura. The weather was hot, and we ate very well, enjoyed the shows, quizzes, talks, and late night rhubarb bellinis in the piano bar.

We didn't get off in Vigo as we have already been there so we took advantage of the quiet ship to visit the spa and sunbathe on the deck.

Lisbon was nice, if a little urban, St Peter's Point was much like many other sailing towns, but Porto was beautiful, and by far our favourite. The banks of the Douro are dotted with red tiled white houses, and the cable car up to the bridge, gave us amazing picturesque views up and down the river. 

Unfortunately we couldn't book an accessible room, so we had to take the manual wheelchair, which didn't fit through the cabin door, so Alice had to help me in, then go and fold up the chair and bring it in. She also had to help me in and out of the bathroom, and into the shower, but despite all this, we did actually have a lovely relaxing time. 

We found a nice secluded deck that was quiet, to sunbathe and read our books, and it was lovely looking out on the glistening sea, with not a worry on our minds.

At night, the low hum of the engine, the gentle rocking of the waves, and the rhubarb bellinis, sent us off to sleep contented. Safe and warm next to each other. We are already planning our next trip and we will definitely book accessible accommodation!

Alice has a parkrun streak going at the moment and she hasn't missed a week since December, so she was really keen to get off the boat early enough in Southampton to enable us to get to our local parkrun. We were told that disembarking time was 8:45, but if we could carry all our luggage ourselves, we could get off at 7:00. parkrun starts at 9:00 so we were determined to make this work. With my suitcase on my lap in the wheelchair, Alice had to push me, pull her suitcase, and have a bag on each shoulder as she negotiated the ramps and gangways. This still didn't stop her getting a course pb for the third week in a row, before we went home for a coffee and a snooze. 

That evening we were out again to see my favourite band as a child - Mud! It's 50 years since their 10 top 10 singles, including 3 number 1's in the 70’s and two of the original band are no longer with us, but I was too young to see them first time around, so I was looking forward to seeing the reformed band. I took one of their albums along and the two original members Rob and Ray signed it for me so I had a great night.

Apart from the waitresses, Alice was the youngest person in the room, and had to put up with me and everyone else singing along all night. She said she liked two songs!

Now that I am confined to a wheelchair, I can do virtually nothing around the house and I need constant assistance to get dressed, washed, and fed, so Alice has to do all the housework, look after me, and hold a full time job down too. So Alice has now dropped her hours at the hospital so she will get a day off during the week now, which she is looking forward to. She does so much for me, and she definitely deserves it. 

I took my power chair over to the island for a couple of nights to see my family as I hadn't been over for a while and I managed to see Rachel and Max, my sister Lois, and even took Anna out for lunch in Cowes.

While I was over, my mum gave me a blanket and a cuddle cushion that her patchwork friends had made for me using the material from Rachel and Anna's clothes from when they were children. It was such a lovely thing for them to make for me, and they are both beautiful. Thank you so much ladies, the blanket will keep me warm this coming winter. 

I was back on the island again a few days later, this time with Alice and a nice little punnet of fellow Vegan Runners to do Medina parkrun, which is on it's summer route in Ryde. We caught the hovercraft from Southsea which is always fun, and Rachel and Anna joined us for the parkrun.

The route goes along Appley seafront which is very flat, then finishes with a massive hill which is very unflat. Alice bombed along the sea path then managed to get up the hill before collapsing on the ground. It was great to see lots of friendly faces and we picked up another male wheelchair course record - my 17th!

We then took the ex London underground train to Sandown, to see Benji and Balu, the bears that were rescued from being a sideshow in an Azerbaijani restaurant, and now have a lovely enclosure to live out their days happily. We've been following their story via the webcams since their arrival as scared, underweight bears, so to see them splashing in the water and running around looking fit with their fur in great condition, was an absolute joy. 

Our JustGiving page that we set up after my diagnosis two years ago has now topped £12,000 which is just amazing, so thank you to everyone that has donated. All the money goes towards helping affected families come to terms with their situation. 

Another £25,000 has been raised by our friends and family in my name, and the money continues to come in. 

Our friends Ruth and Conrad have completed their epic 192 mile Coast to Coast Wainwright walk and have so far raised over £1,250.

Our friend Steve organised a cycle jumble and raised £120, and two more of my friends, Alex and Mave have joined Ange and Debbie aiming to walk 15,000 steps every day in August 

I've written a lot about the weakness in my legs, but we've noticed recently that my arms are equally as weak, and it inhibits my independence. I'm having trouble getting the food from my plate to my mouth, and Alice has started to sit beside me and once I have a fork full, she helps my arm up to aid feeding. Also, last week I couldn't get myself up from the upstairs toilet as I just didn't have the strength in my arms. Luckily Alice was available to help, but if she is at work, I need to make sure I use the adapted toilet in my wetroom downstairs. 

Another irritating symptom I'm having is swollen legs and feet - King Charles's sausage fingers have nothing on my toes! I mentioned this to my consultant at our last appointment and he just shrugged and said it's par for the course. A lack of movement combined with lack of muscle means my blood isn't moving around properly and gravity means fluid just pools in my feet. Usually, I can sit at home in my riser recliner with my feet up, but on the cruise, the heat and sitting in my wheelchair caused my legs to really puff up. So much so that on the first black tie night, Alice had to really squeeze my feet into my wedding shoes but couldn't do the laces up and it was quite painful. By the time the second black tie night came around, the shoes were in the bin and I just wore my black socks in the hope no one would notice. I have a nice pair of Billy boots which are specially adapted shoes which can be done up with a long zip round the side but even they feel tight now. I've messaged my MND care co-ordinator about possibly seeing a lymphoedema nurse but for now, Alice is on massage duty!

Getting up the stairs (with Alice behind me, pushing my legs) is also getting harder as I'm getting weaker, and moving around upstairs with a walking frame is quite a struggle, so we've spoken about me moving permanently downstairs. It's something which neither of us wants, but we know that it is inevitable. My main problem is getting down the stairs on my own once Alice has left in the morning, so we've decided that I will sleep downstairs on the nights before Alice has to get up for work, but she will help me up to bed on the nights before a day off. It's a halfway house arrangement for now and it will start this week. 

I finished the week with an afternoon DJ set with my friend Darren, and lots of friends came to support us.

It was a summer themed afternoon and we were collecting funds for the local air ambulance. We played for five hours and we raised £500 so everyone was happy.

I was pleased to see my young friend Holly who told me she had to give a talk at her school about a charity. She told her teacher, Mr O'Farrell, that she knew someone with MND and he told her he knew someone too. And of course, as it turns out Mr O'Farrell (or Dan) is a friend of mine, they were both talking about the same person - me!! Thank you Holly for continuing to raise awareness about motor neurone disease (and money!)

Here is a selection of my summer tunes, some have tenuous links - how many do you know??

Boogie Nights - Heatwave

Club Tropicana - Wham!

Aztec Lightning - Mexico86 Theme From BBC World Cup Theme 

Pulling Muscles (From The Shell) -Squeeze 

I Feel Love - Donna Summer 

Strawberry Fields Forever - The Beatles 

Buzz Buzz Buzz - Jonathan Richman And The Modern Lovers 

Cruel Summer - Bananarama

Summer Night City - ABBA

Rockaway Beach - Ramones 

Summer Love Sensation - Bay City Rollers 

Summertime Blues - Eddie Cochran

Zorba The Greek - Herb Alpert's Tijuana Brass 

Escape (The Pina Colada Song) - Rupert Holmes

Sun Sea And Piracy - Bow Wow Wow

Midnight Summer Dream - The Stranglers

Build Me Up Buttercup - The Foundations 

The Sun Always Shines On T.V. - a-ha 

Ever So Lonely - Monsoon 

The Groove Line - Heatwave

Give It Up - KC & The Sunshine Band

Long Hot Summer - The Style Council 

Stranger On The Shore - Mr Aker Bilk

Celebrate Summer - T.Rex

Argentine Melody - San Jose. Theme of World Cup 1978

Soul Limbo - Booker T And The M.G's

In The Country - The Farmer's Boys 

Surfin' U.S.A. - The Beach Boys

Airport - The Motors

Down Under - Men At Work

While I sit at the decks, Alice stands beside me and helps me cue up and put away the records. It's becoming harder to do, so I'm not sure how much longer I can play these gigs. It's obviously disappointing that my legs and arms are getting worse, but we know the course of my condition, and we can't stop it. I'm happy that I'm still talking and eating, and we are still enjoying life together. 

This morning, I sat outside with a coffee and watched the squirrels flitting around the trees opposite and it was just perfect. I haven't seen much of them in the hot weather we've been having, but now it's a bit cooler they are squirrelling around, maybe burying goodies for the spring? 

Enjoy life and make the most of it. Nobody knows what is around the corner.