I am in my first week of full PEG feeding. Challenge is to get the feed and liquid right. If I have too much, too quickly, then I throw up. Sebastian and Hannah made me some apple puree; I can still swallow that, prunes and yoghurt. Each mouthful is accompanied with coughing, and some inevitably drips down the bib. I found it emotional eating this food made by our son.


I’ve been wondering whether we’re really able and meant to deal with this. Without medical intervention, I would no longer be alive. I wouldn’t have to face the mental and physical challenges, but of course I would miss time with family, friends and community, and what I can still give and what they need. As a parent and husband, we never give up. I can feel them willing me to carry on. Don’t give up. The minister from our church came today, which was helpful. New books are on the way. God gives us strength in the darkest times.

Ils sont partout deals with stereotypes about Jewish people in a hilarious way. Perdiendo el norte is about two Spanish young men moving to Berlin. They end up learning what’s important, with some funny, thought provoking scenes.

Thanks to Hannah McCarthy and Caron & Gerwyn for looking after Sebastian, while Jane got her first break in eighteen months. Valentina is at Embercombe in Devon, ten days of living off the land. Thanks to the sponsors of the Lyke Wake Walk; this is what we are using the money for. I attended Sebastian’s parents’ evening, taking notes with the eye gaze computer. Hard to be around the other dads, who are giving their sons and daughters so much.


Wotfud 2 : Ve Arse 1. Alot of organisation and effort to be there. We were in the disabled seating in the Graham Taylor stand, about fifteen rows from the pitch. Despite the better view, I prefer being pitchside in the Rookery. More atmosphere, and I like being closer to the players. Part of live sport is seeing and hearing the effort. The crowd went nuts as the Hornets equalised and then went ahead. ‘Deeney, Deeney’. Well, he got GCSEs after prison, coming from a broken home, and he’s made it as a good footballer.

Great to be there. I liked seeing the joy in the face of thousands of people. They smiled at me as they walked past. Thanks Russell and Marta. Memo to Hertfordshire Wheelchair Service – please be able to order replacement parts in less than four weeks, it wasn’t easy driving for 500 metres through packed crowds with head controls. Russell parted the Red Sea as I came through.

Written right across the Elton John stand are these words.

And you can tell everybody, this is your song
It may be quite simple but now that it’s done
I hope you don’t mind
I hope you don’t mind that I put down in words
How wonderful life is while you’re in the world.

The fans can’t quite believe that Watford are fourth in the Premier League. At one nil down at half time, Russell said Watford two one, and so it happened. I have £5 at 1000:1 on Premier League victory. Shame, very big shame, local boys don’t get near the first team. Global businesses, forex sponsors, Chinese betting sponsors, Italian owners, Portuguese manager.

The church can be a force for good. Do stop and spend 38 minutes listening to BBC Sunday Worship from a cancer centre. You’ve got 28 days from October 15th. Tap here. 135

Come On You Hornets. Happy 15th birthday, Valentina.



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.

4 thoughts on “COYH”

  1. I’d better drop some more apples from our tree round for Sebastian to make puree. Powerless over ALS, such a cruel illness.

  2. It’s great to hear from you Andrew, I do stop for a moment to read your updates. I love Elton John and Your Song, beautiful lyrics. Thinking of you and your family, please tell them I am here anytime if they need anything nutrition, sleep, lifestyle related support. Much love, Colette

  3. Andrew great that you were at and enjoyed the Watford game and I was also interested to see that Boreham Wood also won in the FA Cup and I know that you enjoyed visiting them last year.
    Good to hear from you also about the things that Valentina and Sebastian are doing.They sound like very rounded young people.
    John/Gill Thaxted

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