I know nothing!: I have been fighting PSP... - PSP Association

PSP Association

9,664 members11,572 posts

I know nothing!

Heady profile image
32 Replies

I have been fighting PSP for a long time now. Refusing to bow, when things have got hard, until matters have forced me.

As some of you know, last weekend I was "forced" yet again, to kneel before, this horrible master and start puréeing all S's food and thicken all drinks.

The result.... S is eating better than he has done for a good couple of years and so much quicker. Is now enjoying his morning coffee, I can't even began to remember the last time he drank it, although I dutifully make him one, every morning. Needless to say, his bowels are a lot better, although that might be the dynamite the DN's have given him. Is actually saying he is has enjoyed a meal, the sounds of approval, while eating, is great!

The excitement this morning in the supermarket, when I asked him what desserts he fancied, now I am actively looking at the calories chart to get the highest, instead of the lowest.

Oh the wasted hours, trying to get him to eat, the stress and the tears. I thought I was saving him from the final kick in the teeth, forced to eat baby food, but he is thriving on it!!!

So from being really upset and dreading the fuss of puréeing all meals, it's suddenly a pleasure to prepare his meals again, worth the extra time it takes. The dishwasher working a bit harder, my stomach and eyes aren't happy bunnies, with all these goodies in the house, hey ho, small price to pay. May save us having to make the peg decision just yet!!!

Don't worry I am ducking, no doubt something else is about to bite me!

Lots of love

Heady

Written by
Heady profile image
Heady
To view profiles and participate in discussions please or .
32 Replies
NannaB profile image
NannaB

I'm so pleased Heady. I thought you'd soon get in the swing of preparing soft food. S must feel so much better not struggling to swallow. Stand up straight. It may be a long time before you are hit with something else and you don't want a hunched back do you.

Here's to a long time before the next dive.

X

Heady profile image
Heady in reply toNannaB

I'll give it two days, if I am lucky!!!

Lots of love

Heady

Auddonz profile image
Auddonz in reply toHeady

Think positive, try at least Heady.

Doglinton profile image
Doglinton

Great. Hope you are following nannaB's example and making the plate look like an artist's palette !

I'm halfway with Chris - lots of soft food but no need to puree yet. However I feel differently about that after your experience. Might puree some vegetables.

love, Jean x

Heady profile image
Heady in reply toDoglinton

Don't think much of my artist!!!

Lots of love

Heady

NannaB profile image
NannaB in reply toHeady

Abstract or modern art????🎨

X

Heady profile image
Heady in reply toNannaB

More the guy under the bridge!!!

Lots of love

Heady

Kevin_1 profile image
Kevin_1

Go for it Heady!

Yvonneandgeorge profile image
Yvonneandgeorge

Heady so good that S likes the purred food, I think we will be there soon, George has still got a good appetite, but coughing much more, can be frightening, well done Yvonne xxxxx

Nanny857 profile image
Nanny857

Heady, great news, so happy you are in a good place, long may it continue. How's the new car working out? Lots of love, Nanny857 xx

Heady profile image
Heady in reply toNanny857

Getting use to it! Very fiddly, making sure everything is attached. But S does like being in charge of the electric winch. Certainly no worries about him falling, when getting into the car now. Thought I would be able to go out more, but that's not happening, perhaps if the weather picked up, I might feel more inclined!!!

Lots of love

Heady

Nanny857 profile image
Nanny857

Don't agree with your heading, Heady, you are a mind of information as you've helped so many on this site with your knowledge and experience, the down side is unfortunately it is all due to this cruel disease. xx

jzygirl profile image
jzygirl

Heady don't forget if you're going for calaries and he likes angel delight measure out your milk (whole milk) you then can add milk powder and complan (all extra calaries). You can also use angel delight to thicken milk a pint of milk to one sachet makes a thick milkshake. I also get tinned rice pudding and blend that with the complan (just add the complan powder in blender)

Our dietician got us a prescription for "pro cal shot" and that works out at 100 cals for a 30ml shot and you can put that in drinks and food. I put some on his weetabix in the morning and then another shot goes on his rice pudding or his angel delight and the last one goes in a complane shake.

Hope this helps. Janexx

Heady profile image
Heady in reply tojzygirl

I think at the moment he is well over what he should be having. Haven't checked his weight in the last couple of weeks, but looking at him, the weight loss has stopped! I will keep in mind what you have said.

How's Brian tonight?

Lots of love

Heady

abirke profile image
abirke

Well yahoo! Nothing but for a blender and some thickener is solving problems at your house....and many things just need to be mashed! Are you trying any smoothies out? they are sweet and nutritious at the same time! I am so glad to hear S is feeling better! I am sure he is happily surprised too! And like Nannab said, make sure you are standing straight up ! Don't worry about tomorrows problems today .......rejoice and have a a high calorie dessert!

AVB

Heady profile image
Heady in reply toabirke

I wish I could!!! Jeans are far too tight!!!

Lots of love

Heady

abirke profile image
abirke in reply toHeady

I'm eating Famous Amos chocolate chip cookies as we speak....again!

:)

easterncedar profile image
easterncedar

Oh you do bounce, Heady!

Heady profile image
Heady in reply toeasterncedar

Not yet, but all these goodies in the house..... It's very tempting!!!

Lots of love

Heady

Gracie_Girl profile image
Gracie_Girl

Continued good fortune, Heady. It is unusual for good things to happen with this dreaded disease. You truly are an inspiration for us all.

Yvonneandgeorge profile image
Yvonneandgeorge

Here here Heady 👏🏾👏🏾👏🏾👏🏾👏🏾👏🏾👏🏾👏🏾👏🏾👏🏾

Amilazy profile image
Amilazy

Great news Heady, hope it lasts and he puts on safe weight and gets the nutrician and liquids he needs. Enjoy the whole food while you can you need the treats, dieting can start later (much later).

Best wishes Tim

Katiebow profile image
Katiebow

Isn't it silly Heady, how we try to hold back the tide when in fact it makes life alot easier and more pleasant. It was like that with the walker and wheelchair for Ben, he was just getting used to using them when he went and broke his hip. He has been choking quite a lot in hospital and they have said thickened drinks and yogurt to help get the pills down. I think it is because he can't sit up really straight to tuck in his chin when eating to help keep the airways closed.( as advised by the speech and language therapist) glad you have got a bit of a break before the next trick up psp's sleeve is played on you both. Love and hugs. Kate xxx

Satt2015 profile image
Satt2015

You go heady!!

You're obviously doing a great job (I'm not surprised)

And yes it's weird buying high calorific foods, I dare not touch them myself but know they are good for dad, although whether or not he agrees to tuck in is another matter!!

Keep up the good work!! X

Heady profile image
Heady in reply toSatt2015

I don't know about that. Pure fluke, in my eye!!!!

Lots of love

Heady

Robbo1 profile image
Robbo1

So glad things are looking up. Like you, I know nothing. After saying that B will not eat creamy soups, he ordered leek and potatoe soup today , with granary bread, when we went out with our daughter. ! ! ! X

Heady profile image
Heady in reply toRobbo1

At least things are going the right way for once.! Did B enjoy his soup?

Lots of love

Heady

Robbo1 profile image
Robbo1 in reply toHeady

I don't know if he enjoyed it or ate it to prove me wrong! X

Heady profile image
Heady in reply toRobbo1

I think the word "HE" in your sentence, says it all!!!!

Lots of love

Heady

Auddonz profile image
Auddonz

Happy he and you are doing better with the pureed food. My hubby is still eating but more falls. His memory is horrible, which at this point drives me crazy. It's like living with a large 3 year old. BTW, he has lost a lot of weight. Anyone else dealing with that?

Love bac,

Audrey (aka Audrey)

Heady profile image
Heady in reply toAuddonz

S is now in a wheelchair and can barely communicate, so I am afraid I haven't a clue!

Lots of love

Heady

Lieve profile image
Lieve

Someone on here once said that red wine with thickener tastes just the same. We've not tried it yet, it's weird in coffee, but as with anything, if it makes life easier for our loved ones, then we try it! My mum tends to blend everything together and some things come out quite grey but I've been assured it tastes ok :-) And I really don't want to go on about this great tiramisu recipe, but with mascarpone, cream, cookies, chocolate AND amaretto (no raw eggs, I thought the risk was too big)... well, it's just perfect for lots of calories and it doesn't need blending! My dad had lost about 20lbs in the first year I came back to live with him, it was scary, but it's stabilised since then, I think the food mashing, blending and pureeing made a big difference.

Good luck staying away from the treats... ;-)

Not what you're looking for?

You may also like...

Feeling Sad

As I've mentioned before my husband was in the hospital back in October for aspirated pneumonia and...
roadrace profile image

Poor vision means messy eating! MY TIP: Hand held meals work for my guy!

My guy is still walking and eating independently, but I have noticed a fast decline in his vision...
psplife profile image

What do I do????

S is being a pain!!.,. Just for a change. Eating again is rulings our lives.  We lurch from one...
Heady profile image

Psp help

Hi all, My dad is 79 and was diagnosed with PSP in early 2013. He has deteriorated significantly...
Mp100 profile image

CBD - How far we have come in 6 weeks!

Each day has been a blurr, especially more recently! My man was hospitalized on May 2,walking with...
honjen43 profile image

Moderation team

HelenPSPA profile image
HelenPSPAAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.