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.