Just a bit of advice needed .what do people find the life expectancy of people with psp , we think dad as had it since 2015 , can still walk with aids , but tumbles a lot more now , his eye sight sometimes plays him up and can't see properly and some times chokes on food, we have noticed a decline in last 6 months and go psp suffers stop talking in the end
Any advice would be gratefully received. Just to give us some idea of what to expect .
It’s a good question most of us ask. The usual diagnosis is 7 to 10 years from onset. There is a type of PSP called Richardson’s PSP which is only 5 years from onset. One physical therapist told us she had a client who was 14 years into it. It all depends on your father health aside from PSP. If he is in good shape otherwise he could live for some time.
Jeff
I didn’t know there was another version of Psp....Richardson’s PSP
do you know of any links on this type please? X
Looking on Google it’s mostly technical descriptions.
Christine47 sent me this 2 years ago in a private message:
In a response to your message about the year Larry is in, I agree with EC. There are too many variables, but status is usually is determined "since diagnosis." Once I heard that symptoms actually may have started 10-20 years prior to diagnosis. The variables may include misdiagnosis of PD or AD, type of PSP "The new criteria recognize the various phenotypes of PSP. They are PSP-Richardson syndrome (about 55% of all PSP), PSP-parkinsonism (30%), PSP-frontal dementia (5%), PSP-ocular motor (1%), PSP- pure akinesia with gait freezing (1%), PSP-corticobasal syndrome (1%), PSP-progressive non-fluent aphasia (1%), and PSP-cerebellar (<1%). The remaining few percent are combinations of these or still-unrecognized forms." And then the amount and type of exercise, mental activities (e.g. chess playing or work), diet and supplements done before diagnosis, maybe stress, weight, overall health status before diagnosis, age, exposure to toxins, smoking, alcohol consumption. My husband is in his fifth year since diagnosis with his first obvious symptoms in 2008 or 2009. His neurologist said his progression is "slower than average" since he can still walk . Ido look for plateaus, then a step down the progression trail and try to deal with that symptom. I hope this is helpful. It is frustrating I know
Christine
Ooh thanks Jeff! Christine is so clued up! X
Hi Amanda,
Steele-Richarson is just another name for PSP. When Rod was diagnosed the neurologist also referred to it as Steele-Richardson syndrome. It was first described as a dinstinct syndrome by John Steele, J Clifford Richardson and J Olszewski in 1963 following Richardsons clinical observations on several patients with a unique syndrome in the late 1950's. It's not a different PSP, in fact it's probably the most common followed by the variant, PSP-Parkinsons where the symptoms are slightly different, all with the same outcome though.
Hope all OK with you, please let Barbara know I will be in touch soon to organise 'girls on the town'.
Love, Hils
x
Copied from a old post from Strelley,you can do some searching under his name,very knowledgeable fellow about PSP and I think just about anything.....my husband is in his 10th year minimum.
Dee
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Hi Strelley
Is there anyway of knowing what form of PSP someone has? Eg. PSP RS / PSP P could a neurologist know
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5 years ago•19 Replies
Hi Rocky
As mentioned previously it does depend and, whilst important to acknowledge that this is is life limiting illness, it’s best not to focus on ‘averages’. So the average life expectancy according to the NHS is 6-8 years. However, people can go on longer. My husband is 6 years since diagnosis this November and is still walking and I can just about understand his speech - but we think he has the PSP-P (Parkinson’s variety). PSP sufferers do tend to loose their ability to speak - hope that you are getting the right level of support, including speech therapy.
Take care and do shout if you need more info or support.
Helen
As you see from other posts, life span is variable. At diagnosis we were told my husband had 5-7 years left. He had symptoms for about 3 years before but only looking back and remembering odd things happening. He died 6years and 1 month from diagnosis. At that point he hadn’t walked for over a year, couldn’t speak, blink and was PEG fed.
Rather than thinking ‘how long’ I found it much better to take every day as it comes and make them as good as possible, making memories. During those six years we knew of many friends, neighbours, acquaintances who died from other illnesses or sudden strokes, heart attacks etc. Every time I told Colin, while he could speak he would say, “Another one before me”.
Fortunately my darling loved going out so we did so several times a week and our last visit was to Hastings on the coast a week before he decided he didn’t want to be fed any more, leaving me 11 days later.
At the time of death he had no other illnesses. Infections, pneumonia etc may have shortened his life.
Make the most of your dad still being mobile and speaking and see if there is anything he would love to do, see etc before he can’t any more. He may have many years ahead of him.
Best wishes
XxxX
hi my husband has had it since 2005 x
Who knows, is the simple answer. Personally, I think PSP is something they are born with, certainly I can remember things happening a good 20 years ago, that I can now look back on, with hindsight and realise that it had to be PSP. Who knows what I had missed before that. His previous marriage broke up, some of the reasons he would own up to, again could be signs of this evil disease. Steve died three years and three months from diagnosis, but had had a stroke two years before that, which bought on many of the PSP symptoms.
If you are looking for advise, then as NannaB has said, concentrate on now, do the things your father CAN do, today. Today has enough challanges, without worrying what tomorrow will bring.
Sending big hug and much love
Lots of love
Anne
My dad was diagnosed 14 years ago. He started having a full time carer about 6 years ago. Although the quality of his life declined dramatically In terms of speech, movement, eyesight, swallowing we are very grateful that he is still with us and can witness his grandkids growing up. Big hugs to all psp sufferers and their carers, families xx
Looking back I can say I first realized mom had this condition 15 years ago even though she refused to see a doctor (even when I was begging her to go13 years ago) and it wasn’t until 2011 (I think) when she was first diagnosed with atypical Parkinson’s. It wasn’t until 2015 that she was diagnosed with CBD but even then she rejected the diagnosis. Back in 2011, I researched her symptoms and came up with a possibility of CBD, and at that time - a lot of the literature stated a 3 to 5 year prognosis, which I have since found not to be very helpful especially for some of our longer-term care planning. She has been in the care facility now almost 3 years - she has been bedridden for the past two, she speaks but only I can understand her for the most part. She does plateau and then seemingly overnight it’s a new stage but at this point there really aren’t that many stages left and yet she seems to me - every time I visit - steady as a rock in her current limitations. This year I had to rearrange the financial planning to avoid shortfalls in her estate to cover the care facility costs. I selected one of the nicest and most expensive facilities with a private room based on the actuarial “predictability” of this condition from literature I read 10 years ago. She has now exceeded even the farthest out point I had previously considered. She was in great health, (something she worked at all her life) but even in this past year - she stated regret in doing so only to end up fully incapacitated at this point in her life. She keeps saying now she wishes she’d go quietly in the night or quickly with a heart attack. It all has made me questioned what exactly a good life entails. I’d like to say that in spite of her misery we’ve been able to enjoy her still being around to watch her family grow - but the reality is her personality changes have made her so self-centered and not terribly nice a lot of the time that it is just difficult to have much of a connection at this point except to answer constant demands and requests for care issues (many of which just can’t be solved due to the condition). Sometimes I hesitate to share my story because I think it’s a particular depressing variant of the outcomes, but I would like to add caution in trying to guesstimate the end. I do you like Nanni B’s suggestion of an approach of every day on its own terms.
It's my understanding that the main difference is that people with PSP Parkinson's usually do show some response to carbadopa levodopa. Not sure if this is a way to tell though. My husband lived slightly less than 4 yrs from diagnosis. To be fair though, he delayed seeing a doctor for so long that I believe he could have been diagnosed at least 2 years earlier. His PSP diagnosis was recently confirmed by brain autopsy.
Pat
My husband has been diagnosed 13 years ago. The neurologist says that it appears to be a ‘benign’ PSP. He is progressing downward, with many different symptoms, from falling, hallucinations, eyesight, speech but slowly. His neurologist sometimes appears confused! Until 6 months ago, he attended ‘Parkinson’ exercise group but now is unable to go. It appears to me that every patient reacts to this dreadful neurological disease differently! After summer at the lake is over, I will be taking him to a place with reclining bikes - strengthens his legs and he loves it.
I am now 74 years of age and not looking forward to what is in store for me as a caregiver. It is draining! That is my life - ‘ for better or worse ‘!
My husband started seeing doctors in the late 90’s for fainting spells. I believe this was the beginning and that he was misdiagnosed with vasovagal syncopy. In ‘05 he fainted and broke his neck, was fused from C3 to C6. It’s a miracle that he survived, let alone still walk and have all bodily functions working! After that, the doctors said all of his symptoms were from the neck injury. I found a fantastic neuro doctor who finally diagnosed him with CBD. Then he changed his mind and said he has Lewy-body. Looking at all of the research available I’m thinking he has MSA. Anyway, it doesn’t matter. We’re treating the symptoms. If I’m right... he’s still going strong after 20 years. I honestly think what’s going to take him out will be a swallowing issue, based on current symptoms.
I don’t focus on the what ifs. I live each day trying to stay in the now and cherish each moment. I video him all the time so that I can compare today to yesterday. I have an ache that never goes away bc he is disappearing in front of my eyes but I have videos and photos to look back on during melancholy moment.
No two people are the same. It takes as long as it takes.
Love from I SewBears
Dad got his Dx in Jan of 2016, probably showed symptoms 4.5 years prior. He passed in Sept 2018.
I realize it is very hard to not fixate on time remaining but I encourage you to try and make the most out of every day.
Ron
I agree with Jeff. it's a good question most of us ask. And the answers seem to vary greatly. Although the movement disorder neurologist was reluctant to answer, he did say 7-8 years after onset. One to two years after swallowing issues. When it began, it's hard to tell for sure. My husband had symptoms about five years ago. He can no longer walk, is incontinent, and has some very mild cognitive issues. He lost a lot of weight about 2.5 years ago and is very thin. His left side is affected much more than the right and is almost useless. Other than that, he looks pretty good. Of course I'm with him every day so I don't have a clear view.
I wish I had the answer to this question. If I knew our time was short, I would hire a lot more help. I really need it but want to be conservative with assets in case we're in for a long haul.
Either way, you don't really win in this game. The caregiving is difficult and sometimes I feel as though my life is on hold (although I need to get over that feeling because this is my life and I don't want to wish it away). And when your loved one is gone, then you have another difficult journey ahead of you.
Enjoy life now. Some days are better than others.
About six months ago I was having a nice lunch with friends that I don’t see very often. One of the gals asked me how I was doing and I was surprised at my response. I said “my life is on hold”. At the time I didn’t know that I felt that way or where the words came from. I think I may have been a little envious of my friends who seemed to be having a great time out and all I could think about was getting back home to make sure that my husband was okay. I don’t wish my life away either even if sometimes I feel like it’s bleak.
I understand. I think a lot about the future and hope I still have energy when this is over although I'm sure determined to have a new life with new adventures.
Just today, a trip to San Diego just about fell into my lap. All the pieces came together so easily so I will be taking a three day trip. I used to go on a few weekends each year with different groups of girlfriends but now all I do is go to Costco or the grocery, maybe an occasional lunch or yoga class. I always loved going away on a weekend, but then always knew I would be going back home to my wonderful husband. That will not always be the case. This will be a good break although I'm already wondering if I'm going to worry about Sandy while I'm gone.
Enjoy your trip to San Diego! How far is the journey from where you live?
Our BIG outings are Costco and groceries too 😂 Today my husband had an hour of PT and during that hour I ran three separate errands. Yoo-hoo!
It's about a 3 hour flight.
San Diego is only about a 5 or 6 hour drive from here (one way). I should plan a trip to the beach with hubby while I still can but I wonder if I have the energy. Oh my gosh, just thinking about it makes me tired. I never used to be like this so I guess caregiving is taking its toll on me. You are inspiring me though 😊
I hope you have an awesome trip!
We'll worry for you!! Enjoy!
Thanks! As long as someone is doing the worrying, I can let go of it. haha
Seriously, worry never helps anything. If we can get away for a bit, it's good. We'll be back home soon enough.
My wife suffered for at least 4 years from PSP starting in 2015. However we believe she may have started this downward trend since 2012. The problem is the difficulty getting a accurate diagnosis. My wife was originally diagnosed with lewy body dementia, then Parkinson's and finally PSP approximately 18 months before she passed away in November 2018.
God speed.
you get so tire that is to long
Psp
swollen ankles - is this usual with PSP
PSP 
