WHAT IS THE LONGEST SOMEONE HAS HAD PSP? I am wondering how much longer my husband has to suffer, he is going into his sixth year?

[My1Grandma]

[peterjones]

hi granma hows it going well i reckon i have had it for 9 years and i hope i stay the way i am for another 9 years \\\ i am a great grandad and i also have psp but whatever happens to me i have seen my great grankids all 5 of them and they are all wonderful everyone of them\\ i think its between 7 and 10 years that we are given but who knows with psp that could mean anything i am sorry that your husband is suffering i hope that he will get some relief from it soon and feel the way i do god bless you take care peter jones queensloand australia psp sufferer

[flicka in reply to peterjones]

You sound such a great and positive bloke and have my admiration Best wishes Flicka

[peterjones in reply to flicka]

flicka thanks for your words mate i had just fallen over and hurt my knees this time and to be honest i was feeling down a bit after just coming out of hospital with stitches in my head a couple of weeks ago but i got up off of the floor and put my computer on and there was your message and i thought '' whats up with you just going to feel sorry for yourself '' but your message was my wake up call and put me back on track again so again i thank you flicka you saved the day peter jones queensland australia psp sufferer

[JoJo-K in reply to peterjones]

Hey, How's my favourite Aussie feeling today? Gutted you've had another tumble my lovely, what have I told you about break dancing? It shakes you up bad when the falls are so close together huh? I see you talking about being a great grandad.....I've never had a Grandad so I think I might have to adopt you. Like Flicka says you truly are an inspiration. Try keep to your chin up Pops and superglue that bum of yours down for awhile Thinking of you and hope you recover quickly from this last fall. I have duck tape and I'm not afraid to use it !!

Take Care my lovely, Lots of love JoJo xxxx

[peterjones in reply to JoJo-K]

hi jo jo hows it going ok i hope and what about mrs jo jo how is she coping now or has she been bad with it \\\ its a very cruel syndrome mate there's no class distinction colour or race is there

anyway hope she is good or as well as can be expected\\\\\well mate it looks like i am your honourary grandad then if you have never had one before but i dont know about the duct tape mate i dont know if thats to gag me with or not taffy\\\\\ i bet you have not been called that for a while matey\\\\well jo jo or TAFFY I WILL HOP INTO BED NOW SO GOODNIGHT TO YOU AND GIVE MY REGARDS TO YOUR MUM MY HEAD IS OK NOW THE STITCHES ARE OUT AND HEALED UP NICELY HAD SOMEONE AROUND FROM AGED CARE TODAY BUT I SAID THERES NO ONE THAT OLD LIVING HERE!!!!!!!see yer\\\\\ grandad\\\peterjones

queensland australia

[JoJo-K in reply to peterjones]

Hey Gramps, Your humour so reminds me of my Dad, when he went into residential care full time, the first thing he said was this place is full of old buggers !! We laughed when I said you are an old bugger too He was so brave, understood that with Mums PSP progressing she couldn't look after him anymore safety as they were both falling.

I lived in Surrey, just outside London in the early 90's got called Taffy a few times then The duck tape is my backup plan if the superglue fails to keep you from resting, wouldn't dream of gagging you....love to hear your stories. I'm hoping to visit mum tomorrow to see if she's more herself again. I'm hoping she's perked up a bit as she needs an X-ray on her shoulder from a tumble last week. It's impossible to physically get mum in my car now but have found an ace taxi service where we can wheel her straight into the vehicle while she is in the wheelchair.

Well sweetie time for my bed too. Sending you and Mrs J lots of love, JoJo xxxxx

[riosenior]

There is no simple answer. PSP is a very individual illness and as a consequence the rate of progression cannot be predicted. Consequential medical problems such as aspirated pneumonia often lead to the death of a person with PSP as a result of swallowing and choking difficulties.

[jillannf6]

hi flicka

i agree wiht what riosenio rand pete rjones have said

i have been dxd since dec 2010 but had it wiht balance problems /hnadwiritgn probs for 3 years b4 that

i am still here (typgin dyslexically!) and despit efalling over far too many times in a day an d

crying at absolutely nothing i am GOOD

so there is no answer to the quesiton

wha tdoes your neuro say ? or will he nto commit himself?

lol JIll

[peterjones in reply to jillannf6]

hi jill i wondered how you spelt dyslexic\\\\ just as long as you keep getting up mate thats the main thing your a champion too mate i admire your courage peter jones queensland australia psp sufferer give my regards to Ian

[Twinsplusone]

My mother is going on 11 years since first major symptoms with vision...

She is now tube fed, bed bound, and non verbal, and needs suction daily.

[Hidden]

The studies that have combined some data claim the survival rate for PSP (RS Type) is 2-17 years. I have heard a neurologist say he had a patient with PSP for 20 years. However, we have to determine if someone has the more common PSP (called Richardson's or RS) or has one of the subtypes like PSP (P - standing for Parkinsons) that has a slower progression (like Parkinson's itself) and a longer survival.

Sorry if this sounds a bit complex, but having PSP diagnosed is not always simple. Many have a combination of neurological conditions with their PSP (like CorticoBasalDegeneration), but these conditions usually shorten survival.

The other problem is that many who have PSP have other medical problems that confuses issues.

If someone is "healthy" and only has PSP (RS) then living past 10 years is quite probable (the last couple of years usually bedridden), but the neurologists now say a "typical" survival from symptoms onset is 7 years. Sometimes they say the "Median Survival" is 7 years meaning 50% will survive longer than the 7 years.

I guess this sounds so morbid, but I am only quoting statistics (and in this case statistics are not that certain). It's such an individual disease.

I suppose as a carer, I have to wonder the same thing as you, mainly because I do not want my wife to suffer through a long illness (she's about 4-5 years into the disease). Fortunately, she is a real trooper and while she obviously dislikes being tired all the time, and being in a wheelchair, and choking on liquids and not be able to look up and down etc etc, she takes everything that comes at her with real fortitude.

For those who suffer with PSP it's great to hear someone like peterjones and his great positive approach, and for carers, well, we just have to take it a day at a time and be as much comfort as we can to our loved ones. It ain't easy!!!! (Not for me anyway)

[Hidden]

I agree with Strelley, and other postings on here: PPS (Parkinson Plus Syndrome) and other variations, for example of Lewy Body Dementia, age and even combinations of causes mean there is no way yet of knowing a definite time because it is hard to diagnose exactly which form someone has or which infections they will get. All you can do is take each day as it comes.

It is just a personal observation of my own but I generally have noticed that when a voice comes on here with this question is because things have developed to a sad state where there is little or no quality of life, the carer is feeling desperate and if there is no tube feeding prolonging things it can actually be the end quite soon after the question is posed. I got to a point where I was only really looking for the slightest glimmers of improvement with mum and once I stood back I realised how futile my hope had been. Having said that the hope kept me and mum trundling along trying to get the best out of each day. I say this a lot and said it a lot when mum was still here-that it won't be forever and no matter how hard it all seems there is an end to the suffering for all of you. So stay strong, take each day as it comes and enjoy those little moments that make all the hard work worthwhile.

Take care, we know what you are going through.

[jimandsharynp]

Grama, The longest I've heard of is 11 years but since PSP is different in every case. Also any PSP patient could get aspiration pnumonia, fall with serious injury, serious UTI or be unable to eat and die of that, or, or, or.... I think you get the idea. There are not solid facts about what PSP will affect in a patient, when in that patient, or when they will die. For me it is non-productive to worry about these things. Each day has enough for caregivers and family to deal with. Instead of looking for the end of the tunnel it is more productive to light a candle in the dark, in my opinion.

Jimbo

[NannaB in reply to jimandsharynp]

Amen to all that Jimbo

Nanna B

[Len23]

I have previously responded about my wife's situation. After 8 years of being wheelchair bound, badly impaired vision, speech also impaired to the point of almost being unintelligible, disorientation particularly on awakening, choking on liquids, etc. And yet, last evening, our son came over for dinner after having visited his grandchildren (our greats) who live some 300 miles away. He had taken some movies with his iphone and held them about 6 inches away from her eyes and as she watched them, she responded by opening her eyes more than she ever has for the doctor or anyone else and had the sweetest smile on her face than I have seen in a long, long time. Caregiving is a burden, a big burden, but that smile more than made up for it. I just pray that others of you going through this dreadful experience can have such a moment.

Len23

[LeighaAnne in reply to Len23]

I know what you mean. when my dad smiles which is hardly ever, I take that smile with me the rest of the week.

[LizzieF]

Hi My1Grandma

My 81 year old mum was diagnosed with PSP in early 2009 (just after the TV drama 'A Short Stay in Switzerland' was aired). However she had been having noticeable symptoms since 2005 and before then had been doing odd things that were out of character. An example of this was when she was looking after her 18 month old grandson. She had left the front door unlocked and he had wandered out onto the road which she didn't notice! When my sister challenged her about it, she reacted totally inappropriately regarding the severity of the situation. She didn't seem bothered, worried about it or even upset at my sister's reaction. That could have been the start of it all who knows.

She is now bedridden, PEG fed, cannot speak, suffering with excess saliva and constantly choking on it. I know she is suffering and when she could still speak she said to me "I don't want to be here anymore". That really upset me and it made me feel like I was keeping her going when she wanted it all to be over.At least when she sees her grandchildren and her new great grandson she is aware of them and seems happy to have them here. Also she still has her sense of humour and we can get a laugh out of her so we know she still understands. As I'm typing now she is crying out and I don't know if it's in pain, distress or is she hallucinating due to the Hyoscine patches she wears to treat the excessive saliva.

Take care

LizzieF

[LeighaAnne in reply to LizzieF]

my dad his also going into his 6th year with psp. He does not want a feeding tube. he has a catheter in and is not bed bound yet. My mom is soooooo stressed. He too has a lot of saliva anc coughs and chokes too. he is not able to speak or walk at all. In January the dr.s gave him 6 months to live. So that would be June. this may sound morbid but me and my mom are sort of relieved. He knows the Lord so I know I will see him again. He is suffering a great deal right now.

[LizzieF in reply to LeighaAnne]

Hi LeighaAnne

I was told last June that mum was very poorly and in the final stage of PSP. Nearly 12 months later she is still here! PSP is very unpredictable, it's not like cancer where specialists give a reasonably good estimate of end of life. My mum has a strong constitution she has only had 1 chest infection, never had pneumonia and is never ill with a cold or flu or vomitting & diarrhoea even though I care for her and have had all of these in the last 4 years! It's amazing really.

LizzieF

[LeighaAnne in reply to LizzieF]

He too has been hallucinating a lot lately

[cawbird59 in reply to LizzieF]

Lizzie, WOW.... this sounds just like my mother's situation, same age, same symptoms. The saliva patch has been curing her mouth sore problems but like you said, she cries out of nowhere and it is very hard to watch. I look back at some of the out of character things that my mother would do and wonder if she had PSP as far back as 8 or 10 years ago! It's such a cruel disease.... I only wish that she was able to communicate. This website has made it easier for me to cope. Thanks. Cheryl

[My1Grandma]

Thank you for responding, it is nice to have others to talk to and who understand what is happening.

[Jem740]

Hi all, my Mum is 86 and all things considered has the constitution of an ox although her condition now has her immobile and wheelchair-bound, and completely helpless in all areas. The onset of her symptoms can be traced back to October 2007. During an appointment with her consultant this week she asked him directly how much longer she would have to put up with this and his answer was non-committal - ie that it can last for anything between 6 - 12 years. He then prescribed her anti- depressants because he thought that she was "looking a bit depressed"! Who can blame her? It is a most depressing, frightening and altogether unpredictable condition and it creates a feeling of utter helplessness in everyone close to the sufferer. We just want to make it better but we can't. All we can do is to be there at every turn and show them that we understand and care.

[shasha]

BEFORE BEING DXD WITH PD ( WRONGLY ) I SAW A NERO WHO SAID I WAS DEPRESSED AND PRESCRIBED ME ANTI DEPRESSANTS I TOOK THEN FOR WEEK BEFORE I STOPPED THEM AS I WAS ABOUT TO DO MY HUSBAND IN !!