Music to move the stars

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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.

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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.

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.

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