I’ll give Jamie O’ a trampoline for christmas if it’ll help him jump on this bandwagon

Right… I need your help! Anyone who’s been within five feet of us knows what a headache it is getting through the day, and you think you’re just getting somewhere and then somebody says: ‘What’s for dinner?’

I know this can be a mild form of irritation in most households, but in this one there’s very limited preparation time, a lot of restrictions, and there’s always the possibility it could cause a fatality through choking. No pressure then!

Firstly, the muscles that Neil uses to chew are now quite weak and and his swallow action is beginning to be a problem. There have been some mild choking incidents. These can be caused by something as simple as water, but just imagine you’ve had some water ‘go down the wrong way’ and you don’t have the ability to cough, it’s pretty scary.

Louise (still from I AM BREATHING)

I know it’s scary to watch. I have to run to his ventilator and whack up the pressure as quickly as possible, get him sitting forward and guess when he’s trying to cough so that I can push down on his lungs to help force more breath out. I’ve been lucky so far that every time it’s happened there’s been someone else around to help me sit his dead-weight forward. You can do it with one person but you have to support his head with your shoulder and make sure you stay away from his windpipe. I’m not trying to be shocking here, I’m just trying to point out why Neil might be a bit nervous of what he tries to swallow. Choking is one of the biggest fears of an MND sufferer.

So I think it’s best to list the restrictions and throw the challenge out there, I need ideas!

  • Nothing difficult to chew
  • Nothing spicy (including black pepper)
  • No vinegar
  • No pastry
  • Nothing with a shell or skin (eg. peas, beans)
  • Nothing with a crumb (although he seems willing to make an exception for cheesecake)
  • No rice (too much chewing effort, not enough weight gain)
  • No salad (see above)
  • Nothing that can become ‘claggy’ in the throat (eg. chocolate!)
  • Fish is difficult to swallow and he’s nervous of the bones
  • Can only eat bread if it’s fluffy white and laden with butter
  • Nothing stringy (eg. celery, pak choi, mozzarella)

I think it best to add that he’s utterly sick of:

  • Cottage pie
  • Lasagne
  • Moussaka
  • Stew
  • Omelettes

And things that have been a winner recently:

  • Corned beef hash
  • Stovies (with skinned sausages)
  • Spaghetti bolognese (having been cooked, then frozen and re-heated, this seems to make the meat easier to chew)
  • Fruit salad with soft, non-stringy fruit

Although he’s bound to get sick of these too!

Ideas please, don’t worry about recipes unless necessary, I can google them.

Louise x

PS. Oscar will eat anything he can pick up with his hands and smear in his hair.

I dread to think what the staff must have thought of me in the local supermarket. I’ve worked in retail and seen the CCTV screen shots of suspicious people pinned up in the corridors of the staff area. As I said before, this place was my escape, but that was largely due to the clothing section and the coffee shop. When it came to the more important business of food shopping, I walked around in slow motion, staring blankly at the shelves. I would pick something up, look at it, then look around me for inspiration, debating in my mind whether I was holding a food that Oscar would eat and that Neil could eat. Then I would calculate whether it would save me any prep time… then most likely I would put it back. I was convinced my behaviour looked like I was working up the guts to stick something in my pocket.

Food was a headache and one that I made more painful for myself by not wanting to resort to ready meals. It was one of the last realisations that I had about Neil’s illness, no matter what I fed him, it was not going to make him any healthier or keep him alive for longer. I should have given in and let him live on tinned pasta and tomato soup a lot earlier. My head was in a place where I had just gone through feeding up a baby. Oscar had been breastfed till he was one and given mainly homemade food. If I had bought ready made baby food I chose the organic, no added sugar, no added ‘nasties’ type. I was slow to realise that Neil just needed to eat, it didn’t matter what was going in to his body as long as he could swallow it and he could gain weight from it.

I did try ready meals, but they all tasted the same, primarily of salt. I wouldn’t give them to Oscar so they didn’t save me much time as I was making him food separately. Neil’s senses were untouched by motor neurone disease, he had the pleasure of taste without having to worry about weight gain, heart disease or diabetes – none of these things were going to kill him. In his physical state, he should have at least had the pleasure of being able to eat whatever he liked. It was yet another cruelty that most of the food he wanted to eat gave him a fear of choking. He even gave up his beloved chocolate. When I first got together with Neil, I had to learn quickly that he wasn’t joking about the top shelf of the fridge being reserved for beer and chocolate.

Again, our fantastic friends and family came to the rescue and started to fill up our freezer with home cooked meals. – Louise (2013)

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commented 2013-04-03 21:12:57 +0100
The part about the chocolate and beer shelf is Matthew all over. It’s lovely to read about their similarities. Thank you.
@ tweeted this page. 2013-04-03 13:17:58 +0100
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