sad

[laila123]

my hsband has stated to sleep a lot everytime i look at him i dont no if he is sad or happy i find myself keep saying to him are you alright does anyone else experiance yhis

[NannaB]

Yes laila, I frequently ask my husband if he is OK. If he is awake he usually gives me thumbs up. Sometimes he has a tear rolling down his face and then I ask him if it is a happy tear or eyes watering or say thumbs down for sad tear. He rarely indicates that he is sad. Sometimes now it is hard to distinguish between thumbs up and down as it waves about half way. I then say touch thumbs if you are happy and he touches his thumb with mine. We then have a little thumb war and end up laughing. I'm sure your husband appreciates any communication you have with him so talk to him normally as much as possible, even if you don't get a response.

Best wishes

Nanna B

[easterncedar in reply to NannaB]

NannaB, I love that story. Simple things to make us laugh may be the most important of all. Thanks for sharing. Easterncedar

[jillannf6 in reply to NannaB]

GREA T THA T STORY NANNA B

MY PARTNER NEV ER LAUGHS WITH ME OR AT ME

LAUGHTER IS THE BEST MEDICINE

LOL JILL

:

[jzygirl]

Not sure if its the facial expression or are we just worry about our partners. In the hospital transport yesterday I was sat faceing Brian and I think I must of asked him half a dozen times "are you alright" every time he said he was ok.

Janex

[nannygoon in reply to jzygirl]

When I as my sister who can't communicate at all with thumbs up or down and has no facial expression, just makes very angry agitated noises, but on occasion she has said no I am not o.k. So sad watching her fade away I am trying so hard to keep up with this awful disease.

[mthteach]

LOL! Laila123,

I do the same thing. My husband sleeps all the time, and he complains that his throat is hurting. Sometimes I feel if he is sleeping, he is not hurting. We volunteer tutoring math to GED students, so his very good math skills are still there. I do see some slowness.

[laila123 in reply to mthteach]

when he coughs he seems like he is choking i feel for him all the time wish people would understand this

[zjillian]

With us that type of thing would come and go. Now I wish my Bob would sleep.

jill

Also check for bladder infection or even a very small fever just to rule out infection. Just a thought.

j.

[jimandsharynp]

Fatigue is one of the less described or talked about symptoms of PSP. Probably because sleeping isn't hard on the patient. My dear wife slept from 9pm to 9am and from 1:30 to 4:00 in the afternoon (nap). I didn't ask "Are you ok?" much and preferred to ask "Do you want anything?". Usually the answer was "no" but occasionally "yes". Late in the disease when her speech was not too good I'd list things and see if she wanted them. Because of the sort of blank expression it's difficult to interpret what is going on with the person who has PSP. Usually my wife would raise both eyebrows if I hit a hot button on items, places, etc. she wanted/liked. Hugs, Jimbo

[nannygoon in reply to jimandsharynp]

Jim I get so much help reading your replies and so sorry about your dear wife. My sister Rose will be 81 on Tuesday think she has had it for about 5 years. She can't talk very much at all and is very ridged with one hand closed in a fist all the time and sleeps most of the time or has eyes closed. Recently she has been rubbing her face and has now got a large friction burn on her cheek (she is in a nursing home) but it is very hard to get her hands away from her face as she is so ridged. Sorry for rambling on but I cried so much yesterday for her hope God takes her away from this pain soon. she is totally chair or bed bound now and on mostly soft food has frequent uti's and just stares at us when we visit not very much response from her at all.

[puyella]

yes laila mate but directly I close my eyes she says to me theres the washing up to do so don't go to sleep will you peter jones queensland Australia psp sufferer \\ whose henpecked\\

[peterjones]

hi laila yiu could be describing my household except that I don't sleep a lot mate my life is organized for me so I don't get time to sleep unless we are not going anywhere that day or afternoon mate but let him sleep if he wants to its very tiring being a psp patient and its a bit hard to laugh as well not because you don't want to mate its our face mate it goes into a blank stare and tightens up a little well mine does ]]]]]] anyone would think that I am dopey but im not I still know what going on around me although I must admit to a bit of forgetful ness like where did I put those keys which I used to do before I got psp mate and we have to keep a dairy now for dates on specialist and drs and visiting and other stuff as well]]]I I don't mind people laughing with me as long as its not at me buy the way I fall over qiuite a bit now as well and my swallowing is not to good and i think my eyes are starting to go on me so it goes on and on but it will not beat me so you see in answer tom your em everybody has problems your not alone mate I can assure you of that well matey that's my lot nfor tonight im off to kip so see yer take care best wishes to your husband who sleeps a lot tell him to stick with it mate don't give in best wishes peter jones queensland Australia psp sufferer please excuse any mistakes I only have an old computer here that's my excuse and im sticking to it