03/11/2024 'Calling Planet Earth' by David

My little baby 23 year old daughter Anna came down from London to see me this week and it was lovely to see her. She has been three times to the new house, it has rained three times and not once has she brought an umbrella - kids eh? I made vegetable soup and cheese scones for lunch and we spent a lovely afternoon together drinking coffee and catching up. 

Anna hadn't met Teddy the naughty cat before, but within minutes, she was in love with him. He's the bane of our lives and spends most of his waking hours wrecking the house, but we do love him and are so glad to have him. 

Anna is running the Brighton half marathon next March in my name for the MNDA and her training is going really well. Her first half marathon in 2022, which we ran together in Southampton was my last and I'm so proud of her for doing this.

Staying on the fundraising theme, a friend and former football team mate has raised £330 for families affected by MND by walking 75 miles around North Wales and the Isle of Wight in October! Thanks Andy and Cassie!

The latest challenge to raise funds to find a cure for this hideous disease, is to complete 5,000 squats in November and my daughter Rachel and hubby Max are both a couple of days in!

After saying goodbye and seeing Anna into a taxi, Alice and I went out with the buggy for a walk. It was the first evening after the clocks went back and the autumn colours were beautiful, the air was cool, and the daylight was just fading. We were out for about an hour and I was wrapped up tight, while Alice was getting warmer and warmer as she pushed me up and down the hills of our neighbourhood. We were having a good chat and both agreed that we should do this more often. We've only used the buggy for running before when Alice can hardly speak as she is putting all her energy into pushing me around, so it was really nice to go at a more leisurely pace and spend some quality time together outside, away from the tv and mobile phones.

On Wednesday I had a busy day at the hospital with two appointments on the same day. First, I saw a Speech Therapist who gently pushed a scope up my nostril and down my throat to see if she could see anything that could be causing my recent sore throats and croaky voice. She said everything looked fine but did detect a slight weakness on one of my vocal chords, and although she said that is not uncommon, it is probably the start of muscle wastage in my mouth. Usually the first sign of MND in the mouth is a slurring of speech but my voice sounds croaky and feels slightly weaker so maybe I'm not playing by the same rules? Time will tell I guess. 

My second appointment was my four monthly catch up with my MND Consultant Dr Pinto and Becky, one of the MND care co-ordinators. It was the first time they had seen me in a wheelchair and I told him that I was only walking short distances now and that my hands are weakening too, but he was happy with my weight and my breathing and said that the fact that I was fit and relatively young (for someone with an MND) before my diagnosis, would probably help in my pursuit to stay active, happy and healthy for as long as possible. We mentioned that everyday tasks are becoming harder so Becky said she would send an Occupational Therapist round to offer advice and to discuss equipment that is available to help me around the house. Although they have been out to visit me before, I didn't really need their help back then, but now I do.  I really can't fault the care I am receiving from the hospital, the community and the MNDA. 

On Halloween night, we passed many children out trick or treating in scary costumes on our way to a meal out with our running club. We went to a vegetarian and vegan Indian restaurant in Southampton called Padharo and it was busy as it was also the start of Diwali. It was nice to meet up with our friends when, for once, we were not in our kit, all hot and sweaty.

On Friday my brother and his son came over to stay and the usual routine of Fin and Isaac disappearing upstairs while Alice, Rich, and I catch up while we watch old episodes of Top Of The Pops ensued. One episode from 1976 was really poor with weak disco tracks and awful ballads, but the next show from 1977 started with Modern World by The Jam and was much better.

The next day we all (apart from Fin, who stayed in bed) went to Southampton parkrun and Isaac, and Alice and I, all got PBs for the course while Rich was the photographer. Alice was not impressed that despite crossing the line together, my time was 4 seconds faster then hers!

A coffee and a hot chocolate later, they were back off to the Island, while Alice and I were packing an overnight bag for a meal, show, stay over and breakfast at a hotel nearby. 

We were entertained by a really good seven piece new romantic group and they played Spandau Ballet, Depeche Mode, Duran Duran, Gary Numan, Ultravox, Human League, Tears For Fears, Soft Cell, and Eurythmics. We would have liked to have danced all night but unfortunately that's not possible anymore so we sat and enjoyed the show and watched the packed dancefloor enjoying themselves. We got up for a slow dance to True by Spandau Bogey's (as we used to call them back in the day) which was lovely. I held Alice tight because I love her, but also because I'm liable to fall if I don't. She always catches me and never let's me down.

It's been a strange week for us. We came away from the hospital feeling really positive and were actually discussing the possibility that I might outlive the average of 2 to 5 years after diagnosis, which would obviously be a gift. Motor Neurone Disease kills a third of people within a year, and more than half within two years.

Unfortunately though, by Friday my hands and more specifically my legs were very weak and I felt despondent.

With my stick and Alice's hand, my walking is now down to about two minutes before I have to sit down, and I'm finding it hard to cut my food and get the food to my mouth. Using my phone is getting difficult, my handwriting is very poor too and I was saying to Alice just yesterday, that it's hard to accept that I will be writing my last letter or birthday card soon. 

We both know that there are sad days ahead so we are determined to enjoy anything and everything while we can, and we are.