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


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