I keep hearing about stages of psp

[Juliehann]

How do you know.what stage someone is and if it's the final.stage my dad has psp he can.hardly talk and has a food tube in he leans to one side and.is very sleepy most of the day he can no longer walk or stand and sometimes he.don't want to get out of bed he also has spasms in his legs.

[TRICE268]

Hi,

I guess when I say stage to me it's where my uncle is at right now, I guess no one knows when the end is, but for me when I say I feel he is at the final stage it's bcause a month ago he had good energy good movement and was eating a lot more to where as now he is really weak poor movement and not eating or drinking much so to me I see a huge difference in a month. My uncle use love to be sitting up now all he wants is bed. So I guess that's what I mean when I say stage, we all know that no two people are the same.. For me stage is the difference changes I see...

Hope this helps you x

[Glyder]

Hi my dad is in the final stages,he hasent got a feeding tube as he and his doctor decided it wasent a good idea as it can course infections they want him to stay away from hospital. But saying all that where he is having problems eating parts of his food and drink are going on to his lungs and causing chest infections so u can't beat it .i hope everything goes ok and I'm sending my love x debbie

[jimandsharynp]

PSP STAGES – MY THOUGHTS

I've posted this several times on this site but I'll post it again because I think it is worth knowing. PSP is not a one-size-fits-all disease. Each patient is different in how quickly or slowly the disease progresses. Each patient is different in the symptoms they have. Each patient can have the same symptom as another patient but to a lesser or greater degree. As far as "stages" are concerned they just don't matter at all. There are supposedly four "stages". However, your loved one could have a bad fall with brain damage or broken hip and die in any "stage". They could aspirate, get pneumonia and die in any "stage", even "stage 1". They could get a serious UTI that causes hospitalization and death. Like all of us there are no guarantees in this life. THINKING you know the "stage" can be very disappointing if you are thinking "stage 4" and the person lives another three years. As caregiver and loved one you'd be better spending your time on care and love. There are no predictable certainties in PSP! Things might be bad and then the loved one rallies and gets better for months. There are some "level" spots (good or bad) often in PSP for some patients. Bottom line it is an unpredictable disease with an unpredictable length of life. My dear wife and I took one day at a time literally not thinking about what is ahead, what "stage" she was in, what symptom might be next, etc. Worry about "stages" robs your peace for today and doesn't change what comes tomorrow. IMHO Jimbo

[Ld60]

This makes so much sense. I keep saying "we're in late stages" I think this has to be because surely it can't get any worse? then it does! This awful illness tests you on all levels. I feel some days that it's ripping us apart.

[SaraSue]

The member of my family with PSP has been in the "final" stage for almost 2 years, and though he has a feeding tube (for over 18 months) , cannot communicate or move (except small hand movements sometimes) and has eyes in a fixed gaze upwards, his main carer does such a good job of mouth hygiene etc. he has not really had major chest infections and seems quite stable. It is hard to know what quality of life he has as he can't communicate exccept for occasional noises which don't seem to be in response to anything in particular. He has had PSP for 8+ years. As other posters have said, it is hard to know how long anyone will have this disease. Our family member(and/or his next of kin) changed their minds about refusing a feeding tube, and we will never know if he is content that this was the right way forward.