PSP - some trivia from a sufferer

[Diggerandsam]

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!

[Kelmisty]

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

[Diggerandsam in reply to Kelmisty]

Get thee behind ne Satan🫠

[Kelmisty in reply to Diggerandsam]

😊

[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]

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 in reply to Richard33]

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 in reply to Diggerandsam]

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 😀

[messier in reply to Richard33]

Interestingly my mother insisted she was never in pain until the end. And she didn’t know when she got brushes or cuts or sores and had to be pointed out to her! But she constantly complained about how uncomfortable being in bed was despite all attempts at adjusting head/ feet etc.

[Diggerandsam in reply to messier]

Thanks for this. Coincidentally I had a graze on my arm pointed out to me the other day. I couldn’t think how it might have happened, until this morning; my husband was wheeling me in my chair when I caught myself, in the same spot, on the door - mystery solved, I think. Fortunately this time it didn’t leave a mark. I suffered a stroke six years ago which left me right sided paralysed - it adds to my discomfort, unfortunately, but I really do not have any pain

[Troubleandstrife]

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

[SunriseLegend]

Re drooling - my husband drools a lot and produces a lot of saliva. There is medication available to dry up secretions but in our case the Parkinson's specialist nurse recommended against it for CBD sufferers as it can apparently have unwanted side effects

Re - itching - my husband cannot move at all but itches constantly - nose; back; head; forehead; eyes - I have to scratch his itches all the time

[Diggerandsam in reply to SunriseLegend]

Thanks for the tip about drooling. I have my first appointment with the Parkinson’s nurse next week so will try to mention it then. As for the itching, I know I’m very fortunate - I’ve always had good skin and now my carer goes to war on it if any dry skin appears! Sorry to hear of your husband’s difficulties with itching - good luck to him