PSP Association
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Rapid change

Mum getting worse by the day last week she could shuffle to the toilet with a frame and now she can't stand , hasn't been to toilet for four days for bowel movement trying everything to help her, speech really hard to understand . It's been since September her eyes were not right and diagnosed in October with psp, I wish I could have my mum back like she was so fit and did so much walking and so independent, mum has carers in four times a day .

9 Replies

Hi blackcushion

I am sorry your mother is changing so quickly. My mum has spells where change is rapid and then she settles and so it goes on. She also has good days and bad. I can only suggest you get as much help as you you can and try and treasure the good times. Like your mum, my mum was also fit, healthy and independent, PSP is very cruel, however she still smiles and has a wicked grin and it's those moments I treasure. This forum and the PSP association are really helpful and supportive, so keep posting. I hope things settle for you both. Chrissie

1 like

You are doing a great job. I suggest you get mum checked for urine infection. They cause immense problems and sudden change. Lactulose is a brilliant stool softener and is liquid . I know what you are going through

It's not easy and a traumatic time for you.

My mum deteriorated rapidly too

The only thing that I can say is that as she went down hill fast she didn't suffer for a very long time. Hugs.xx Dianne


I'm sorry to hear about your mum. I, and the people on here are going through the same thing and it is a very sad thing to watch your loved one going through. All I can say is you are not alone and we know what you're going through. Lindsey


So sorry to hear your troubles. The pace of change with PSP can vary so much that coping with the physical issues may overshadow how frightening it must be for the person with PSP when these awful and rapid changes are taking place. Making time for extra comforting, even if something else has to slip, may help ease the loved ones distress, until the new symptoms settle. I hope you both have all the help you need. Kind regards, Jerry


My mum goes through changes like this too - very sudden decline, then stabalises a bit, then just as we are all adjusting to that, she declines again. It is very hard. Also please do get her checked for a urine infection - Mum had a particularly nasty one and it really did make her very poorly. Xxx


This disease has ups and downs so she may bounce back a bit. It is one of the most frustrating things about PSP. You don't know what is coming next, when a bad turn will happen, how long to live, or anything else. Because it is so different in patients you just don't know what is ahead and need to live one day at a time not worrying about the future. My heart goes out to you and the family.



My husband was walking not to badly although he has freezing of his feet quite badly. He had a urine infection about 2 months ago and it turned into sepsis, he was hospitalised for 8 days, he went downhill very quickly, could not stand, walk, and was very weak and floppy for about 6 weeks, and has not recovered fully from this, and it does not look as if he will.

His bowels are very loose for a few days, then constipation, then lots of mucus, so unpretictable, I use plenty of pads, but have to change his bed every day.

All you can do is take one day at a time, and entry to manage whatever this horrible disease throws at you, I hope you are getting lots of help, as we all need this to cope.

I find that I have to let some things go so that I can spend time and comfort him, it helps for me. The saying goes that god only throws at you what you can handle, but for all of us

I am sure you will agree, it feels like he has thrown massive great rocks, hope you will take comfort from this site, I have.


Thank you all for your messages xx mum on waiting list for a peg is this a good thing I see it as just dragging it all out and discomfort for my mumxx


,h,i.t,isa v,difficult decision to,make

I've decided,that i don't want peg feed as it would only prolong things when I can't do anything 4myself

. Lol Jill



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