I appreciate everyone has different symptoms with PSP but Peter is now zombie like, he cannot speak and seems to want to sleep all the time.

[huthwaite]

He has no wish to go out or even get up for meals and am scared - what do I do? Is there any point asking the GP to call seeing as they have no idea what is entailed with this condition? I don't know if this is 'normal' or just a stage. Help?!

[jillannf6]

plz contact your psp nurse

she wil eb able to help u

love jill

[Kathy]

It's certainly worth getting the GP to come and rule out any infection (e.g chest or urine) which is a common cause of people with PSP going "off their feet". He may also be depressed, which is another common "side-effect" of PSP. As Jill said, contact your PSP nurse (if you haven't been in touch before you can find details of how to contact the nurse for your area on the psp association website pspeur.org)

Hope things improve soon

Do take care of yourself and let us know how things go

Love Kathy xxxx

[kay1]

All the best advice above! The urine infection has dreadful side effects (from experience) Please get some help, it is out there

[Idris]

My Mum is getting incredibly demotivated, too. She sleeps a lot. It can sometimes be hard to persuade her to get out of bed. Things improved a lot when I finally persuaded her to go on antidepressants - she still sleeps a lot (I think that's part of having PSP), and stays in bed all morning, but I can at least persuade her to get out of bed around lunchtime. I think if I wasn't there (if she was in a home) she probably wouldn't bother.

To me, it sounds more like depression exacerbating what's happening in his brain with the effects of PSP, but I am in no way medically qualified, just commenting based on my own experience of caring for my Mum. If I were you, I'd follow the advice above - speak to your PSP nurse.

Idris.

[judecw]

This sounds typical - based on my mother who died from PSP in November. She lost all speech and became apparently apathetic - we thought of it as her withdrawing into herself - she seemed to be removing herself more and more from us and the outside world. It's very hard - but was certainly part of her decline as she became incapable of anything - even her earlier frustration with her state was gone. She seemed far away from us - showing little response to anything at all. Sorry not to be able to offer more positive comments. Thinking of you.

[ClaireH in reply to judecw]

Hello

I'm sorry about your mother and hope you are coping OK.

I read your message a couple of days ago and I recognised your description about your mother withdrawing into herself. That is exactly how I described my father to a friend when she asked me how he was. He will nod occasionally or sometime squeeze my hand, but otherwise just sleeps or makes no response at all when we talk to him. I know PSP progresses differently for different people, but I wonder if you could tell me how long this lasted and how long was it from this before your mother died. I hope this isn't an insensitive or upsetting question to ask you.

In answer to the main question above - I would reiterate others' comments about contacting the PSP nurse specialist for your area - we have found ours very kind, supportive, knowledgable and helpful.

[judecw in reply to ClaireH]

Hi Claire,

I would say that this lasted for about a year - we lost our mother last November and certainly she became further and further away from us for the final few months of her life- from about August onwards she seemed to be somewhere else, if you know what I mean.. She stopped squeezing my hand just about a couple of months or so before she died and was sleeping much of the time - from about late summer onwards. We kept thinking we were going to lose her, but she clung on - then, about 10 days before she died, she would not eat - just kept her mouth closed and in the last 5 days would not even drink. So although it appeared to us there was little going on in her mind, she did seem to be deciding quite when she was ready to go---at least that's how it seemed to us and she finally slipped away when my sister and I were with her one evening. By that last two weeks, it was pretty clear the end was near as she could not even close her eyes and there was no communication with anyone at all. It's a very hard time - I am afraid I can't pretend otherwise.

[ClaireH in reply to judecw]

That's very sad, but also helpful for me to understand.

Thank you Jude for your openess and honesty

[LesleyB]

Hi

My experience with dad was very similar to Jude above. It is all part of the PSP but as some of the others have said my dad was affected by Urine and Chest infections which made him worse, so it would probably still be worthwhile contacting your GP and speaking to the PSP Nurse

Take care of yourself

Lesley x

[Fiona_McL]

Hi Huthwaite

do talk to the PSP nurse, and then the GP. It may be an infection, or a progression of symptoms. My mum seemed quite withdrawn at times, but knew what was going on around her and didn't want to miss out on any news. She was quite happy to just sit/ lie there and hold our hands. PSP is exhausting.

Take care

Fiona

[dllera]

Hi Huthwaite - i have posted a couple of links for you to take a look at and might be able to help -I've always printed these and took them on appointments.

pspinformation.com/disease/...

pspinformation.com/disease/...

Also -like it was said above -it could be an infection - -my dad did not show fevers with his UTI's -mostly confusion and fatigue.

Good luck,

Danielle

[Jordannolastname]

My Grandma Had PSP and she also became very zombie like, she couldnt talk or feed herself anymore, she refused food, and just wanted to sleep too. We finely had to have a RN come in to help us take care of her.

[huthwaite]

Did you have to pay for this service?

[Vitruvian]

All very sensible comments. GP will probably have no knowledge of PSP, but can check for other intercurrent illnesses such as infections. If this is not the case then you need specialist advice, it may well be disease progression, but many patients suffer from depression for example or other problems which can make things appear worse. My very best wishes to you both.

[huthwaite]

Thank you all for your responses. Sadly Peter died on 28th February.

[lorrainne]

So sorry for your loss huthwaite, my mum passed on sept 29 2011 from this awful illness. Reading these posts brought it all back to me.

My thoughts and love go out to you and your family xxx

[jillannf6]

Hi Peter is prob ok,inside

I think his physical problems outlet what's going on witn