So much going on. Harder to get out of my tipping chair, showering trickier, care costs, trust lost, toilet a huge challenge, a fall in the lounge (very helpful paramedics), family, dignity. Valentina suddenly helps more at home (fantastic), a care company is engaged, we look for help inside and outside our family. ‘Time to put your daddy to bed’; I remember saying that to my kids a few years ago. Waiting, part of it. Good to stop, but we usually want to go at our pace. Rebuild the trust.

‘How are you?’ Normal question; want the long answer, the short one? Depends when you ask.

Trip to Florida reignites faith in God. I’d let it slip and now feel how much I missed it. There has to be a purpose to getting a disease at my age. I rest knowing He has one for me, and pray for a miracle. 

Great to hear French yesterday as Gilles, Noelle, Alexandre and Greta come over. I miss speaking and listening to my beloved French, German, Italian and Spanish. Shout if you know any good movies!

After being inside a lot, great to be out in the sun. Took the powered wheelchair to the West Herts for the first time, courtesy of the marvellous VW. A joy to sit in the sun and watch the kids play golf. Great to speak with some of the members and get some normality (whatever that is). How can it be ok to be in this wheelchair? For that time it was. At the same time, Jane brings us here, recycles the Christmas tree, does the groceries, meals, list is endless.

I realise it’s been a few months since I’ve been able to watch the kids at the putting and pitching green. So good to have the VW – thanks again everyone.


Author: Andrew Knowlman

I am a 50-year old father of two children, married to Jane. I live in Hertfordshire, UK. I was diagnosed with Amyotrophic Lateral Sclerosis in April 2015.

One thought on “Sunlight”

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