Not to Happy

[Starwarsthe]

well hi everyone I went to see my neurologist and after a ten minute assessment my Dr said that I have pspand not Parkinson’s so if I was diagnosed back in 2017 that 6 years does anyone know how long people who has pap live thank u all for reading

Glen

[easterncedar]

Hi, Glen. I am very sorry about your diagnosis. It’s a shock, no matter how or when it comes. The thing is, there is no firm answer to the question. What they used to say was that the median survival was 7 years after diagnosis. Not average, and not after first symptom. There’s a very wide range. The sort of disability varies a lot, too, and there are named variants based on the differences in symptoms. Like in the rest of life, maybe the best plan is to prepare for the worst while hoping for the best.

Hang on. Stay in touch.

[Starwarsthe in reply to easterncedar]

Thank u for your reply and I will try to stay intouch

[Sharsuk]

Hi GlenMy husband aged 70 was diagnosed as Parkinson's patient in 2019. Last year, he was diagnosed as having PSP-PGF (progressive gait freezing) and PSP-SL (speech language disorder). He keeps saying he has 2 years to live and is spending money impulsively/recklessly. I have tried explaining that it varies based on the type of PSP. That there are people in this forum who are living with PSP for more than 10 years. Anyway, we have decided to take each day as it comes and enjoy our time together.

[timbowPSP]

ITs so variable for each person, no blanket answer, and depends which variant of PSP you have - theres about ten of them. Also your age, etc. I am 82, diag 6 yrs, and want to know that stuff also! PSP = Please Stay Positive. TimbowPSP

[Starwarsthe in reply to timbowPSP]

Thank you ft your reply. I’m 73 year young

[timbowPSP in reply to Starwarsthe]

yep, ur an up and comin youngnster! My Doc has just told me that with PSP, best is to 'make hay while the sun shines' .... that goes for everything in ur life! Enjoy whatever you can. It's good and warm in Malvern, Eng, and near- ot over the pond?

[Diggerandsam]

as others say, there appears to be no definitive timescale. As PSP is not a killer in itself, that’s probably correct. I am a suffere, but I guess my case is different to most in that I suffered a stroke five years ago which left me partially paralysed; my psp was diagnosed just a few months ago, although I can pinpoint almost to the day when symptoms first occurred - just as lockdown finally ended. I’ve deteriorated quite quickly, mobility and speech wise, but still manage to swallow food and drink quite well, so God knows how long I have left; I just hope I don’t deteriorate much more before I go. Given the choice, I’d be gone before now. No, I’m not being morbid - I just agree with Esther Rantzen that I’d rather go with my family remembering my good days than dwelling on my bad.

[OB10]

I was diagnosed 2 or so years ago and in the beginning I was on Dr Google and professor you tube but found them all doom and gloom and the help out there wis mostly for carers or doctors etc. I used to worry about the 2-5yrs that was given but then I decided to turn it around and turned it around and asked myself can’t I do anything about it Yes - we’ll do it No - we’ll stop worrying there plenty of people in cemeteries that would change for one minute. Get out and do and take every day as it comes Take care.

[Richard33 in reply to OB10]

OB10,

Those are fine words. Ruth was diagnosed in 2016 and she is still going and we still have good times!

Richard 🙂