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PSP Association
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Downward step -

Frank has been on such a level stage with his PSP that we had become a little complacent. but this past week or so sees a difference in him, sleeping so much of the time, very laboured breathing and his hands seem to have found a life of their own, he seems to reach out for something, even in his sleep! I would really like a PSP nurse to come and visit him sometime in the New year and hopefully that can be arranged. It would help me having someone with experience of the PSP to explain which way the illness is going. Maybe just clutching at straws, but what else is there to clutch at.

Wishing the members, families, carers a peaceful time for the Christmas break and only good news for the New Year.


12 Replies

Hi Kay,

Sorry to hear that Frank has taken a turn for the worse. Mum also reaches out for things that only she can see and has been doing so for quite some time. It can be quite worrying when she leans so far forward that she seems to be in danger of falling out of her chair. Mum also had an episode in August where she was sleeping a lot and had trouble eating and drinking. A change in medication has helped on that front. She started taking modafinil and within a couple of weeks was back to feeding herself and holding her drinks. It may be worth having a review of Frank's medication if he is taking any.

I wish you all the best for Christmas.



Hi, I can relate. My wife has been at a certain level for quite some time but I'm starting to notice similar things like sleeping a lot.



hi kay

sorry about frank and his problems

i am back on lien after 10 days iwth no computer

lol Jill


welcome back, I did miss you.

Please enjoy your Christmas :)



My husband exhibited the same behavior the week or two before he gave up his fight. I hate to tell you this, but it doesn't sound very promising. My thoughts are that you should try to communicate as much as he is able at this point. Leave nothing of importance unsaid. My haunting regret is that we left so much unsaid because we got complacent thinking this plateau would last forever. It didn't and now I regret that I didn' push harder to talk to him.


Barbr - thank you for you comments and I will take heed of what you say, I do know now that nothing can be taken for granted with PSP. I am sure your husband will have known your unsaid words, care and devotion speak their own language.thank you for taking time to write.


hi kay1

i agree tell frank that you love him (as u obviouslyu do)and let him go if ejh is readuy

easier said than done


lol JIll


My mum has been doing this on and off for a while now. I didn't realise this was common. She won't tell me what she is trying to reach and sometimes settles for the 3rd or 4th thing I suggest or offer but I feel she doesn't really know what she wants and can sometimes get a little shirty with me when I try to help on this one! Now I realise it is part of it. How can the CHC say this is not complex?

I hope Frank is ok.

Dianne-Peace to you all this Christmas. xxxx


thank you for taking time to reply, every little comment makes me realise how many of us are trying to cope with this bewildering illness just wishing it was a "tick the box" type of answer.

best wishes

Kay x


Hi Kay

Get his gp to check him out just in case there is an infection. Mum would have got real sleepy if she had an infection. I do think that it is prob another stage of this horrible condition but get him checked out just in case.

take care

JA xo


just received phone call from night nurse at care centre, blood test are being taken today and blood in the urine, so there may be a few answers, the UTI just doesn't seem to clear up.


Oh dear Kay! :-( so sorry to hear that. Know EXACTLY how you feel!. We seem to constantly be fighting urine infections with Mum, too!! All the nurses say is "She must drink more!!" Easier said than done!!

We've been waiting months for Mum to have a suprapubic catheter fitted. The op has been cancelled 3 times for one reason or another and is now scheduled for next Mon (31st) and just keeping everything crossed that it actually goes ahead this time!

I hope you and Frank were able to enjoy some time together over Christmas

Sending much love to both of you

Kathy xxx


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