My dad has psp for six years. He sleeps a lot , can barely walk., or talk. He takes mostly purée foods. I am wondering is the last stages.

[emmaapanah]

[MoragR]

My dad is just the same. It's just not possible to know how long this stage will last until they're not eating at all, I think. My heart goes out to you, it is very hard.

[piggyinthemiddle]

Hello, Sounds similar to my Dad who has had CBD for 5 years. He isn't quite on the pureed food yet but can't communicate or walk at all. He is sleepy alot of the time (which is a blessing I think). As Morag says it is very hard.... take good care.......

[cawbird59]

We aren't exactly sure when mom's PSP began.... she was properly diagnosed in 2011 but that's after 4 other Neurologists failed. We think that she's had this for several years, maybe as many as 7 or 8. She is at the stage of not being able to eat well anymore, her fine motor skills are no longer... ie: fork to mouth, uses her fingers alot. The home care facility that she resides at are going to start pureeing her meats. My mom hasn't been able to walk for 18 months and can barely say one word. It's heartwrenching to say the least. Brutal disease, my heart goes out to anyone faced with this. I understand your concern, we also would like to know where mom is in her disease... final stages is my guess.

[jimandsharynp]

No real way of telling. Just take a day at a time and make it the best you can.

Jimbo

[jaylew1]

HI

I have got PSP, and it frightens me too think that my son will have to go through what you all are going through with your loved ones, my heart breaks for you and i applaud your commitment ,,,,,,,,,,

im not sure what stage i am at, ' i dont walk very well, if at all,( and when i do i fall),, my speech is really bad,so i find that i dont even try anymore...i occasionally choke, but on the whole my eating isnt too bad, apart from the amount that i eat. i just dont stop eating from getting up to going to bed............... My coordination. is very bad as well..........

A new thing that has happened over the last few months ago, it started with my left eye closing for no reason and i found it easier not to fight it, however my right eye has started to close now, so i have to fight it,,but its a lot easier no to...lol

I think the worst thing about this dreadful illness is the fact that we have got to rely on other folk all the time.........the doesnt mean that i am un grateful, because im not, quite the opposite,i am so very grateful for everything that my carers do for my however words cant express how i feel about my son and all him and his wonderful a

do for me........ I am lucky to have what i have got,,and i thank God every day........

im sorry for going on about me.......but i would just like to reiterate what i have said about the carers on this site

my heart goes out to you; all...and thank you for sharing with us,,,,,,,,,,,,,,,,Jay xx

[Marykayrenaud in reply to jaylew1]

You are very brave. Just keep fighting,

[PUTLAND in reply to jaylew1]

Hi have you asked about botox for your eyes, it can be great help. Talk Care

[Hidden]

The end stage is often governed by the infections that come with it . My mum was propelled into end stage by a silent, undetected UTI. It was 8 weeks after that that she lost the battle. She was 77 so obviously not as strong any more.. She had PSP for 6 years that we could pinpoint. We had mum on prophylactic antibiotics by the end stage and the general feeling was to let these do the job.

End stage is also governed by their nutrition and of course swallowing. Mum's muscles just grew stiff all over until she could no longer swallow. She was able to let me know that she wasn't even hungry in the several weeks beforehand so she was really eating to please everyone else and the only thing she would ask for by then was ice cream.I hope your Dad is at peace soon and don't suffer too long.

[stitchandknit]

Hi, my mother in law, has been fed by peg for the past 8 months, and has nil by mouth for the past 2 months. Thankfully, up until last week, she has been well in herself. However, she is now suffering with constipation, and is not able to go for 6 days at a time, I don't know if this a part of the condition or not, but it is just another nasty thing she has to deal with. But thank God for the wonderful carers that look after and love her at the care home she is living in. What ever and whenever the last stage comes, lets hope it is painless, and peaceful.xx

[Hidden in reply to stitchandknit]

Hi there.

Constipation is one of the symptoms, my husband has lactulose every day to help him x

[stitchandknit]

Hi sanandgeoff

I thought it might be, just another muscle to give in, it is probably the only thing my mother in law had left of her dignity.

Thank you. x

[Marykayrenaud]

Prune juice helps