26/05/2024 - 'A new MWC course record, a thermal bath and swollen feet' by David

I have said before that the strength in my legs and hands from week to week, seems to fluctuate between being okay and being poor. Some weeks I am encouraged, some weeks not. Well, this week both Alice and I have noticed that my legs in particular are much weaker.

It may be because I have been out every day this week when normally I would have a few days at home, but I’m afraid, we both think not.

It has been a tiring week for both of us but also a really enjoyable one in which we have spent a lot of time together, enjoying life. 

It started though, with a solo outing. I used my rollator to get to my local Sainsbury's this week and it was a success. There is a Starbucks next to it so I stopped for a sit down and a coffee before I went shopping for ingredients for a birthday present for Alice and was surprised at how much you can fit in to the space under the seat.

The ingredients were for cookie dough which Alice loves, and not surprisingly, she did! I also made her a card which wasn't easy as drawing, colouring and writing are now quite difficult.

Her birthday was on Thursday and we spent a lovely day in Bath.

We caught the train and it was a very scenic route as the train runs parallel to the river for a lot of the journey, with vast swathes of green fields and picture postcard villages to also enjoy.

I took just my stick, as I could hold on to Alice's arm as we walked around the city and on arrival, we consulted the trusty Happy Cow app to find us a vegan cafe. The first was having their kitchen refurbished so we went to Plant.Eat.Licious and we were so glad we did. I had a croissant and Alice had leek and potato soup for breakfast! Well, it was her birthday!

Our main reason for the trip was a visit to the famous Bath Spa where three natural thermal springs meet, so with our bathers in our hands we entered. As well as the spa, there is a floor of sauna, steam, ice and relaxation rooms, and even a rooftop pool, which was really cool. We were particularly impressed with their disability facilities including wheelchairs for the treatment rooms and poolside seats which lower you in to the water. We had a great time and felt so relaxed afterwards, we plan to return in the winter when the rooftop pool will be dark by 5pm and we will stay over as we both just wanted to sleep after our session.

After lunch back at Plant.Eat.Licious, we walked through the town, past some impressive street art, back to the train station for journey home. Alice had enjoyed a nice birthday.

She was off on Friday too so we decided to try out the wheelchair that the council had dropped off a few weeks ago, and we wished we hadn't. 

As I can only walk for about 5 minutes now before I need to sit down to rest, the days of the stick or the rollater are I'm afraid numbered, so we thought we better try out my new piece of equipment. The idea was for Alice to push me on the route from our house to the shops on Shirley high street, a route we have loved to walk for the last decade, but it was pretty obvious pretty soon that this was not going to happen. 

Alice found the wheelchair much harder to push and navigate than the running buggy and after we got about halfway, we decided to jump on a bus. I suppose we should have guessed that a basic wheelchair wouldn't compare to a £3,000 sports buggy, but it was still a bit disappointing, though at least now we know. We are lucky to have the option of both so we will maybe use the wheelchair for shorter flatter distances.

One thing we did learn is how hard it is for wheelchair users and their carers to get around. We had to contend with manholes, cracks, dips, kerbs, people on their phones, hills, and many other obstacles that you don't realise are a problem until you are in that situation. If everyone had to sit in or push a wheelchair around a town for an hour, we would all be more appreciative of others disabilities. 

parkrun day (previously known as Saturday) was a lovely day. It started on Southampton Common with a warm, sunny 5k and Alice again had a chance to run free as Andy, one of the consultant anaesthetists that I used to work with (and Alice still works with), pushed me round the course, and he was fast! Not only was he fast, he's so far the only person to complete the whole course, including hills without walking. If I had any hair, I'm sure I would have felt the wind going through it, as I sped, holding on tightly, to a male wheelchair course record. 

After we had finished, I was approached by a runner, who grabbed my hand and told me that I was an amazing man! He said that he had been a carer for a friend who had MND many years ago and felt the urge to come and speak to me. The MND family are a lovely, caring group of people. 

Once home, we did a bit of buggy and wheelchair maintenance in which Alice did all the hard work while I was her mechanic's mate reminding her "righty tighty, lefty loosey" every time she picked up a spanner. 

We then sat out in the sun with Alice's sister Ellen and her boyfriend Shaun, and Alice and Shaun exchanged birthday presents. Poor Shaun got a copy of my band's record, but Alice got a lovely home made rucksack made out of charity clothes, and a framed set of signed prints of Harold and Lou from Neighbours (an Australian soap which was very popular in the UK). It's going up in our bathroom! 

I then watched and enjoyed the FA Cup final while Alice potted her sunflowers,  the ones that the slugs hadn't eaten. She was pretty ambivalent about the copper slug tape that I gave her for our 7th (copper) wedding anniversary last week, but now she's realising that sometimes practicality wins over romanticism! 

Alice has totally fallen in love with our new house, as have I, and I was really pleased to see her so happy out in the garden, pottering around like someone who knows what they are doing. We have always rented, so this is our first home that we own and Alice has become so house proud and amongst all the awful things that she has had to deal with in the last year with my diagnosis, it's heartwarming to see her so happy, which makes me happy.

On Sunday, we went on a boat trip on the MV Alison MacGregor, a charity run vessel, berthed in Southampton, that has been adapted to take wheelchairs, and they invited our local MND group on board.

It was lovely to chat with friends we have already made, and people that are new to us as we travelled out in the Solent and up the Itchen river.

We were invited to take the wheel and I was first in the queue! It was nice to see the city from a different angle as we relaxed in the sun. A perfect end to a busy week.

I will finish with our new found weeknight activity that we both enjoy, but one of us (me) enjoys more - Glee and a massage!

My feet have been swollen for a few weeks now and Alice has very kindly started to massage my feet with scented oils each night and it feels just lovely. We've started to re-watch all the Glee episodes that we used to watch with Rachel and Anna, when they were teenagers, after little Fin had gone to bed, in our Iittle Isle of Wight chalet. 

If we follow suit, we will be re-watching Father Ted and Bottom next - Grrrreat days!