PSP Association
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No P

Oh, bother,

Liz has all but stopped peeing. She went normally at 1330 yesterday and drank about 2.5 litres before bed. No peeing at bedtime or in the night, nor this morning.

At 1230 today she passed about 300ml of dark urine. It did not have a particularly strong odour and then nothing and the has had a further 2.6 litres of fluids today.

We have spoken to the GP and will do kidney function blood tests tomorrow. He said do't start worrying just yet.

Liz does not need a catheter yet.

Has anyone seen this sort of thing?

Thanks

Kevin

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Mum gets uti quite a lot. In hospital if they don't pass urine for 24 hours a catheter is put in if bladder scan shows bladder is not emptying. Liz has drunk an awful lot of liquid (wish Mum would drink that much) with little output. Mums urine never has a strong odour when she has a uti, I can tell in a change in her behaviour and physical ability. Hers go cloudy more than dark, everyone is different though.

How does Liz appear in herself? Any raised temperature or feeling dodgy?

Is liz still continent as such or has she got to having to wear pads etc?

Do you have a contact at hospice you can contact for advice or District Nurse?

X

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i agree

;ol jill

xxxxx

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Thanks Spiral Sparkle - Your questions are spot on the money.

Good news first - We've pumped the fluids into her today and magic 600ml of almost normally coloured urine at 1630! Hurah.

I never knew that urine might not have a smell with a UTI.

Thank you for that, logged for the future.

Liz is stubbornly normal, or is that normal and still stubborn - not sure.

Temperature normal...

Liz wears a small pads for drips during the day.

When we got the 1630 urine I tested it with a proper urine test dip stick.

Everything negative. So glad I bought those.

Oh, false alarm, I am treating it as a training run for what is to come. So your post and the others are really helpful.

Thanks again

Kevin

x

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Great news more has been passed and tested negative.

Tena do a kit called u test that can be put into a pad to test for infections like the dip sticks. If you need them in future as we had trouble getting a sample from mum as she mainly goes in pad now and not commode. District nurse bought the kit round.

Still not a great amount passed on amount drunk so I'd still keep an eye on output.

I'm lucky if I get Mum to drink a litre a day and panic if only one toilet trip doesn't have much output as worry about uti all the time, along with everything else!

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Thanks SpiralS.

I guess you are right. Its not much is it?

We go another 500ml this evening.

I'll check those Tenna things out... Sounds just what we will need.

I am coming up to speed on this... I guess its just another learning curve eh?

You help has been great.

Thanks

:)

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That's good then got multiple output today.

UTI has been one of Mums constant niggles over last 18 months..wee, poo, temperature,. Pain and sleep are our main topic multiple times a day lol

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Sorry if I say your post made me chuckle... Life does come down to this and, of course, inputs!

Now what about the meaning of life question that I struggled with from the age of 12 to whatever?

lol

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Oh yeah don't forget inputs....creativity of enticing to eat and drink when one changes mind daily on what they like or fancy

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Kevin, 5 litres is a lot and only passed 300mls. Is Liz in discomfort in her abdomen, does she feel like she wants to pass urine. My advice would be that if Liz starts with tummy pains she may be in retention and they may need to pass a catheter just to empty her bladder

Hopefully it will resolve itself x

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Hi Richmond

Thank you

As you see above it resolved itself. Gosh was that panicky.

600ml this 1630.

This urine thing is a new step on the path for me.

It is so good to have someone here with your professional background :)

I'm going to keep an eye on it.

Thanks

x

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Thinking - Yes 5 litres is a lot... and we have only had 1.1 litre back!

I've called the GP and he has told me to keep an eye on it and he will telephone me further.

Thanks richmond1 :)

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Your more than welcome x

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No sorry Kevin thinking of you both

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Thanks Tillyhugs - All resolved - I think.

Liz goes to the loo 4-5 times every 24 hours... So this rattled me.

Thanks for being there.

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Sorry K, I don't know

Hugs to you both x

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If you look above its all resolved now - I think.

I guess I panicked a bit... Ugh!

Thanks for being there though

x

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It's fine to panic

I'm always here for you K ❤ x

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And you always are

Thanks

Kevin

(please imagine some lovely icons here... :) )

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Ha ha

Here's some just for you!

👿💩🐸🐷🐞 very random but I know you love em 😆 X

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LOL

Thank you!

This is what I empty out from the comode.

I never mind the smell - Its the way it looks at me

💩

You've made my day

xx

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Bless you x

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We name Mums output!

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I hardly dare say this but now your situation is resolved/resolving? I'd like to say I wish Jon pee'd less. He's taken to doing it all over the bathroom floor or in the wash basin. And still laughing about it.

This evening when he called me to assist him he said our son (nearly 40 now) followed me upstairs aged about 5. Said he often sees him. Felt really spooky asking him if he was beside me now! Answer was No now that I'd told him the time which brought him back to reality it seems. Strange times.

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That is a bit spooky. The brain does funny things later on with PSP doesn't it.

And please don't talk to me about the P-word today!

I was up three times in the night and every two hours its commode time today.

You were right - five litres was quite a bit and it had to come out eventually.

(Happy)

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You're not alone. Four times last night, five the night before. Jon can't lift his legs back into bed and mostly cant stand from sitting to get out of bed. I help him out, go back to bed while he takes 10 minutes to pee (with more or less accuracy) and help him back in.

But at least he's lovely about it. Always apologetic.

He's started day care one day a week at a lovely day hospice so times are changing. Last time I was there it was a riot. A Buddhist nun, a regular visitor, was running a quiz. Men v women and it got completely out of hand. The men were losing so heavily that the nun tried to feed them the answers, so the women were vocalising their protests loudly. But nuns don't cheat do they? So they must have been mistaken. Every so often when it got too riotous, the nurse keeping the scores would ring the bell and call for order. I couldn't stop laughing.

So lots of laughter still (except when faced by the poo/pee clear-up)

Hope Liz enjoys hearing this. I loved hearing about her visitors.

Rx

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Great news that it has been resolved. Hope Liz is feeling ok now and you both get a restful night tonight. Nanny857xx

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I'm so glad Liz's problem appears to be resolving Kevin. I think I would have worried too! Hope you have a better day today :)

Mx

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Thanks Martina12

It was up to the commode throughout the night!

I have never been happier to have had a broken night :)

XX

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Hi

I think you are right Kevin, this illness does something to how they produce urine, Rog has the most odd diuresis at times, going from maple syrup to maidens water! He has had a catheter in for a while, I won't let the DNs near him to change it after the last fiasco, touch wood it has made things managable. Rog has a small beer each night in a sippy cup! That seems to work a treat.

Have a good day I think we all all to see some rain.

Julie x

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Kevin glad it is all sorted out xxxx

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Hi Julie

That's really helpful Thanks.

Next hospice nurse visit we will be discussing catheters I guess. Get ahead of the game.

Liz will hate this! Ugh! I don't blame her. PSP takes everything away bit by bit.

I've been increasing my beer intake steadily with little effect though...

Maybe it might work better if I give Liz some?

Kevin

xx

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My husband went through this about 3 months ago, he was drinking a good amount of fluids but woul not pee for 18 hours .he did get back to some what normal , maybe the other way more so (unable to hold his pee).as long as I keep him on a schedule he dose pretty good .I did ask the doc how long do I wait before seeing a doctor if this happens again, he said 4 hours.. Like that's going to happen, it seems like thing happen on the weekend or in the middle of the night in our house.Do hope it works it's self out , it has to be un comfortable .

Dee in BC

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Hi Kevin

Just wondered how things are going for you this week.

Hope Liz is a bit more settled

Tillyhugsx

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Hi Tilly Hugs

The Doctor at the Neurology hospital said it was nothing to worry about, "Probably just one of those things." He said that if it had gone on any longer we should be looking at Cathetarisation. Our GP said if there is no discomfort and there wasn't, then 4-5 five days would be worrying. Hospice nurse says 36 hours max. Shoot one tired GP?

All is back to normal now though.

Thanks for asking.

Kevin

XX

PS - Been frying CHC fish this week... stressful!

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