There’s no way to dress it up

It’s shit. Yes, that’s how it is to have ALS. Uncomfortable sitting, uncomfortable standing, waking up at night. Every move needs concentration, neck hurts. Rapid change, unbelievable. I know why my children are frustrated. Jane is also exhausted. I watch. You’re still the same you; well yes and no. Worst days are those stuck inside, all hope seems gone, frustration reaches boiling point, ‘other families are normal….why can’t we….?’ Well, I understand. 

Our good friend Tash cooks us a memorable Turkish meal. We laugh till late. Absurd situation as he and Jane try and fix the tip-up chair and I try and make it to the toilet. Sebastian looks on; the onions over-caramelise. ‘Want a drink?’ ‘I need counselling after two hours here…’ We remember all the great times. Lisa has Valentina for the weekend; appreciated so much. Frank and Brad offer Sebastian a cash prize for holing out from thirty feet; he gets a tenner for sinking a ten footer. Thanks to everyone mentioned and not mentioned for your part in helping us. 

More disabled equipment. Bottle to piss into at night. Better than waking everyone up. A Norwegian device to help you to walk and stand longer; worth considering.

Facebook; I need to stop following you; too many memories of what I could do. Five stages of grief; have you reached acceptance? Hell no. 

Twelve, well three, months ago I never imagined I would be in this physical condition. The power of the mind and belief to carry on. I have never been so tested. However you can help my family, whatever you can do, please let me know. 

Here’s a picture of Sebastian’s snowman.


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.

3 thoughts on “There’s no way to dress it up”

  1. Anger ….that’s what I have …listening to your posts and feeling every word …watching my two brothers meet and communicate with white boards and me having to read both boards to know what is going on and then stop to squeeze some weird liquid full of vitamins into feeding tubes ……can it be more cruel…….

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