Intro

[Jewel23]

My father has PSP. He's 85 yrs of age. He was officially diagnosed with PSP later part of 2020, but i suspect that he started showing some visible symptoms since 2017.

[Kelmisty]

Hi,

Welcome to the group no one wants to be at.

[timbowPSP]

Hi there Jewel, and welcome! I was diagnosed PSP 5 yrs ago aged 76, and still chugging along! Seems usually the older you are getting PSP is a 'good' thing as it usually develops slower. I have written my experiences with some useful hints/advice as 3 - A4 pages. Will send it to if you like, but best if you give me ur email, so I don't need to splatter it all over thees pages. Best wishes to ur Dad ..... are you his carer? Cheers TimbowPSP

[slimweiss in reply to timbowPSP]

Hi. I would be interested in what ideas you have too. My husband's recent brain MRI shows PSP but his Neuro said they don't always agree with the radiologist report. However based on how fast he has declined since his diagnosis of Parkinson's in 2019 and how he doesn't respond to the Parkinson's meds, I personally agree with the results. He is pretty mobile using no assistance other than my arm on occasion and his appetite is great. He has incontinence mostly at night, takes Sinemet every 3 hours!!!, has hallucinations, when meds are wearing off, he has a hard time talking, drools a lot, and is sometimes a little obstinate. thank you for your input.

Jeannette

[Jewel23 in reply to slimweiss]

Hi Jeannette! I have heard several people or should I say family members that they're loved one usually is misdiagnosed. They will diagnose them with Parkinson, etc. But as time goes and other symptoms presents and/ or meds don't work that's when the neurologist realizes that it could be something else. By then a long time has already passed. But it seems to me that every patient has slightly different symptoms and or the symptoms are out of order. In other words, 2nd stage can show symptoms of 3rd stage or viceversa. Definitely it's a day by day basis. You never know what to expect. My father has mobility issues. Is like he freezes and can't move even when two people are assisting him. Now he is not eating much and is hard to give him his meds. Even if they get mixed with something sweet, he can tell the difference and doesn't want to cooperate. He's got both bladder and bowel incontinence. That's what makes me think that he's in the advanced stage. Not sure if this gives you any insight.

[Jewel23 in reply to timbowPSP]

Hi Timbow, thank you for your reply. My father was officially diagnosed in latter part of 2020. After having an MRI. His PCP kept saying that he was getting forgetful due to his age. But now going back in time, i think he showed symptoms that we could notice in 2017. I would really appreciate the info that you would like to share. My email [e-mail]. Thanks!

[timbowPSP]

Think I just sent you a reply .... arrived? You hAVE TO SCROLL TO VERY END. Best Tim x