PSP Association
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I nearly killed David tonight

I made dinner as I do every night, this evening it was Chillie Con Carne as David is good with curry/Chillie/sweet and sour type meals as long as I feed him. However I made a big is fake. Instead of the normal white rice, I used that brown more solid rice.

Long story short, David had the most awful choking fit I have ever seen him have, really fighting to draw breath. I really thought that this was going to be the end, all I could do was hold his hand and sob. Thank god he got through it. The tub of rice has gone straight in the bin....

I so hate this disease, it's destroying me as slowly as it is him....

24 Replies
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I am sooo sorry! Bruce can no longer eat any type of rice....No fun....I make sticky rice, easier to swallow....lots of water cooked a little longer makes it more one whole unit than individual grains, easier to swallow...lessons learned , Eh? I don't even cook anymore!

AVB

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Oh dear it is frightening when they nearly choke isn't it , George does this nearly every day, I ate something the other day and it went down the wrong way, really frightened me, so just imagine what they feel like, when this happens to them ever day? Sending you a hug Yvonne xxxx

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Isn't that the truth? when B started choking....it was pretty much on everything, though I must admit I did not try to explore the world of pureed food.. I did cut it up smaller and make sure he did not eat too big of bites etc,,,.I was just so scared and he lost so much weight so quickly , we just pegged him...

AVB

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I also learnt the hard way that rice is not a good idea. Even made wet and soggy choked C. He loved sweet and sour so I used to serve it liquidized with creamy smooth mash. Sounds awful but he loved it.

X

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I hope your OK too - that must have been earth shattering.

Warmly

Kevin

PS - I hate it so very much!

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I hate everything about PSP, absolutely everything!

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Here here Patricia!!!!!!! We all agree with that!!!!!! X

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Dear Ratcliffe, you didn't nearly kill David, that's the bloody Psp doing that! Sooooo pleased David worked through it! Someone told me on here rice is no good, I've told my mum but she still gives it to dad! X

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If you cook rice you can liqudise it. What i have done is liquidise it it with plenty of the cooking liquid and if it is to wet use some thickner.. but will admit now use baby rice made with hot water rather then milk... that way he still gets his rice. Janexx

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Ooh another great idea, baby rice! Thx u Jane x

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I have to purée everything for S now. With chilli or curry, I liquidise the rice with the meal. He always mixes it in anyway! Although I have just started ordering food from Wiltshire a Farm foods. They do a puréed range. In just the few days we have had the meals, it has transformed my life. I can spend valuable time, feeding S, instead of using all my energy into, cooking, puréeing it all down separately, worrying if the texture is correct, then clearing up the mess I have made, only to have to throw the food away anyway. It's so much cheaper and the added bonus, he seems to like them and has eaten all the meals so far.

As for your worry about nearly killing him, well PSP sufferers do choke, I would rather S went, choking on something he liked to eat, than his own saliva or medication, as S tried to do a few weeks ago!

Get your Speech Therapist to teach you how to do the "....." Lift. Sorry, can't remember the actual name, but I am sure you know what I mean! Where you stand behind and lift them from around the stomach.

Sending big hug and lots of love

Heady

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Glad I'm not the only one to cheat at the old cooking and mashing lark. I find they are so much easier then doing it myself. And being as everything looks like it should it's not a load of mush and Brian likes them. All i need to donow is sort my own diet out. Janexx

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For the first time, I have had an evening. Took me 18 minutes to cook S's dinner, another 20 feeding him. Then I could do mine. All over by 8.00! Normally wouldn't even finish cooking until then, plus 2 hours to shove the food down him. Tonight was totally stress free.!!! Well to date it is! Still got 45 minutes before Carers come and put him to bed.

These meals are brilliant, thinking of putting some in the freezer for myself, for the days I can't be bothered.

Lots of love

Heady

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I sometimes get some for me. But i tend to pick up some ready meals when i go to marks. I can't be bothered with al the fussing around for just me.

It got to the stage that i was throwing away so much un cooked and uneaten food away that it made me cry it was crazy. So now i don't buy fresh vegetables because they go off before I use them and you can get most veg frozen...... not as nice but not wasting so much. Lazy but hey ho thats me. Janexx

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Think that's the route I will be taking. Although at the moment I am living on salmon and salad on a good day. I'm bound to lose weight, aren't i?????? At moment every pound S loses, seems to be going onto me!!!

Lots of love

Heady

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Heady i have just orderd some pureed dinners from oakhouse they are about a pound a dinner cheaper. Will be getting them on friday so will let you know if they are the same as wiltshire. Janexx

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Thanks!

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Are you on commission, Heady ? !!!

I might give it a go when he reaches that stage.

Jean x

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Thats so frightening, isn't it ? And you're left feeling guilty. The sad truth is we only find out what they can't manage when they choke ! The other option is straight onto pureed. Eating is about the thing Chris really enjoys most. So far no big chokes. He always used to mash his food up if he could get away with it and now I encourage it.

Jean x

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I've been there! I try things that are soft, etc. but now each meal is a challenge. It's so frightening and he wants to eat so badly. Charles has always loved my cooking but now I've had to adjust our menus and they are truthfully not as health but he can't chew.

My thoughts are with you. No rice for Charles, only pasta.

Hope that helps a little.

Cuttercat

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I have given up on healthly eating and the five a day, has long left his diet. It's what I can get down him now is far more important. Full fat milk, extra thick double cream, butter, all the things my fridge hasn't seen in years! S has had a very good diet all these years, I don't think it will do him any harm. To be blunt, what are we trying to keep them healthy for, so PSP can have even more fun, ruining his body????

Lots of love

Heady

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Charles eats ice cream all day long. The only thing that he can eat, knowing he won't choke. Do I cut it off, NO. Let him have that pleasure.

He has a little machine that talks called a GoTalk, one button says ice cream! Let them enjoy.

Thanks, Heady.

Cuttercat

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This disease affects everyone so differently! Five years after diagnosis, and my guy still eats everything, and is noticeably choking much less often and less severely just now than he did a few months ago. We had rice tonight, in fact. He used to have those frightening explosive coughing and choking episodes many times a day, as recently as June. Really, he seems to be going through a mysterious phase of improvement, long may it last. And may it happen for everyone! Love, ec

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Hi Sorry that David had a bad choking event ,Kathy my wife is 3years in psp and when i give her white rice it must be in a sauce, the only meat i give her is marinated pork which is soft and in a brown sauce. Being a carer is a very stressful job and a wife looking after a husband who has psp would be a big challenge ,hope you are getting love and support x Peter

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