25/07/2023 - 'One week on' by Alice

One week on... the most devastating and exhausting week of our lives. 

Firstly to thank everyone for the most overwhelming outpouring of love and support. Not just for David, but also for me. All our friends and family have been amazing 🥰

We've been through every emotion imaginable this week, from despair and denial and now acceptance. Our plans for the future may have been cut short but that doesn't mean that the future we do have can't be full of laughter and fun! And that's what we will do! We face this united and with positivity. We still have time and we will do as much as we can, while we can. And then adjust. And whilst things feel unsettled at the moment, what we do know with absolute certainity is that we will be together on this journey. In sickness and in health, we will be there for each other every step of the way 💚💚

Comments

Post a Comment

Popular posts from this blog

11/02/2024 - 'The highest of highs and the lowest of lows' by Alice

Image
Strap in for a rollercoaster - it's been a big, emotional and busy week.  'Monday Monday... so good to me'. Well, not really. I'm doing the blog this week and that's because David just couldn't face it and needs a week off. I'm sure our regular readers usually feel reassured that despite his disease, he's upbeat and positive but this week, started with him feeling down (and that's OK!). So was there a trigger to this low mood? Probably yes. And that was our check up with his neurologist at the hospital. We get a 30 minute appointment and as usual, we were joined by Clare, the MND care co-ordinator for the area. The consultant starts with the same question he asks every time - 'what's changed?' and we have deteriorarion to report. David's hands are becoming weaker and every day tasks are becoming harder (if not impossible). Not only that, his arms are failing him so his overall strength is weakening. He had been packing up his percus
Read more

18/02/2024 - 'My running days are finally over' by David

Image
In a week where both Alice and I really wanted to rest and relax, we unfortunately did neither. Alice is suffering from a bad back, and I was still recovering from my running and musical escapades last weekend, so the thought of sorting, boxing, and transporting to the new house wasn't something to look forward to. With the help of family, including Fin, who used all his lego building experience to help assemble units and desks, we have made a good start though. Unfortunately, my leg strength has deteriorated and on Monday I walked back from the new house to our old house on my own as Alice and Fin were busy assembling furniture and after only a few minutes of walking, I felt unstable on my feet, and I was lifting my left foot in a strange manner as I walked. Admittedly, I didn’t have my stick, or my shopping trolley, or the hand of a good woman to hold onto to steady me, but it was very disappointing and left me in a low mood. Amidst all the emotions and household possessions arou
Read more

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

Image
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 horrible
Read more