22/06/2025 - 'What's occurring?' by David
I have had to finally give in to the cooking and washing up, as my hands are too weak to chop food or lift pans, and my mobility around the kitchen is pretty poor. I can sit down to do the washing up, but again, my hands are too weak to lift the crockery on the draining board, and so far, the things that have fallen to the floor haven't smashed, but I know it's going to happen, so unfortunately the cooking and cleaning up of the evening meal is now Alice's job.
It's a shame, as I've always liked cooking. On leaving school with poor CSE grades, I went to college to get a City & Guilds qualification in Catering & Hospitality.
I spent a decade working as a chef at various cafés, restaurants, and hotels on the island and thoroughly enjoyed it. Unfortunately, the hours and the pay weren't great, so I looked for other opportunities. Since leaving the industry, I've always liked pottering about in the kitchen, listening to the radio, and I will miss it, but Chef Alice has, in the last week, produced some lovely meals. I've enjoyed sausages with cheesy potatoes, pasta and meatballs with a creamy tomato sauce, stir fry, and a lovely warm Waldorf salad.
We've had two midweek date nights out on consecutive weeks recently, which makes a change, as with Alice still working full-time and caring for me, we rarely go out during the working week.
Firstly, we had a Wagamama's and a Bloody Mary after watching The Salt Path at the cinema, and then the next week we had a Mi Rice meal before seeing the ballet production of Quadrophenia at the theatre. Good food, great shows, and smashing banter.
We've been on another weekend away, this time to Barry Island in Wales, and the weather was lovely and warm. We ran the Barry Island parkrun, which was the hardest course we have done since Alice has been pushing me. There were lots of turns and inclines, including Heartbreak Hill, which needs no explanation.
Alice undauntedly pushed me to a new course record for the male wheelchair category of 31:09, beating a man called Ron, who is a self-propelled participant, by over 10 minutes!
She was rewarded with chocolate and banana pancakes at a lovely vegan cafe, and I had the breakfast platter and some Welsh cakes to take away.
During our meal, we were discussing how she does all the work, but I get all the course records, and she said, "There's no me without you," and I got all emotional. I'm sure she hadn't made it up, but I'd not heard it before, and I blubbed all over my hash browns. She has to do so much for me at home and on our travels but still refuses to take the credit for all the PBs she pushes me to.
Later, she pushed me along the promenade, and we stopped for Gavin and Stacey photo opportunities at Marco's cafe and Nessa's arcade, and we sat on the wall of the colonnade outside Boothy's.
We were staying at Barry's Premier Inn, renamed The What's Occurr-Inn – genius!
We met three ladies also from Hampshire, who were doing the same parkrun and 10k and the Gavin and Stacey-themed weekend; we then went on the roller coaster (life is short so why not!) and the ghost train at the seaside funfair before a few relaxing hours people-watching and drinking coffee in the sunshine.
On the Sunday, we took part in the Barry 10k, and again it was hilly, but with my encouragement and water-passing skills from my buggy, we got round the course. We had so many encouraging shouts and enthusiastic applause from the crowd, which spurred us on to an amazing finish time of 59.54. Under an hour, in that heat, pushing a grown man up those hills – there's no me without her.
Afterwards we actually met Ron and told him that we had beaten his previous record for the parkrun, and we shared some banter about self-propelled and assisted wheelchairs. We saw another assisted wheelchair team, Hayley and Jonah, out on the course, which was good to see. We also met another self-propelled racer called Les, who we are planning to see again at the Great South Run in October.
I thanked a guy running in an MNDA vest for his kindness, and we also got talking to Deborah, whose mum has just been diagnosed. She's going to look into getting a Delichon chair like mine so her mum can continue to be involved in running, like I do. We also met and congratulated our three G&S friends from Rushmoor in Hampshire – tidy.
Our train journey there was very nice. We were put into first class, and it's a very scenic route, hugging the coastline from Gloucester to Chepstow and then passing the Severn Bridge.
Unfortunately, on the way back, due to a strike, we had to get a rail replacement bus from Cardiff to Bristol. The train staff were very helpful and actually ordered a wheelchair-friendly coach for just us. Alice sat behind the driver, who didn't say a word, and I sat in the adjacent aisle seat.
Not a word was spoken for over an hour, as the eerily empty coach trundled along. I texted Alice as we went over the Severn Bridge, and we laughed about the time we'd driven over it before.
I drove into Wales and had a bit of a panic attack over the height and distance of the bridge; I could hardly feel my hands on the steering wheel as I froze still. On the way back, Alice said she would drive, but the very same thing happened to her. We only use the car on short journeys now and always take the train when travelling.
Finally the building work is finished, and my downstairs bedroom and wet room are habitable. I've had my first sit-down shower in the new wet room, and with Alice's help, it was a success. The toilet isn't magic yet, while we wait for the electrician to sprinkle some glittery dust over it, but it works as a conventional toilet, so I no longer have to stay upstairs while I'm alone.
I'm planning to continue to sleep upstairs for as long as I can, so we've put my profile bed on hold for now. I have, however, applied for my power chair and took one for a test drive the other day. It will be reconditioned as new and will not cost us a penny. As it's not new, we are aware of the cost that the previous owners have paid – MND sucks.
Over the next few days, Alice spent 15 hours cleaning after the builders didn't put down the dust sheets that they said they would. I felt very guilty not being able to assist as she cleaned every floor, surface, shelf, and ornament. Even the plants needed cleaning. I did, however, shout words of encouragement between sips of coffee from my seat by the record decks in my new downstairs bedroom. We saw our dining table for the first time in months, with the half-finished Muppets jigsaw on it, that we last touched in March. Half an hour and a Kraken rum later, we were back in jigsaw mode.
Alice managed to connect my decks, mixer, amp, and speakers together correctly the first time, and I've been able to play my new additions that I've acquired since the decks have been in storage. First on was my friend Paul's new album, Between the Covers.
We've also been able to get out on our newly block-paved back garden and sit in the sunshine that we've had recently, accompanied by Teddy, enjoying the warmth of the tiles. Anna popped down from London to see me and we enjoyed sitting outside for the first time in a long time.
My feeding tube, which we've called Phil, is now two weeks old, and Julie from Nutricia came to rotate him for the first time. Surprisingly, it didn't hurt at all, but she was worried there was an infection on the outside, so I'm on a course of Flucloxacillin. Now Alice has to repeat this rotation procedure every day, as well as feeding him the MND Smart research trial drug Amantadine (or is it a placebo?), then flushing him with water. She doesn't mind, as she's a nurse and has dealt with far worse before.
Danielle, my speech & language therapist, came and assessed my speech and swallow, and we agreed there is no slurring or slowness in my speech, but she did notice a slight deterioration in my swallow, which I'm also aware of.
Alice has this week had a carer's assessment with the council. She's now on their books as a registered unpaid carer and will send her an ID card for if she ever needs to provide evidence of this role. It will also get her into some places for free, as my carer, and in theory, should mean she has better access to GP appointments.
We've also finally got around to making our wills and signing my lasting power of attorney forms, which will allow Alice to make decisions on my behalf if I become incapacitated and can no longer express my views. Alice had tried to do it herself online but found it a bit bamboozling. When she mentioned this to a palliative care nurse, they referred us to the Citizens' Advice Bureau. The next week, a lady from the CAB came out to the house and helped us fill in all these forms within an hour, which was impressive. She filled it all in online and was even kind enough to drop off the printed forms the next day - what a brilliant service!
The parkrun at Meon Valley on June 21st was an important one to us, as it was global MND awareness day, and we wanted to do our bit. We wore the orange and blue, which represents motor neurone disease, and we encouraged our friends to do the same. Alice was invited to say a few words before the start, and she asked for everyone to come and say hello to us and to not be afraid to ask us anything about living with MND.
Carlo, whose dad died of MND and has since run marathons dressed as the Cookie Monster, raising money and awareness, pushed me, accompanied by his son Morgan, Alice, and lots of our friends.
A group of lovely ladies wore my MND Can Get In The Sea T-shirts, so thank you, Claire, Elizabeth, Ruth, and Caroline. There are a few small sizes left, so if anyone wants one for a donation to our JustGiving page, let me know – you too could look as cool as me.
As it was MND day, we had been doing a bit of filming in the run up - just clips of us doing daily tasks such as getting up the stairs, shaving and trying to get dressed. Alice put it all together with a voice over and the video so far has been viewed over 3000 times. Plus shared 30 times.
You can watch it here:
We knew it would be hard to watch and I think a lot of people hadn't realised how weak I am now because they saw pictures of me out and about smiling on Facebook but not me at home trying to put a t-shirt over my head. So this is how we raise awareness of the disease and as Alice said at parkrun, if you want to know something, just ask us! Whether it's about symptoms, diagnosis, wheelchairs, caring, support or adaptations. We need to have these conversations. After parkrun we were asked quite a few things - from getting a similar wheelchair for a disabled school to our thoughts on the assisted dying bill. Nothing is off the table. This is life and there is no point hiding anything!
Alice also wrote the parkrun report and talked about MND and assisted running which you can read here:
Meon Valley Trail parkrun report
I have been rather remiss with the thank you's for donations to our JustGiving page recently so step forward...Lucy Abel, Christine Dilleyston, Caroline & Nic, Tom & Monique, Sally Rivlin, Karen & Maurice Daw, Cameron, Alan Valler, Pam, Gwen and Margaret Caroline B & Anne F.
And finally, Andy M sent me the fee for his haircut after his barber Ian Chase said that he would rather the money went to us. How nice is that?
We finished a fun-packed fortnight, with a cheeky little trip to the island to see my daughters and my mum, and it was lovely to see them and give them a kiss and a hug. I realised recently that once I'm wheelchair bound, I won't be able to give anyone a proper stand-up hug anymore, which is very sad. In the latter stages, I won't be able to hold or kiss either, but that is a long, long, long, long way off. Hopefully.
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