15/09/2024 - 'A wedding, a medal and an apple crumble'

My new housemate and I slept through most of Monday. I'm not quite sure what Teddy's excuse is but mine was the aftereffects of the weekend's shenanigans. I didn't plan to stay in bed all day but my body just wanted to rest, a common complaint of MND sufferers. Teddy found a window ledge up high, which catches the sun, while I went for the more traditional bed, and we stayed there all day until Alice came home to her snoozing boys. 

I didn't do much more during the week either. I seem to have got myself in a bit of a routine of resting during the week then going bananas at the weekend!

The small tasks that I can still do like cooking the evening meal and the washing up really tire me out and I can't stand for too long. Alice has become my sous-chef, opening jars, carrying heavy saucepans, and mashing the potatoes. I did however, train as a chef on leaving school and worked in cafes, hotels, and restaurants for many years, so she does get well fed.

We attended the evening MNDA support group meeting and Alice and I handed over £300 from the sales of the charity album that I curated and all the proceeds are going to the Southampton branch of the MNDA. I also have £400 that was raised by sales of a vinyl ep by the band I used to play in on the Isle of Wight, and these proceeds will go to help the island branch. All this money will go towards improving the lives of local sufferers, carers, and family members affected by MND. 

I am so grateful to my friends Andy, Anna, Charlotte, Fiona and Gordy for all running 60 miles in August for the MNDA, raising over £2000 between them! Fiona actually ran 120 miles, 60 for her and 60 for me. She even sent me a lovely card and medal! The next MNDA fundraiser is to walk your dog 75 miles in October and an old football friend of mine Andy, has already signed up. I've never had a dog so I'm not sure if 75 miles in a month is a lot? I guess it depends how long their legs are!

The only other weekday activity worthy of note was a visit from my lovely ex work colleague Anna. She popped around for a coffee and chat and to show me her new engagement ring! She also brought Teddy a toy too. On leaving, she was kind enough to drop off some bags of various cycle paraphernalia that I have accrued over the years, to a charity that supports cycling in Southampton.

This retirement lark does give me lots of time to do what I like to do; playing records, watching televised sport, cooking, reading, and writing. This week I have watched cricket and football, made an apple crumble from some cookers that my friend Sleepy gave me, and have brought my autobiographical writings up to date. Whether I or Alice documents the final stage of my life depends on my hands, the effectiveness of eye gaze technology, and probably, my health. 

So, onto the weekend, we ran parkrun locally this week, as we had a wedding to go to in the afternoon. Alice once again managed to run the whole route, despite not having run together for a while due to our now repaired flatty. In the finish funnel, we saw a lady in an orange MNDA vest which always pleases us, and we like to approach them just to say thank you if we can. Also while we were in the funnel waiting for our token, a man told us that his father had died of MND but that it was many years ago and the family weren't really told much about it and sadly, they didn't talk about it amongst themselves or their friends either. Because very little was known about the condition at the time, it seems that MND was a hidden and silent killer. No-one talked, or knew much about it, and people just deteriorated in the home, bedridden, and died. On our way over to the barcode scanners, we were approached by couple who told us they were so impressed by us overtaking them on the hill and asked if we had a Justgiving page. We shared the details and a donation popped up later so thank you to them! Alice wears a vest that says 'pushing against MND' at parkrun to raise awareness and it's certainly a conversation starter!

It is estimated that a GP will only see one person with Motor Neurone Disease in their whole career, which not only shows you how rare the complaint is, but also offers a reason why medics and the rest of society are still in the dark about MND.

These days, we still don't know enough about the causes or cure for MND, but thanks to the brave honesty and humility of a number of high profile sportsmen in the last few years, the profile of the disease, through exposure, awareness, and fundraising has been raised, and we are all aware of the challenges that families face when a loved one is diagnosed. 

The wedding we attended was between Emily, one of our fellow runners and her girlfriend Vee, and we shared a lovely afternoon and evening with their families and friends. It was held in a converted barn in the Hampshire countryside and it was a delightful, laid back wedding. We were entertained by a folk group, a singing ensemble, and a lone flautist. We ate pie and mash, drunk Emily's home brew beer and the sun shone down on the beautiful newlyweds. They chose a simple ceremony and instead of the traditional vows, they each wrote and read out their own personal vows to each other and tears flowed all around.

Alice and I have always loved a wedding,  and while the love, the laughter, the tears, and the food are great, the part we love best is the dancing in the evening. We both like to dress up and give it some emotion on the dancefloor, and we have the photographs to prove it, and the memories to share. Unfortunately my diagnosis has all but brought that to a literal standstill. With my stick and Alice's hand, we made it on to the floor and we shuffled around to the disco beat, but in the end we resorted to the slow dance position. As all others around us were cutting rug and making shapes, Alice and I were hugging each other close and it felt really nice. As we slowly spun, we reminisced about our previous dancefloor exploits, and we laughed at the memories. All the time though, we held each other tight and didn't want to let go. We both know that once I'm in a wheelchair, our dancing days will be over. 

Because of the strength that I am losing in my hands, my handwriting is very poor now as I don't have the power or dexterity to move the pen to where I want it to go. I wanted to write our wedding card to Emily and Vee though and I'm sure they will appreciate the thoughts I expressed, even if they have to work hard to read the words. 

Poor Alice had to rise at 5:30am on Sunday to take part in the 18.6 mile Big Sky event in training for a tunnel marathon - dont ask! Which left Teddy and I to snooze the morning away. I did make her bangers and mash for tea though. Teddy did nothing all day, apart from sleeping and looking cute. 

I recently gave my daughters a USB stick each of all our old photos I had managed to retrieve from a laptop and they have both enjoyed reliving old memories. I hope they will be able to look back on these photos with happy memories in years to come and hopefully show them to any grandchildren. 

Because the weather hasn't been great recently, and also because Teddy isn't allowed out yet, I hadn't sat outside in the garden for over a week, so as the sun was shining, I took my morning coffee outside this week but was aware of a change from Summer into Autumn. The wind was a little cooler, the sun a little lower, and there was a lovely smell of Autumn in the air. I sat back and closed my eyes, with the sun pouring over my face and just listened to the sounds outside. Birds flying overhead and singing in the trees, the wind blowing the leaves and bushes, the sound of a distant dog, but no human impart other than the hum of traffic far away. 

It was lovely and I stayed there for longer than I had anticipated. I sat there thinking about everything and nothing, and I smiled with contentment. I think I was maybe saying goodbye to the Summer - a Summer that will be very different to any others that I get to see. I knew that this year would be my last being independently mobile, and I am pleased that I have enjoyed lots of morning drinks, and lazy afternoons in the sunshine of our back garden. Next Summer I expect to be in a wheelchair and I probably won't be able to make myself a coffee or cover myself in factor 50, so even though I have no idea how life will be for me, I do know that it will be different. 

Edit: The very next day Summer returned and I sunbathed all afternoon! That's the British climate in a nutshell!