Hi I've just joined my dad has just been diagnosed with psp he has just had the feeding tube put in as he can't swallow

[Juliehann]

We don't know much about this diseases is this near the end and if not what can we expect

[Anne19]

Same here. My dad just had an operation for a feeding tube 2 weeks ago. He's on bolus feeding with ensure 210ml every 4hrs.. but he is deteriorating really fast as I think what he's taking isn't enough. He also is at the later stage of this sickness and his doctor said that he might leave us soon.. I'll include your dad in my prayers as well.

-anne cruz, manila, Philippines

[Juliehann in reply to Anne19]

Sorry to hear about your dad. I don't know much about this disease how do u know your dad is near the end. I spoke to my mum yesterday and she said dad just sleeps all the time he don't speak any more and seems in pain x

[Anne19 in reply to Juliehann]

If you have a facebook account join the progressive supranuclear palsy group. There are 4 stages there and my dad's at the 4th stage so there. His doctor also was honest to us. He's in the hospital now because he can't breathe properly due to saliva that went to his lungs and those in his throat.

[Juliehann in reply to Anne19]

Really sorry to hear that yes I'm on Facebook I will look it up thanks dad also had saliva and food go to his lungs that's y he had to have the food tube put into his stomach thank you for yr help x

[jimandsharynp in reply to Anne19]

Anne, Although someone has set "stages" for PSP the disease has a mind of its own. A patient can aspirate, get pneumonia, and die in any stage, even "stage" ONE. Patients can get a very bad UTI and not recover. Patients can have a bad fall with a brain bleed and not recover. Patients can break a hip, arm, etc. from a fall and have to undergo surgery. I've read that anesthesia CAN affect people with dementia and some never get back to their "before surgery" status. There are tons of variables in this disease. I personally didn't buy into the "stages" thing. You aren't in control of the path of the disease so "stages" really aren't relevant. I've never read a posting anywhere by someone who stated they knew exactly what "stage" their loved one was in during the disease. Just when you think the patient is doing poorly they bounce back strongly. You can go crazy trying to figure out the "stages" when better time and thoughts and efforts can be spent on the loved one. Just my thoughts on the topic of "stages". My wife and I ignored talking or thinking about "stages". It just wasn't important to us. As Christians we believe that God is in control regardless of the "stages". Jimbo

[CharlotteH in reply to jimandsharynp]

Thank you - I so agree.....

My husband has PSP - though it's hard that the person I've been living with for so many year has gone from being a strong personality to becoming completely dependent on me, we have decided to accept the situation and we try to get the best out of every day, knowing that even bad days are good - in comparison to what will come.

Especially grateful for days that give us a laugh, a ray of sun, an evening at the opera without a cough (!), or a good meal that he still is able to chew and swallow.

[quickgel]

Hello Juliehann, this is a really difficult question to answer simply because the disease doesn't follow a clear progressive pathway, it varies greatly between individuals. Added to this, the point at which PSP is diagnosed varies greatly. When my wife was diagnosed the general guidance was a 7 to 10 year life expectancy from the time of diagnosis. She died two years later of aspiration pneumonia which PEG feeding is designed to avoid. It was never offered to my wife and I knew nothing about it but there is a lot of information now both on this site and elsewhere (PSPA). Try the search box, top right of this page, it will give you a start.

I'm sorry to learn of your dad's diagnosis and hope you get all the help your family will need. Please stay with this site, there are many people who will have experiences similar to yours and will help with advice and support when ever possible. Kind regards, Jerry.

[jimandsharynp in reply to quickgel]

quickgel, Thanks for the confirmation of what I believe about "stages".

[jimandsharynp]

Julie, You will find that PSP has a mind of its own. There are no set rules patient to patient. What symptoms one patient has another may not. What one patient has a recovery from another may not. Often when you think the patient is near the end they bounce back amazingly. My guess is that the feeding tube will give him a boost and he will bounce back. PSP is NOT a one-size-fits-all disease. Every patient is different to some extent and therefore it is difficult to make any predictions about symptoms OR length of life. Live one day at a time and enjoy your Dad while you can. Jimbo

[Juliehann in reply to jimandsharynp]

Thank you all for your comments it has helped a lot dad has good days and bad days I think we will just take one day at a time x

[peterjones]

HI JULIEI THINK YOU HAVE GIVEN YOURSELF SOME GOOD ADVICE JULIE TAKE IT ONE DAY AT TIME\\\ AND ENJOY EACH OTHERS COMPANY PETERJONES QUEENSLAND AUSTRALIA

PSP SUFFERER

[Juliehann]

Thank you peter hope your ok xx

[jimandsharynp]

PSP is NOT a one-size-fits-all disease. No one can tell you "what to expect". Some patients have symptoms that others never face. Some patients go quickly other linger. Like all of us, even the healthy, there are no certain time-spans we can be sure of. Some PSP patients look near death then recover for more length of life. Its a waste of time to try to figure it all out. Go with the flow, deal with things as they come, love the patient, don't let PSP redefine who you are, do your best. Jimbo