17/03/2024 - 'Bye-bye Zippy but hello new wheels' by David and Alice

We have been in our new house for 7 days now and we absolutely love it! All the rooms are bigger, it's nice and light all round, and it has a downstairs loo too! Alice's dad and his mate Dean, have nearly finished the work required, and we are starting to unpack our stuff and make it a home. One thing that we are particularly looking forward to, is to be able to put up posters and pictures on the walls, after being in rented accommodation and being scared of making holes in the walls for the last decade.  

While clearing out the loft in our old house in readiness for our move, I came across ephemera that accumulates over the years. Photographs, football programmes, concert ticket stubs, scrapbooks, school reports, postcards and letters from grandparents, friends and old girlfriends, even my old diaries, going back to when I first started documenting my travels, and travails, my achievements and disappointments, and the important, heartwarming, sad or mundane ramblings, in 1980 in a Radio 1 diary.

Some things are memorable for a variety of reasons, and emotions, forever in your memory, and don't need to be written on paper, while others were just thoughts or feelings, written on a whim, or a quiet, mundane day, that are hilarious read back many years later. On the 23rd of May, the day that that Alice was born in Southampton, a 14 year old boy in his Isle of Wight bedroom wrote 'Felt ill, stayed in bed'. What an interesting and enlightening life I led! 

I've always loved writing, whether it be my thoughts, stories, lists, poems, song lyrics, or taking on the role of historian for the football clubs, musical groups, companies, or establishments that I have been involved in. This has continued into the digital age, recounting timelines and adventures on social media formats. I'm joint or sole administrator on six Facebook pages, and take great care and pride in the content that is published, which is then rewarded by the satisfaction reflected back onto me by the comments, and conversations that my words engender. 

You won't be surprised to read that I have written my life story, and it is documented, chaptered, and stored electronically, to be read or published at a suitable time. I have been writing, updating and rewording it for many years now and it has been very therapeutic documenting a life that has been nothing especially significant, but happy, enriched, and fulfilling none the less. It will hopefully be an entertaining read for friends and family, who are mentioned, and will remember certain events.

I also hope it will be interesting to those that only know me through this blog, and will be comforting to fellow MND sufferers or carers, to reflect that you can accept and be very content with what life has given you, before the ability to converse, verbally, or in written format, is taken from you. 

In readiness for my respiratory appointment next week, I had to wear a saturation probe overnight, which was sent to me in the post. The probe records heart rate and levels of oxygen in blood flow, which I will hand in at the appointment. MND sufferers' respiratory function needs to be monitored closely as the muscle wastage unfortunately won't stop with my limbs, and sadly, my breathing will become compromised as the illness progresses. 

I've been feeling very low this week due to my MND symptoms. Whether it's due to last week's 5k parkwalk, or just the natural progression is unclear, but my legs have felt particularly weak and just walking around the house and up and down the stairs was tiring, and although not painful, my limbs ache and I feel as though I may be moving to the next stage of this horrible thing.

With this in mind, I have decided that even walking a weekly 5k parkrun is unrealistic so Alice and I have put a plan that we have been thinking about for a while now, into action and I'll give her her own paragraph to tell you about it....

Hello, Alice here... When David was first diagnosed, we had it in our minds that he would run parkrun for as long as possible before switching to walking them and maybe naively on my part, I thought as David only gave up running a month ago, we'd get a few more weeks of walking before it became too hard. Well, unfortunately, that time came faster than we thought so it was seemed like time to look for a running wheelchair. Google pointed me in the direction of Delichon, a company in Dorset who supplied the chair Rob Burrow completed the Leeds marathon in, assisted by Kevin Sinfield. With average costs of £2700 for a basic model, the price was prohibitive so I turned to an MND Facebook group to ask where we could beg, borrow or steal one from and someone suggested approaching a charity called 'Challenging MND' for a grant. This charity was completely new to us but their website said they can give a donation of up to £2000 to help someone with MND achieve a dream such as mountain climbing or skydiving. Now David isn't keen on either of those things and as parkrun was more of an ongoing goal rather than specific event, I wasn't sure we'd meet the criteria but it seemed to be worth a try so I filled in their application form. 

Well, only a few hours later, I received a reply saying they anticipated a favorable response from the trustees so would pitch our case and we were later delighted to learn, they had agreed to fund the full grant of £2000. A quick online application to the MNDA for a quality of life grant secured us a further £500 meaning we only had £200 to cover which was a huge relief! I had ask my dad to measure David's back and legs to choose the correct model and then picked the colours. Can you believe they have straps and seats in every color apart from green! So we had to go with plain black which we can accessorise with green to make the vegan runners colours. In fact, our friend Claire has already started on a black and green stripey crocheted blanket for David's legs. 

We are due to attend a big vegan runners meet up in Bristol in May and part of this weekend is the Great Bristol Run. We had originally decided to cheer on the runners from the sidelines but the Great Run company have a brilliant inclusivity policy meaning they accept assisted runners (wheelchair users) and even give free entry to the runner assisting (me!). So we're hoping to get the chair in time for this and represent both vegan runners and people fighting MND and show disability shouldn't be a barrier to being included in sporting events. 

Back to David... So onto more good news this week, of which we have an abundance!

On Tuesday night, we walked the short distance to the local MND monthly meeting that is held in a local school, and it was nice to see all the sufferers, carers and volunteers after the winter break, when the meetings become online only. We discussed the upcoming boat trips out into the Solent that they arrange every year, recent and upcoming fundraising events, access to equipment needed, and the financial help available, and general good humoured chit chat. We all laughed, enjoyed refreshments and had a raffle. Everyone is so positive and it's comforting for me, to know that we are all being well cared for by our partners, family and friends. One of the ladies is wheelchair bound and her speech is slow and compromised, but her and her husband are always smiling and are an inspiration to us all. I am very lucky that so far my speech and swallowing are still not affected. 

On Friday, my big brother was 60!

Rich and I are very lucky to have a great relationship, and over the years have played music and football together, and shared a lot of the same friends. Alice and I travelled over to the island for a big birthday family meal, and Rich was in good spirits.

Alice got the late boat home so that she could go to parkrun at Southampton the following day and unpack the house in peace, while I stayed with my mum for the weekend.  Rich and I met up with our mutual friend Sleepy at the football on Saturday afternoon, watching the mighty Cowes Sports FC. They were awful in the first half going 2-0 down, then great in the second, pulling it back to 2-2, and a frenetic last 10 minutes saw both teams coming close to a winner. We stayed for a beer afterwards in the clubhouse with players from both sides, supporters and some great friends that I only see at the football. 

On Saturday night, I went out on my future son in law, Max's stag night. We watched the six nations rugby in the pub, followed by a trip to a curry house. It's actually his second stag do following a weekend away in Brighton with all his mates. This one was for all us 'oldies'! We dressed him up in a lovely frock and hat and he certainly turned a few heads walking through the town.

On Sunday, I finally said goodbye to Zippy, my beloved Citroën 2CV after 17 years. It's sad that I have had to sell him as I thought I would be driving him around for another 20 years, but I'm glad that he will still be driving around the island roads. The new owner Stephen, is married to a lady who grew up in Gurnard, the village that I grew up in, and will I'm sure, have as much fun with Zippy as we have had.

My trusty mechanic Adrian, and his wife Jan, helped with the transaction and we came away with some home made fig and apple chutney too!

As Adrian dropped me off at the ferry terminal, we watched a ferry just pulling out, so we retired to a pub to kill time before the next ferry. After a pint, and with my wobbly legs, I boarded the ferry home, holding tight to my stick, having felt all the emotions in the last 7 days.

The ups and downs of living a life with a terminal illness.