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Church? I find it’s a time when many feelings come up. Today I was upset, because of the difficulties I have been having with drinking in the last week. It’s very hard to accept. Drinking is a basic thing we do. I have been having most water through the PEG. I enjoy the sermons, singing and community of the church. I was always so closed to Christianity, and am pleased that changed. It’s worth investigating.

I watched Sebastian with his uncle Damien, over from Australia, at the golf club. The effort that goes into even a simple trip is considerable. Great to catch up, watch their pitching and putting competition and just be at the golf club. While eating lunch, there was a downpour, which created lakes on the practice green. A boy I know, was out there to experience the effect of the puddles on the speed of the ball. It kept raining, but he was oblivious to that.

I didn’t expect Sebastian to wipe my chin of gibble, as he calls it. He did. He drove me outside, and put my sunglasses on before I could ask. He asks me if everything is ok. He wants me to get better, ‘would you be ok to live for the rest of your life, walking with two sticks?’ Where there’s life, there’s hope, as a famous cosmologist said.

Valentina, away this weekend on a camping trip, also asks how I am and whether I need anything. This wasn’t meant to happen for at least thirty years, if at all. That’s MND. Very happy to hear she really enjoyed the hiking and camping.

My mum made it down thirteen weeks after breaking her hip. Great to see her, and well done dad. Being the son, but with MND. Roles.

I never thought I would collaborate with an illustrator on a book, but that’s what I’m doing. Sarah showed me the first drawings for The Fantastic Race. Hilarious, educational without shoving it down your throat and ensuring the reader still uses their imagination. I don’t see the hours Sarah spends, but I know it’s a lot. We review the illustrations, and, amongst other things, we aim for authenticity. The Subaru rally cars need to be blue, more of the Italian drivers need to wear sunglasses etc. I enjoy having my ideas challenged, because it strengthens the story. More than that, the illustrations add so much to the story. In case you want to listen to The Fantastic Race, it’s already available as an audiobook. Here is the studio.

 

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‘Music to move the stars’ is the title of the book written by Jane Hawking, recounting life from before she met our Stevie to the late 1980s. It’s fascinating to see things from her perspective. One day, I very much hope that Jane Knowlman writes about the last few years from her viewpoint. Reality is that she has become a single parent with no family around, supported by a few fantastic people, with a husband who continues to lose function. I think it’s admirable, to the power of a thousand, that she keeps going.

What must it be like to be a kid and see such a rapid change in your dad?

A friend of the family said it’s important just to let children be. Thanks to Jane’s, that’s how our kids were for most of summer.

Life goes on. Valentina volunteered at the care home, climbed at the XC. Sebastian played 36 holes in the same day, for the first time. They all went to watch the basketball in Hemel. Homework, school is back, class 5 and 9 now.

When I am out, and when I hear what everyone is doing, I see how different my life is, same for Jane, Valentina and Sebastian.

I would like to thank people who are supporting us financially, notably in France and the US. Also, thanks again to the sponsors of the Lyke Wake Walk.

Imagine a scenario for MND patients and families, where you didn’t have to ask. Instead, everything is provided at the right time. It doesn’t happen, because it costs more.

I am starting to get help from a person who looked after a guy with MND for five years. She ran the show until he passed away in May. It means that I can get out more. She is also helping me with trying to get state support to pay for her work. You will meet Marta, a native of the Czech Republic, soon.

I now have internet in my room. It took five months. If you ever need someone with tenacity, contact Ray. Without him, I would not have it. I told a friend at BT about the five months. He said ‘And? What’s the problem? You should be grateful you got an engineer too!’

Thanks to Moira, the hospice volunteer, who has read me 500+ pages of Jane Hawking’s book over the last six months.

Thanks also to Andy for stocking my bar, where you can enjoy beer, wine, a soft drink, accompanied by crisps, peanuts and cashews.

MND is all about muscles, so you might not think that it affects the senses. Sight and hearing are fine. Smell is less good, because I can’t breathe in as much. Taste is diminished, because I can’t move the food over my taste buds on the tongue. The biggest loss is I can’t touch, unless someone moves my hands. I also can’t put pressure on the ground with my feet.

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Some exciting news – in my opinion – in the world of books. We have signed the contract to publish the following two books:

Firstly, an English translation of Die Kleine Backstube and
Secondly, a real book version of The Fantastic Race, currently available on Amazon as an audiobook.

There is a lot goes into getting a book published, so we will be busy. I will let you know when the books are available.

I got a great email from friends in Tokyo, holding Die Kleine Backstube. Made me think it would be cool to have photos from everywhere else, where the book now lives. Thanks Beatrice, Cyril and Nico.

If you would like to take part, send your photos via email, andrewknowlman@gmail.com, and they will appear in future blogs.

 

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It’s the time of year for conker fights. Maybe you can win a few. See if you can have a tenner. Some boys at my school – Nunthorpe Grammar School for Boys – bragged that they had a hundreder. How could we know? There were some cheggie trees in the school grounds, and a few off Scarky Road. The key to success was getting your conkers rock solid. Most boys would leave them for days in malt vinegar. I am talking about the seed of the horse chestnut tree. Often a challenge was to find any cheggies, especially near school. The parents or bigger boys threw the sticks high in the tree. I would run under the tree to get what had fallen. Who would be fastest?

‘Fight, fight!’ This was a familiar cry in our school yard. Crowds would gather, fists would fly and a teacher would come. The crowds for the cheggie fights were also big, especially when a winning conker was involved.

Maybe you don’t know how the fights work. Skewer a hole, insert string about 20-30cm long, knot one end, tie a loop at the other, and you’re ready. One person holds their string, and the conker hangs. This is the target for the opponent, who has to hit and, to win, destroy yours. Players take it in turns until a conker has been completely destroyed.

How to get a good strike? Put your middle finger through the loop at the end of the string, hold the conker with your other hand, raise it above the finger through the loop, aim and flick forward at high speed. Defence for a damaged cheggie was always tricky, but exposing its weaker side would end in defeat. There was foul play, of course. The worst example was softening up your adversary by accidentally making your fiftyer crack into his knuckles. I can’t remember if there was gambling, but it’s likely bearing in mind what went on in the lunchtime whist and blackjack games.

Really it was about pride, honour and status. Maybe world leaders should have a best of five, as a way to solve disputes.

The leaves on the fully laden horse chestnut tree, 150 yards from my room, are brown and the cheggies are ready. If you climb over the fence after dark, I won’t tell anyone.

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There is a longrunning programme on BBC Radio 4 with this name. They interview noteworthy people, who choose the eight records/tracks/discs they would take on a one way trip to a desert island, and we learn about their experiences. The guest then nominates one disc to keep if the others are washed away. They are allowed a book, in addition to the Bible and Complete Works of Shakespeare, and also a luxury.

It is impossible to choose, and I could write ten more lists. One day I will write more about what is behind each piece, but for now wanted to get this published.

1. The Laughing Policeman, Charles Jolly – reminds me of early childhood, with a mum and dad from London bringing me up in Yorkshire. I remember this black 45 disc, and us laughing along.

Listen here. 124127

2. Songbird, Fleetwood Mac – I grew up next to three kids. ‘Rumours’ was one of the first albums which Pippa, the eldest, bought. This song reminds me of a happy childhood, fortunate to live next to the Dodgshon family. I have listened to it frequently, while I have had the disease.

Listen here. 125128

3. Fool For Your Loving, Whitesnake – my favourite band, by a long way. Rock and Blues, perfect for me. Saw them in 1982 at Queen’s Hall, Leeds. The Friday Rock Show with Tommy Vance, 10-12, was my route to another world.

Listen here. 126129

4. Fisherman’s Blues, The Waterboys – University, Aston in Birmingham, brought me into contact with many great people. The Waterboys were one of the great bands which came to Birmingham. The year in Bamberg, Germany was the highlight, with Summer of 69 the theme tune.

Listen here. 130

5. Buleria, David Bisbal – the sounds of Turkey and Italy stay with me, but the Latin beat of Spain was pulsating. David Bisbal was starting out when we lived there. Travel, Jane’s yoga achievements, the birth of Valentina – it was an exciting time.

Listen here. 127131

6. Whole Lotta Rosie, AC/DC – I drove from work near Nice to the Vélodrome in Marseille to see them. The clapped out Audi 80 did 150km/h along the A8. They were older and so was I! I saw them in Nice with Tim, as well. Fantastic!

Listen here. 128132

7. I Vow To Thee, My Country, Sir Cecil Spring Rice and Gustav Holst – I am not a royalist, but finally I love my country. I also love my God, the country of the second verse. Watch the video of Churchill’s funeral set to this.

Listen here. 133

8. A Land Downunder, Men At Work – Australia, first time in 2001. Country of Jane, birthplace of Sebastian. We’ve been through so much, fantastic mum to our kids, strong values and beliefs, getting me across Dolomites scree, so it goes on. Jane, with my love.

Listen here. 134

Disc of Choice – I think that it has to be Whole Lotta Rosie, because it is a fantastic song and will scare away any unwanted visitors.

Book – I am a fan of statistics, sport and exotic places around the world. I will ask Wisden, the publisher of the definitive cricket results and statistics books, to produce an edition with every test match ever played (a test match is one between two countries).

Luxury – I would like a set of balls, which never go flat.

 

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I like it when people improve a situation some may see as hopeless . Emmel innit ! Hemel Hempstead doesn’t have a good reputation . The council have done a fantastic job to change the town centre . Firstly , they fixed up the pedestrian area with new paving , water features , play areas and generally made it smarter . The nasty buildings remain and many of the shops aren’t great . All four of us visited Hemel last week , and spent time driving the wheelchair and scooting in the newly redesigned water gardens . Quality work , benches to view the gardens , small bridges . Great to see people enjoying it . Give a community something good and see how they respond . In my now very different circumstances , I love just being with my family and having so many laughs . Thanks Dacorum Borough Council .

Another example of hope is my five pound bet on Watford to win the premier league . The odds are 1,000 to 1 . I am looking forward to my £5,000 in May next year . Things got off to a brilliant start with a home draw against Liverpool and away win at Bournemouth . Hope !

Ian visited again from York with version five of the eye gaze shield, designed for outside use. It took two days to make, and uses a foam and plastic laminate material, wood, supports and many nuts and bolts. A particularly cool feature is the counterweight, which is a plastic box containing two fishing leads. It is hard to do it justice to this quality piece of work. Thanks to Ian’s employer for donating materials. Cost incurred was six pounds, and I think Tobii Dynavox users will be prepared to pay £100 per unit. It worked fairly well, and I am waiting for a visit from the eye gaze people to come to install a new mount. Then I can do a proper test. The other great thing about the shade is that Ian brought it from Upper Poppleton to the care home via a stop in Bristol, and by train. Several people on the train, who I don’t know, wished me well. I now have the Deadly Nightshade as well as the switch for outside operation.

I was amazed by the cake Valentina made for Caron’s birthday. All her initiative. Orders welcome.

A few words on our national infrastructure. I would get the rail and local transport back under the state, and I would hire expertise from continental Europe, Japan and China. Dutch railways already run some of our services. Have our decision makers travelled on the integrated transport networks in Germany, the Netherlands, Spain, Switzerland, Scandinavia and Japan? There is no competition on most of our routes, we are very late with high speed and electrification. Even after the next round of electrification, there will be no electric trains from London to Sheffield and Swansea, and between Liverpool, Manchester, Leeds, York and Hull. While we’re at it, can someone start building the third runway at Heathrow in the next few days? I’ll help. I am a pragmatic Green. What is happening with cars – end of the internal combustion engine – will one day be achieved with aviation, and our globalised world will continue.

I am seeing that the carers and nurses who support me can get satisfaction from mastering everything and doing a good job. I see that for some of them, my frequent requests are more of an annoyance. Being a carer or nurse, with twelve hour shifts, takes a certain type of person.

I will try to describe how the overheating feels. It is what I think is called prickly heat. After less than a minute in the ‘heat’ I feel my head erupting in sweat. I immediately need to itch my head, but of course can’t. I’ve worked out that the maximum temperature I can comfortably be in is about 22 or 23 degrees, with the humidity making it more difficult. Wind is very welcome. Having enjoyed living in many climates, I am now happy to be in a cool, maritime climate. Along with the farmers and gardeners, I am one of the few people happy to see Atlantic lows on the synoptic charts. I have decided that the best place for me to live in the UK is the west coast of Scotland, perhaps the Outer Hebridies.

My dad visited, and Jane, Valentina, he and I went to Chipperfield woods. Bumpy along the track, but worth it. My grandfather, Andrew, ran a drapers shop in Finchley, and it was from there that he drove his family to Chipperfield in the 1930s. Not much has changed. We heard Sebastian call out, as he rode over the Common with friends.

On the subject of communication, covered a few weeks ago, I will add three more things. Firstly, some people ask me the same question several times, even though I answered the first time. This is especially annoying when I am responding with head nods. Trust me, I am sure of the first answer and it will not change. Secondly, my social skills, to the extent they ever existed, sometimes disappear. I simply can’t say the words which oil the wheels of human relationships. Don’t be offended. Thirdly, people ask me closed questions, but the answer can’t be a simple yes or no. In these situations, I give an answer on balance, knowing that I have not told the full story. Again, this applies when I am not using the eye gaze computer.

I can’t hold it in any longer. I live opposite a private girls school, which has a huge and beautifully mowed lawn, sweeping down from the buildings to the road. The school’s own students are never seen on this fantastic area. What a waste. Never mind the pupils from the state infant and junior school down the road, whose school has no grass at all. If I understood the trend, safeguarding will be involved for external people. I would love to see the students from the girls school run up and down the perfectly cut lawn this autumn. I hope that they can collect the conkers from the magnificent horse chestnut and get a hundreder.

You may have noticed that the punctuation issues with the eye gaze computer have disappeared. I accidentally changed a setting a few weeks ago. Trying different things, I have changed it back. So, Tobii Dynavox, excuse my assertion that you caused this.

 

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Jane suggested that I write my recollections of living and working with the Italians. In summary, professional, creative, hardworking, rule breaking, fun and sometimes exhausting. I know many Italians, of course, and trust you will be able to have a smile as you read this. I worked in the south of Milan between 1998 and 2000, living with Jane 15km north, in a village called Lesmo. Some recollections in no order.

Long socks – I was sitting at the lunch table during a company meeting in Florence, wearing my black ankle length socks. A colleague pointed out that it wasn’t appropriate for men to display leg flesh, when wearing a suit.

Alfa Romeo 145 – The tow truck guy on the hard shoulder of the Tangenziale Est told me that occasional breakdowns were just part of owning an Alfa. Good to know. Anyway, great car.

Milano-Roma – Linate airport, dark suits, brown shoes and blue ties, Corriere, cappuccino brioche, Alitalia green, cramped Roman taxi, Espresso, meeting, mangiare, Fiumicino, Alitalia, a domani.

Italian lessons – so much more. My brilliant teacher, Valeria, is the Commercial Director’s sister. Small, but beautiful apartment in the city centre. Spumante, elegance, rules to be obeyed and not, really thorough teaching. Twice a week – thank you Luciano!

Coffee rules – cappuccino before 11am, espresso after. How hard is this to understand, you dumbfuck foreigners?

Pizza and pasta rules – pizza with beer, pasta with wine. How hard is this…..?

Rhythm of the working day – arrival by 09.30, tabs and coffee 11.00, lunch 13.00-14.00, tabs and coffee etc, leave between 19.00 and 20.00, smart, streetwise, creative and competitive colleagues.

The suit – understand this – they think we have no idea – Marco, the mid-level Finance guy, told me what he spends on a suit (wow!).

Da Gianni – local trattoria to Via Noto, because of my experiences here, I am a strong believer in the proper lunch break. Fat, white apron, big smile. Antipasto, primo, secondo, dolce, café – parts 1 and 4 might be skipped. Sharing, politics, gossip, football – essential! No, we’re not lazy and pasta is NOT a main course dish!!

Fitness – we were really impressed by this – running and walking in Monza park, hiking in the Alps and foothills, cross country skiing, not many overweight people.

Bella figura – can write a book on this – it’s about being seen to conduct oneself correctly – it’s about pride, ego and reputation. The opposite is brutta figura, which is doing or wearing something inappropriate. It’s alot about how you are seen, and how your behaviour might impact others in your company or group. I might say the wrong thing and the look, because no more was required, was ‘brutta figura, you bloody idiot’.

Il Gigante and our neighbours – perfectly dressed for the supermarket (Il Gigante), matching handbag, bella figura – unlike the English and Australian peasant neighbours.

Whatever it takes – ever been to a mountain refuge in the Italian Alps? Nothing, nothing gets in the way of what’s important – fantastic food and wine, time to enjoy. Total class!