21/07/2024 - 'One year on' by David

Well I made it! After successfully fulfilling my first target of being able to walk my daughter down the aisle in April, my next goal was to still be walking on the anniversary of my diagnosis and on Wednesday, although my legs are definitely weakening, I managed, with help from my rollator, to walk to the bus stop on my way to the hospital. Coincidentally, on the very day last year that we were given our devastating news, I had a respiratory appointment and Alice came out and met me at the bus stop. 

I was feeling okay a year on from our 'D-Day', remembering what we have achieved in the last twelve months, and looking forward to all the things we have planned for the next twelve, but Alice really wasn't looking forward to the day and was quite down for a few days beforehand. Luckily, almost all of my observations and results from the appointment were very good, which made us happy. 

I hadn't lost any weight since the last appointment, and my BMI is OK at 20.7. My blood pressure of 110/80, with oxygen sats of 98% were both very good. The only disappointment was a heart rate of 89, which isn't bad in itself, it's just that when I was running marathons two years ago, I had a resting heart rate of 49! Alice had to remind me, that I do virtually no exercise these days, and my daily step count is in the hundreds rather than thousands. 

I passed the cough and sniff tests, and the results of my blood sample came back fine. They took the sample from my ear lobe, and Alice thought it was hilarious that they applied deep heat to warm the area up. Of course, she had to take a photo! They punctured both earlobes and Alice told me it looked like I had earrings on which also amused her.

I mentioned that my voice is a little weaker, and that I get a dry mouth during the night, and they want to refer me to the Speech and Language department for assessment. I will definitely need their help at some point, so I might as well get my name on their books!

Being at the hospital gave me the opportunity of meeting up with my old colleagues for a coffee so Alice and I went up to my old office, and everyone was glad to see me. I had won the sweepstake for the football European Championships with Spain, and was handed £50! - the coffees were on me!

That evening, we decided instead of dwelling on the day at home, we would go out for cocktails, tapas and cinema. We enjoyed the sunshine in ocean village and talked about the year and what's to come. Alice enjoyed a spicy margarita which I thought was awful and I had a vodka cherry coke. We then went to Harbour Lights to see Moulin Rouge. I enjoyed the film and Alice thought it was awful. 

Earlier in the week, I had been to the monthly daytime MND support group meeting, and it was very busy. As Alice is at work, I need a lift to get there and luckily, there is a couple who live close to us that pick me up. Marlene has bulbar MND (I have spinal onset MND), and Mick is her husband and carer. We have made so many friends at these meetings, and obviously we have lots in common, so lots to talk about. It's not at all sad or morose, and we all have a laugh and enjoy each others company, sharing stories and experiences and we all benefit from it. We have a day out at a National Trust property, a boat trip, and a day at Paultons Park all to look forward to soon!

On Thursday I had a lovely afternoon in the company of our friend Jon, and his adorable dog Jasper. He came round to watch the Tour De France (Jon, not Jasper), and we ate doughnuts and enjoyed the cycling, while Jasper snoozed between us.

I've never had a dog and don't know much about looking after one, but he was so well behaved, fluffy and cute. He's the unofficial mascot of our running club, and I think we have all fallen in love with him (Jasper, not Jon).

I spoke to my daughter Anna, this week. She was sitting by the Thames in London in the sunshine on a day off work, and we had a nice chat, telling each other what we had been up to, and laughing about some nonsense or other. It was lovely to hear her voice, and we are meeting up next week! 

On parkrun day (formally known as Saturday), we ran Southampton and saw two people running in MND tops, and we thanked them both. Alice ran the whole course without walking, even the hills! She was happy, and I was proud.

We went for coffee and I had another cuddle with baby Bear.

On Sunday, My friend Darren and I DJ'd at our favourite bar, Overdraft and between us we did a 6 hour set.

Darren organised it as a fundraiser for the MNDA, and his employer agreed to match any donations up to £500. It was a great success with lots of our friends, including my brother Rich, coming over from the island, Winchester, Portsmouth, and locally in Southampton to support us. 

My friend Mave, who swam 6k in May for MND presented me with the towel robe that she had printed for her challenge.  It was lovely see such good friends and we laughed, hugged, and took the mick out of each other as all friends should do. 

We played some belters from all eras, had them up dancing on a Sunday afternoon, and as well as Darren and I, we had a young, budding DJ in the making, Holly playing some of her records. She is so supportive of my illness, has made all her school friends aware of Motor Neurone Disease, and wears her wristband with pride.

With donations and his employers contribution, Darren has raised over £1300 which is absolutely amazing. I really do have beautiful friends. 

Symptoms wise, I am starting to struggle with simple tasks like pulling my socks on. Not only are my hands weakening, but the muscles in my stomach, cramp when I bend down. Alice takes care of the cleaning tasks in the house but I still have 2 important jobs to do - cooking the dinner each evening and preparing the Sunday breakfast in bed. I'd been doing well but unfortunately today was the first day I needed help with one of these tasks as I couldn't carry the coffees up the stairs and had to call Alice down to help me out. 

I am wondering if the muscles in my legs and hands are having a race to be the first to fail me. I'm just hoping that someone can keep moving the finish line further, and further away. 

I recently asked Alice to film me trying to do everyday tasks to show what it's like living with MND and the video was viewed 3000 times on social media. I know it was hard to watch but I thought it was important for people to see the struggles that life offers on a daily basis. 

So a year on from my diagnosis, I am feeling very content and thankful that I am still walking, talking, eating and enjoying life. One morning this week, I sat outside in the sunshine, while most of Britain was hard at work. With a cup of coffee in my hand, while listening to David Bowie and looking up at the blue sky, with the trees swaying and the birds flying, I smiled to myself and just took it all in. 

I have so much love around me, and I'm grateful for all that I have.

What a time to be alive, and what a time to be me x