Time scale: My Wife, in her mid 70's was... - PSP Association

PSP Association

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PSPA
12 Replies

My Wife, in her mid 70's was diagnosed with Parkinsons some 4 years ago but earlier this month was re diagnosed with PSP so we are on another learning curve.

Currently reading literature and Google mad

My main question at this time is is there any average timescale for surviving and if so how long is it?

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12 Replies

Welcome to the site. We were told 7 to 10 years from onset. Larry physical therapy told him she knew someone who diagnosed 12 years ago and going strong. The answer is who knows. Depends I suppose on your wife general health to start.

doglington profile image
doglington

Welcome.

Every one asks that question and the truth is that it varies. However our consultant said usually about 7/8 years from first symptoms. My husband died 4 years after diagnosis. Looking back there were early symptoms about 4 years previously.

How is your wife at present ?

My only advice would be to make the most of now and keep mobile - all pretty obvious really.

love from Jean x

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PSPA in reply to doglington

Thank you, appreciated.

Best wishes,

Ken

doglington profile image
doglington in reply to PSPA

Do feel free to tell us more or ask anything. Everyone is very supportive on here and we all know how stunned and over-whelmed you feel at first. love from Jean x

Zeberdee profile image
Zeberdee

My hubby was diagnosed with PSP in 2013 he passed away in 2017 so sufffered this illness for four years but before diagnoses he was in good health. From reading the many posts on this site there is no timeline so I would say enjoy as much time together as you possibly can. Sad you have to be here but welcome. Jxx

Karynleitner profile image
Karynleitner

Welcome. I too wanted that information. My husband has had this disease for almost 3 years, yet only definitively diagnosed last year. I still look at each persons story and try to predict what might come next for us, etc.

My husbands disease is moving quickly. We recently took him to Mayo Clinic , USA. They are reputable and told us that most patients they see with PSP that are slow progressing will continue that path and that Dan was likely to continue to have fast progression. That is certainly not always true. Some patients on this sight have reported times when the disease seemed stable or progressed at bit and then there was some recovery.

Life exspectancy is difficult to predict because the disease itself is usually not what cAuses the loss of the battle. It can be infection, the inability to swallow, or the refusal of food.

There are many experiences shared on this sight. I hope it brings you the information you need. I think you’ll find it very helpful. Again..Welcome👍🏽

PSPA profile image
PSPA in reply to Karynleitner

Thank you so much for your detailed response which, like others, is useful.

With best wishes, ken

Marie_14 profile image
Marie_14 in reply to Karynleitner

Karyn don't tear yourself apart thinking how long. Just try to enjoy each day you are together. Make happy memories if you can.

Everyone is different as you know but there does appear to be a fast progression and a slow one. My husband had the fast one too. All we can do is cherish every day.

Love and hugs to you both.

Marie x

Escada29 profile image
Escada29

My partner told me his symptoms started in 2007 and that is 12 years ago now. For us it is a long hard road he is winding down now slowly but surely.

Artteach10 profile image
Artteach10

My husband was diagnosed in January with PSP. Parkinson’s a year before. I too just found this sight and am learning so much from all the wonderful caring people I have found here. Take care and I wish none of us were having to be here but hopefully we can support each other. Best wishes, Nancy and Gene

margh2468 profile image
margh2468

Hi there and welcome. Like you I googled everything trying to work out a time frame. Most said 5 - 7 years, Leon is, in my opinion into his 8th year but could certainly be longer. He has days where I think that is it, then he rallies again. He is P.E.G fed, if he hadn't chosen to have that he definately would not have been here now. That was July 4th last year, he had complications after and ended up in hospital where he got pneumonia, but rallied after 3 weeks. He has had 3 down days just now, but today when I went he was up in his chair again, and asked me to shower him. This site is so supportive. I am so glad I found it as there is nothing like it in Australia where I am.

Hugs Marg H

PSPA profile image
PSPA

Thank you for your response and info. also to evryone else that i have not had the time to answer so

This will be my last reply because I have had so many and I am EXTREMELY grateful

Ken

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