04/08/2023 - 'Succumbing to the lift' by David

So 2 weeks on from my diagnosis, I have started to enjoy this beautiful life!


Alice and I joined 15,000 others at Vegan Camp Out where all the food, stalls and artists are vegan and it was the first time we have camped since Bestival 2012 when I put the tent up and Alice started crying.
Great company, lush food and I got to see Bob Vylan, Sam Ryder and Romesh Ranganathan!


I ran a parkrun with no hills (from now on hills can just F.R.O.) I volunteered at a junior parkrun, high five'ing lots of kids and I finished the week floating blissfully and thoughtless in a sensory deprivation pod. 


The MND specialist nurse came out to visit us and we spoke about things like taking my pension early, disability benefits available and hospice care. More bad news this week too. After using the 7 floors of the hospital for the last 15 years as an exercise plan going up and down all day, I have finally succumbed to using the lift which is disappointing. 

My nurse told us, however that there are help groups with advice and support for Alice and I as we both go through this unwanted journey together so that is comforting to us.

Unfortunately, I stumbled a couple of times this week as my legs are starting to weaken but neither my consultant or my nurse can say how long I will continue to be able to walk as everyone is different so I continue to be very hopeful that I can walk my daughter Rachel down the aisle next April. 

Next time I see my mum I will leave with my dad's old walking stick as I may need it soon. I already have his Warrington RFC gilet, and his coat and Alice says I am morphing into him! If I can be half the man my dad was then I will be happy.


I'm trying to stay positive and make the most of every moment and I had a beautiful few minutes earlier today. I sat outside for my lunch in the sunshine and after I had eaten I closed my eyes, turned my face to the sun and listened to a Crowded House song followed by Dr Feelgood song and I did feel good! 
 
Alice and I now have 2 weeks annual leave so I may report from either the Isle of Wight or Wales in the coming weeks or I may just keep you hanging!

Love to you all and to slightly misquote Pyornkrachzark, the Rock Biter in The Never Ending Story "They look like good, strong legs don't they? I always thought that's what they were" x


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

04/02/2024 - 'MND takes everything...' by David

Image
It's 12 months since my 'Theory Of Everything' moment. Anyone who has seen the film with Eddie Redmayne playing the part of Stephen Hawking, will remember the moment when he falls to the ground with a thud and his world changes forever. Unlike a 120 minute film, my story is thankfully told in real time and in the last year, I have come to terms with my condition and, in fact, embraced life ever since. It's impossible to determine the actual date of my first symptoms as Alice had noticed twitches in my legs, and I had been getting leg cramps for over a year, but my fall while out running last January, training for the Brighton marathon was definitely a turning point, and from that moment on, we both realised that another marathon was beyond my capabilities, and that I should get my body seen to by professionals. We both hoped it was leg related, but unfortunately, as the tests, went on, it was becoming obvious, that it was neurological, and I was diagnosed within months.
Read more