PSP - some trivia from a sufferer - PSP Association

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PSP - some trivia from a sufferer

Diggerandsam profile image
8 Replies

I thought I’d better put a comment on me being a sufferer as I know it would be easy to offend in just using the word trivia in a sentence about PSP.

Anyway, here goes

Why do I dribble all day when my mouth is like the Sahara at night. I have to have water by my bedside all night - and even then I have to ration myself or it would be gone in the first hour or so.

I can’t believe how itchy I used to be - I think it must have been psychosomatic when I had an itch previously as, now I can no longer reach everywhere to scratch, I don’t itch!

For Lent this year I’ve given up treats quite easily which, bearing in mind I used to have some midget gems, chocolate and wine each night, along with some cake or biscuits with almost every cup of coffee, is quite good going. Do you think it could have anything to do with the fact that I can’t move and so am unable to get to them?

Just some of the daft thoughts I have nowadays!

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Diggerandsam profile image
Diggerandsam
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8 Replies
Kelmisty profile image
Kelmisty

If you want the biscuits and cakes, I say have them!

Diggerandsam profile image
Diggerandsam in reply toKelmisty

Get thee behind ne Satan🫠

Kelmisty profile image
Kelmisty in reply toDiggerandsam

😊

JEEA profile image
JEEA

Great that what ever else is happening to your suffering body, Diggerandsam, your sense of humour has not been affected! Trivia is all important as our worlds shrink.

Great that your itching has complied with your body's abilities!

Hope that there is someone who can get your treats to you, even if you can't get to them.

Your body has already given up a lot--sounds like you don't have to give up anything more for Lent!

Richard33 profile image
Richard33

Definitely you need to work out how to reach the treats and glass of wine - Lent is not compulsory for PSP sufferers 😅.

Ruth does not seem to notice when she has a bruise (probably my fault!) or an ulcer etc. It is as if PSP / CDB increases the sufferer's pain threshold?

Richard 😀

Diggerandsam profile image
Diggerandsam in reply toRichard33

Sorry to hear about Ruth - it may be that being in constant pain, though fortunately mine seems to be only discomfort (even in bed, sigh! I used to love lying in bed!) masks particular areas of pain. My best to Ruth

Richard33 profile image
Richard33 in reply toDiggerandsam

Luckily I do not think she has suffered much in the way of pain in her 9 years since diagnosis. Bit of an ache in the neck for which I give her Volterol and paracetamol. But I guess occasional discomfort in bed like you - not being able to move freely......

Richard 😀

Troubleandstrife profile image
Troubleandstrife

I hope someone is nearby to get you a cookie when you so desire. Abstinence is overrated.

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