What’s going on in Kings Langley?

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‘Spar has new fridges,’ my friend answered. We laughed. It’s all a bit absurd. Meanwhile, eating is now a huge challenge. Swallowing causes coughing, I spit out the food. On Friday, I told the nurse that I wanted to move to 100% PEG feeding. She asked if I was sure, and I said you’re never sure about a decision as big as this. Very sad, and one more thing for us all to deal with. I always took care to eat healthy, tasty and organic food, which makes it very hard to accept being kept alive with food, which is not real. I’ll still have yoghurt, fruit puree and the occasional very moist meal. It’s actually a relief to not rely on food.

Soon after diagnosis, I was told that I would feel tired. I’ve never experienced exhaustion like this.

On Thursday, I was at Woody’s with Sarah and Woody, and enjoyed the wind blowing the trees. After, I went to the canal and caught the smell of diesel, wood burners, cigars and pizza. I think that I notice smells more, because I am in the care home so much.

I see more and more how disappointing this is for Sebastian. I would feel the same. He asks questions about how much longer he’ll have his dad. Yet, when he comes, he knows what I might need and asks me. Very hard for him and for Jane. There’s very little good in this illness, and, in case you were wondering, it all gets harder as it progresses. If you get this diagnosis, you are right to feel bad.

Look Who’s Back is a hilarious film about Hitler coming back to modern day Germany. Goodbye Lenin features a woman whose family pretend that the Berlin Wall never came down. Trainer! is a documentary about being a football coach in Germany. Family Fever is a clever drama involving two families, where the children behave better than the parents. Un et Une is set in India, with some beautiful scenes. Concrete Football tells the story of how the Parisian suburbs produce talented players. Il a déjà tes yeux is about black parents adopting a white baby, and tackles prejudice in a funny and heartwarming way. Un peu, beaucoup, aveuglement is about a relationship where the man and woman don’t see each other.

In case I forget to mention it, a few words in praise of the morning school assembly. Less a feature of schools today. 800 boys singing, a reading, announcements, school coming together for 20 minutes. I’ve realised that I learnt hundreds of hymns. They recite their verse, have Upper School choir and News, amongst other things, to start the day at school now; that’s good too.

I bought Valentina some books for birthday. To Kill A Mockingbird, The Catcher In The Rye and the story of a North Korean girl escaping oppression. Happy 15th and enjoy these classics.

Visits from my parents, while of course great, are exhausting because of my mum’s increasing dementia and understandable inability to cope. There are only so many times I can answer the same questions with eye gaze. What’s to be expected at 89? Sebastian has a football partner on the care home lawn in my dad.

A few incredible journeys, in case I forget. Greyhound overnight bus from New York City to Greensboro, NC; train from Bangkok to Nong Khai; plane from Santiago to Bogota; train from Mumbai to Goa; bus from Kathmandu to Pokhara, 12 hours for 125 km.

Train from Hook of Holland to Aarhus in frozen January; plane from Washington, DC to San Diego with my parents in 1990; bike from York to Lulworth Cove with Ian in our teen years.

Car drive from Havelock, NC to somewhere near Knoxville, where my 1976 Plymouth Fury broke down; plane from Milan to Rome for work; car from Sydney to Parkes, NSW, with Jane’s mum.

Bus overnight from Adana to Istanbul; car from Istanbul to Erzurum; train from Casablanca to Marrakesh; plane from Fes to Casablanca; ferry from Portsmouth to Le Havre; train from London to Paris; bus from Amman to Petra; car from Knoxville to Chicago via Texas and California; hitchhike from Bamberg to Hamburg; car from Bamberg to communist Prague; school bus from York to Salzburg and back; ferry from Harwich to Hook of Holland; car from Kings Langley to Saint Bon Tarentaise; bike from York to Kings Lynn; flight from Madrid to Sao Paulo; flight from London to Hong Kong Kai Tak, train from Jodhpur to Jaiselmeer, bus from Jaiselmeer to Khuri.

Of course, many great memories are from travelling around the cities I lived in. Commuting over the Bosphorus and Sydney Harbour, driving in Istanbul traffic, Bosphorus ferries, trams in Milan, my scooter in Madrid and the fantastic metro, bike commuting from Magagnosc to Sophia Antipolis.

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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 to “What’s going on in Kings Langley?”

  1. I am constantly amazed by the way you and the family are dealing with such an incredibly difficult illness.

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