Posts

26/11/2023 - 'What is MND and what does it feel like?' by David

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Recently, the blog has been about exciting travels, reunions, concerts, meals out and parties, and long may that continue as Alice and I make the most of my mobility and my time. This week though, I thought I would explain a little about motor meurone disease and describe how the daily life of someone living with MND actually feels.  I have spinal onset amyotrophic lateral sclerosis (ALS) MND, known as Lou Gehrig's disease in America, a painless but ultimately, terminal disease.  MND is life-shortening and there is no cure. Although the disease will progress, symptoms can be managed to help achieve the best possible quality of life. MND affects up to 5,000 adults in the UK at any one time. MND is very rare with only a 0.3% risk of getting it across a lifetime. It can affect adults of any age, but is more likely to affect people over 50. I am grateful that I don't have something like an inoperable cancer with all the painful treatments that are associated with such a hor...

19/11/2023 - 'We got married! (again)' by David and Alice

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Back from Blackpool, we had only one night in our own bed before we travelled over to the island to the same hotel where we tied the marital knot six years ago. We met some friends on the red jet who were also travelling over for the big day and couldn't believe it when the steward got on the mic to announce to all the passengers that 'David and Alice are on board and heading to the island to get married again'. This announcement was met with a big round of applause and a few whoops from all on board.  We decided to renew our vows to show everyone that we will be entwined together, in love, until the end, and Alice wanted to ensure that all my family and friends knew that she would do everything she could to look after and care for me. I changed my shirt but wore the same suit, while Alice wore a boho dress she had picked up in a vintage emporium. We chose the date as it coincided with the day my dad would have been 91, so we raised a toast to him an...

13/11/2023 - 'A coach and a springy floor' by David

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Since we got together, Alice and I have loved a coach trip. We don't have to drive, all the days are organised, and we can just relax, while we listen to our music, nibble, snooze, talk and laugh. Of course, now that I have MND, a coach trip is perfect, as I can't walk too far and Alice is always there to hold me steady or pull me up a hill. We set off for Blackpool on Monday and the journey north was lovely. The array of Autumnal colours on the trees, reflected from the low sun was just beautiful and we watched counties come and go as the sun and rain fought for supremacy.  Alice and I had a Spotify jam going where we listen to alternate songs from both of our liked songs library. Our taste is usually quite similar, but sometimes I have to listen to Girls Aloud and she has to listen to Frank Sidebottom but hey-ho! After a few stops at the services for a coffee or a McPlant, and having listened to La Roux's Bulletproof, The Jam's I Need You (For Someone), ELO's Diar...

05/11/2023 - 'Star Bakers, the big smoke and code cracking' by David

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My week started with a win! Our colleagues have organised an office bake off, raising money for the Motor Neurone Disease Association and this week, it was traybake week. Alice and I made a berry crumble slice and in a blinded taste test, we were judged the winners! The Bakers win the bake off! That it was vegan and gluten free was a double win! That evening, we went to view a house which fitted the bill perfectly. After an anxious wait, we were thrilled to hear our offer had been accepted. We've had disappointment before so don't want to get our hopes up too much but if all goes to plan, we will have a lovely house which has an area for me to live safely in without having to go up any stairs. Fingers crossed and watch this space for updates.... I hadn't seen my youngest daughter, Anna for over a month so we were both excited to have a day off together on Thursday and I booked my train ticket to London and we had plans to walk through a few of the c...