What is the lifespan for someone with psp? When my sister was diagnosed the neurologist said between 8 and 10 years....
Life span: What is the lifespan for someone... - PSP Association
Life span
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Hi my partner has entered into his 10th year showing symptoms from 2007 things have changed over the last week or so he is wetting himself alot and not wanting to eat much oh and not saying much either god its soooo frustrating x
Escada, yes it is frustrating. we are not sure when my sister started showing signs of psp as she then lived in New Zealand. She now speaks very softly and one cannot always understand. Her one leg and arm are not functioning at all. She can only walk with the aid of two people. She doesn't listen and tries to get up and do things on her own. Resulting in falls. She is always constipated. She has a good appetite but what worries me is her constant choking. She has serious short term memory loss. If I look at the 4 stages of PSP, it looks as if she is in her forth stage... needless to say what happens then. If I read the posts then it scares me and breaks my heart that my sister must still go through all the pipes and what not... O dear how do a person survive the suffering that you see your loved one have to go through?
If you ever find the answer to the last bit of your post, please, please let me know!!!!
Lots of love
Heady
Hi, you mention the 4 stages of psp........where did you find out about these stages as all the bumf I've read does not mention stages. Thank you and God bless xxxxx
The pspassociation.org.uk has all the information on line. If you google stages of PSP, other sites show them as well......I do love google, it's so clever!
X
How long is a piece of string? Everyone is different. We were told 7 years from diagnosis but some people are diagnosed early, others late. One day my husband is going to leave me, or I may go before him, who knows when? I just try to make every day we have left as good as possible and not worry about how long. My husband can't do any of the things your sister is doing so she may be with you for some time. People reach different "stages" at different times with many symptoms over lapping. Reading the medical journals or internet reports, you would think my husband shouldn't be here now. It's hard seeing him like he is but neither of us can do anything about it so we just have to make the best of it.
A friend has just left us and she gave him a big kiss when she left. He gripped her hand and I know he would have liked seeing her even though he could only show it by the hand grip.
X
I love that, NannaB - how long is a piece of string? Perfect.
NannaB i had to laugh at your reply because it is the same thing i say to Brian when he asks me how long do you think i have got left.
We try not to think about time or stages we just live life to the best of our ability.
Janexx
You are a light in the darkness NannaB. Your clarity and strength are inspiring. x
Oh Nanna B, I love reading your posts/replies. You truly are an inspiration and I feel I know you so well just from this site. As you say, everyone is different. In some ways I'd love to know how much longer my mum has but in other ways I wouldn't. She's coming up 83 years old and has had psp about 5 years although as in most cases was initially incorrectly diagnosed with Parkinson's. As we all know is a bloody rotten condition! Love to you xxx
Hi Robmatlol, thanks for your kind words. I've just replied to your post about stages, as I said though, they do overlap but they are interesting to read about.
How is your mum doing? She is a good age but PSP is rotten at any age. I regret not doing more when we were younger but had our children in our early 20s, like most people in those days, and couldn't afford to travel. C is 68 now and has been diagnosed nearly 6 years. I've told our boys to do what they want to NOW. If they can afford it and have the time, don't wait. They have taken my advice, seeing their dad as he is and I'm sure they are concerned they may get it as well. Our 6 year old grandson informed me that they wouldn't be coming to us for Christmas this year as they are all going to India for 4 weeks. This was while he was still on the doorstep, he wanted to be the one to tell me. He has already been to more countries, much further afield than we have as we were going to enjoy our retirement travelling. Not all bad though; we now know much more about our part of the U.K.
Hope your day is good. C has a carer so I'm off to meet a couple of lovely ladies who post on this site.
X
Many thanks Nanna B. I haven't found anything about 'stages' on the psp website but I'll google them.
We never imagine that these things are going to happen to us or our family. We work hard, have our family and look forward to the retirement years to do things for ourselves, ie travel etc. but sometimes life deals a cruel blow. We are lucky that mum is older so her and dad did do a lot of things together. I can't imagine what you're going through being in your sixties.
Have a lovely day out with your ladies xx
We did have a good time, thanks. We met first at the "local" support group and then discovered we post on here. Going to one of these groups organised by the PSPA (UK) does put you in touch with people going through the same things so I would recommend them to anyone living with PSP. Even if you aren't a group person, it puts you in touch to meet up at other times if you want to.
X
I second that! I am not a group person, never joined anything like this site before. Wouldn't dreamed of it. But PSP changes everything, the support and love I have received from both is huge and something I would not have survived without. Our world is so small and lonely, you must meet others that know what you are going through.
Lots of love
Heady
When I first started researching psp 6 years ago, the median life expectancy was 5 years from diagnosis. Now they say 7. The major cause of this change, I believe, is that psp is being diagnosed earlier, rather than there being any improved treatment. It used to be very common for people to be diagnosed with psp only after years of being told they had parkinsons or other neurological conditions. Now it is being caught. Of course, "median" isn't "average," but many people will survive much longer. Our neurologist told us she had a patient who was alive 18 years post diagnosis.
It's impossible to generalize about stages in any reliable way. The disease affects each patient differently. I can see now that my sweetheart was showing signs at least two years before we began addressing what we have been calling his first symptom, a limp, which appeared two years before he was diagnosed. So he has had psp 10 years or more, too.
And then there are what they are calling the two different types of psp - one fast and one slow, one with more mental degeneration, one more primarily physical. I think like many named diseases, psp encompasses a spectrum of symptoms rather than being a discrete illness. Big help all this is, right?
I wish I could be of more help, but there it is - we just don't know! Easterncedar
Hi@easterncedar
Thank you for your reply. I know so little of psp... think one wants to collect as much info as possible. In South Africa it is an unknown disease... I have just found one person that knows someone with it. Even the doctors and therapists have to do research , before they can see my sister. The neurologist that first diagnosed her, was spot on but what an asshole.... told us to google it and that there is nothing he can do for her! Told her that it is going to kill her. I know it is the truth...but there are better ways to do it.
Anyway, it is so nice to read everyone's story. I do not feel so alone anymore!
Oh yes, our first neurologist was, although nicer about it, pretty much the same. We were also told to look it up on the Internet and there was nothing to be done. Pretty shocking, but I think neurologists are like surgeons, who are like engineers. Not in it to be caring, but for the technical or scientific aspects of the job.
We sought a referral to an expert in Boston, three hours from us, and she confirmed the diagnosis and put us through several courses of drugs that only proved that nothing would help. At least we knew we were trying! And it gave us something to do. She is the only medical professional we have met who had even heard of psp, except one physical therapist whose grandmother had had it.
This site is the best. The search function can bring up lots of information. There have been some wonderful experts here and many of the basic questions have been asked and answered many times, as people come and go.
It's lovely having a worldwide community. Someone is sure to be awake when you are! Where in South Africa are you?
All the best, Easterncedar
Hi, S and I are British, but we have spent a lot of time in South Africa. "Swallows!" Our GP over there, had had a patient with PSP, which was very reassuring, as our own here, hasn't. To date, three years into my husband's diagnoses, I don't think he has ever bothered to read up on it either!!! As for the consultant, we too, were told to go home and Google it. That's the sum knowledge our wonderful NHS, as ever said on the subject. Thank goodness for this site, the good folk on here have taught me everything!
Lots of love
Heady
Thank you easterncedar for all your info. Of course everyone is different and some live longer than others, there is no rule in life is there. This forum is fantastic, just to be able to speak to patients and their carers is so useful and offers a support that no doctor can offer. Hope you have a good day. God bless xx
"And then there are what they are calling the two different types of psp - one fast and one slow, one with more mental degeneration, one more primarily physical."
My wife is definitely of the "slow, primarily physical" type. To a point where her neurologist denied it could be PSP. Until 2 years ago. Being told that her very slow evolution is very rare.
I cannot find anything on this specific subject of the 2 different types of PSP. Have you a reference to give me?
If you search for 'types of psp" on the site search, you will find, among others, a post that begins " Strelley " as the question was directed to him. It was about 2 years ago. Although he has left the community and his replies no longer carry his ID, he was a great source. He discusses 4 subtypes. There are other relevant posts there, too. But I'd start with that one. Best, ec
How long ago was your wife diagnosed, if I may ask?
My Sister was diagnosed some 3 years ago but had probably had it for several years before. When she started falling 5 years prior, they said that she had a brainstem tumor....
My husband was diagnosed with Parkinson's in 2003. When I asked, in 2011, if it was PSP, (after reading about it and recognising his symptoms,) I was told by two different consultants at different times, that it wasn't, as it would have progressed much more quickly if it was. In 2013, they decided to do a brain scan and this confirmed that it was PSP. Did he have PSP in 2003? I do not know. I was told that Parkinson's does not change into PSP so I no longer know how long he has had it. Confusing ennit? X
Definetly! S had a silent stroke back at the beginning of 2011. Been told it was nothing to do with PSP! But all his symptoms, really kicked in then. The stroke was in the right frontal lobe, exactly where they say the Supernuclear is, but it's not connected?????? I know S has had this evil disease for at least 20 years. Again they say I am wrong. I think these doctors need to go to the university of life, before saying what right or wrong with a disease nobody knows anything about!!!
Lots of love
Heady
EC I love reading your "articles". You are able to disseminate information and combine it with personal experience which helps the rest of us compare whats going on with our mates to what has been learned by the scientific community.
Thanks EC
AVB
Why, thank you, Mrs. Birke. Very kind if you. I'm glad to think I can help. Mostly I'm passing on things I've learned here!
I think if the truth is told nobody can say for certain what the life expectancy is because it is such a strange desease and affects each person differently.
Brian has been unable to walk or use his right hand for 2 years or more. And is doubly incontinent. Unable to do anything for himself.
He does have trouble with some words and sometimes he is hard to hear and understand but most of the the time we can have a conversation.
but he still eats a fairly normal diet (cut up fine) including chinese curry and scampi and chips. He loves his food and drink.
So if you look at the stages that they talk about I'm not sure where Brian would be and time wise we was going to the doctors at least 8 years ago with problems that now can be put down to psp. So to us time and stages don't mean a thing to us it's all about today and what we can do rather then what we can't do and we make the best of now rather then worrying about how long we have left.
Janexx
Janexx. Thanks for your input!
Hi there, I am in SA, in Jhb. My hubby has PSP, we're now in our 5th year since diagnosis although, as with everyone else, he had symptoms for a little while before we started looking for answers. Feel free to contact me, would be great to know someone else in SA going through this.
S
Hi Sawa. Yes it is great to know of someone in SA. I am trying to get our own SA community for PSP and CBD carers and patients going. Just to create some awareness in SA. My sister feels that it it is only her that is suffering from this dreadful decease... Maybe we can meet somewhere in Jhb for a coffee... think it will be nice for both of them to meet each other. Can your hubby still talk, walk?
Hi, there definitely are very few PSP sufferers in SA! I know of one other sufferer in the Cape, and another family, also in Jhb, who unfortunately lost their husband/father to PSP about 5 years ago.
Hubby can no longer walk or talk, so not sure if it would be useful for your sister to meet him. But I'd be happy to meet you, or both you, anytime. I'll PM you my email address and phone number.
Life expectancy prediction may not be accurate as I understand that death is usually from falls or pneumonia, and not from PSP in itself...
The answer to the ultimate question... I have thought long and hard about this and spoken to the professionals. What is the start point. Bugs started showing what might now be regarded as symptoms 12-15 years ago. Falls and vision mainly but there was always an excuse for the falls. How far do you go back? We are now 9 months from diagnosis and from walking with support we now have a wheeled walker but it will not be too long before Bugs needs a chair to go out. Similarly, eating was a bit problematic but now is really difficult.
I am very rapidly learning that no 2 days are the same and our experience is a bit of a plateau then quite rapid deterioration. There is no set stages as there are so many overlaps. If you haven't done so then get all the p/work you can from the PSPA and the other agencies involved asap. Then get your piece of string or possibly elastic!
This may not be of much help but this site is the best place for help and especially support.
Agree with all above. I have asked really searching questions from the "experts " and found them very vague. All agree that there is no treatment and it is progressive.
Chris is following this path too. He was diagnosed 2013 but had been looking for help for about 4 years.
Decline can be sudden so just make the best of now, whatever stage, it will get worse.
Facing this is hard for us all.
Some-one on here will always have ideas whatever problem you meet and we are all trying to cope and supporting each other.
love, Jean x
Hi agree with NannaB a piece of string and Easterncedar moving average due to earlier diagnosis especially in UK and US. The problem is that PSP is not the killer but the disabled who opens the door for other killers, falls in early stages and pneumonia middle to late stages of PSP.
I believe that life expectancy depends on 2 things, the PSP sufferer's fighting spirit and stubbornness to hold to life and the care the sufferer gets from family and professionals.
The better the care the longer the life but I also think that we must start to bring in quality of life, it would be cruel to keep someone alive who has no quality of life and has given up the fight.
This is something I will have to confront as M is now PEG fed and catheterised and in a care home. She is very much fighting PSP, still aware, able to communicate if not tired, laugh and smile with family and Carers so not there yet. But the last chest infection knocked her back badly and exhausted her if the antibiotics had not been successful it would have been different. Hope the sunshine will keep her fit for summer so we can enjoy some more experiences.
I asked the care home what took their mainly elderly dementia and Parkinson's clients and it was similar to PSP falls and pneumonia but their average nursing home stay was 18 months again an average.
Tim
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