I believe my husband has had PSP since 1996, My question is How long does the disease last he has many other symptoms. now it is distressi

[ronh]

[Hidden]

He is very lucky (or not) it usually lasts about 7-8 years.

My husband was diagnosed in 2006 and is in end stage now.

Keep your pecker up and keep smiling x sandra

[hmfsli]

Hi Ronh,

That's a question we would all like an answer too. The truth is no one can really say how long it lasts as it affects different people in different ways and at different times. If you look at previous questions and posts about the stages of PSP you will see what I mean. When was your husband diagnosed with PSP?

Do keep coming back to this site, you will find loads of people here who understand exactly what you are both going through.

h

[Jane2212]

Hi,

All I can say is that PSP is a strange disease; some symptoms seem more accentuated in some people and not present at all in others. Likewise, there are some people who seem to go downhill fairly fast after diagnosis and those who go on for ages and ages.

In my Mom's case, the first five years or so were very slow. We didn't get a diagnosis until 7 years down the line ! You tend to find that after a stressful incident or trauma they go downhill and then plateau again for a long while. My Mom was a fighter and determined to be the first person to beat PSP, which is I suppose what kept her going so long (12 years). With good care, a fighting spirit and a stimulated mind a very good quality of life can be maintained.

Don't forget the sense of humour

Jane

xxxx

[ronh in reply to Jane2212]

Hello Jane, Ron is similar to your mum, I love him. Thank you for your response, I keep his brain active and we sing together show photos and talk about our good times. His memory of them astounds me and we laugh as much as we can, he says I'm mad which means he is enjoying our time together.

[peterjones in reply to Jane2212]

exactly my sentiments jane i think you have to have a good sense of humour for sure so your mum was going to be the first person to beat psp wel im blowed i thought i was good luck to you mate take care peterjones queensland australia psp sufferer

[Jane2212 in reply to peterjones]

Hiya Peter, good to hear from you ! Yes, my Mom thought she'd be the first to 'recover' from PSP. Well, we're talking about a woman who was always a bit different - liked flamboyant clothes, fought for causes which weren't trendy at the time etc etc, so when she got PSP I said "Bloody typical you go and get a disease that's really unusual, that's just like you !!!!" Even now I think her gravestone is the only one in our cemetery that is covered in little shoe ornaments - she was the UK version of Imelda Marcos so whenever I see a little china shoe (the more unusual the better, need I say more) I buy it for her !!!!

Cheers m'dears

Luv

Jane

xx

[peterjones in reply to Jane2212]

hi jane hows it going ok i hope so mum was the uk version of imelda marcos boy oh boy she must have -had some pairs of shoes then mate those little china ones are very nice are'nt they jane\\\\good on yer mum i think i would have got on well with her how long has she been gone now she sounded as though she had a good sense of humour which i have but my face tells you somethng different im afraid i have that stare that would infuriate some people unfortunately i try to keep a smile on my dial but it does not always work but never mind im still here thats the main thing well mate keep your chin up keep smiling take care peter jones queensland australia psp sufferer

[peterjones in reply to Jane2212]

hi jane hows it going ok i hope so mum was the uk version of imelda marcos boy oh boy she must have -had some pairs of shoes then mate those little china ones are very nice are'nt they jane\\\\good on yer mum i think i would have got on well with her how long has she been gone now she sounded as though she had a good sense of humour which i have but my face tells you somethng different im afraid i have that stare that would infuriate some people unfortunately i try to keep a smile on my dial but it does not always work but never mind im still here thats the main thing well mate keep your chin up keep smiling take care peter jones queensland australia psp sufferer

[jimandsharynp]

I've posted my thoughts on this topic several times so here's the abreivated version. Life is too short to worry about what stage your loved one is in or how long they have to live. They could aspirate, get pnumonia, and pass on at any stage in this disease. They could fall, have a serious injury, and pass on. One day at a time my dear friend. Enjoy them while they are here. Worrying about stages/times just creates pointless stress. IMHO

Jimbo

[groovychick]

This question is asked by all of us at some point-I like your perspective Jimbo. Each day is a blessing, treasure it.

[jillannf6]

just lost my response!!!!1

laters as they say

lol jill

[Jane2212 in reply to jillannf6]

I don't know, Jill. "Laters" ??? Mebbe you've been reading '50 shades' ?

LOL

Jane

xx

[Hidden]

The PSPA has published 'The Pathway of Care for PSP' It can be downloaded from their website. It provides the best information of how PSP starts and develops over time. It will answer all your questions.

[jillannf6 in reply to Hidden]

Hi the pathway ,is a great I innovation of the PSP assoc.

I should like to,re iterate that there is no given time for each stage,to last

Lol,Jill,

And a d