I have come across posts that stated loved ones lived 12 and 14 years with PSP. Is this possible?
Life expectancy: I have come across posts... - PSP Association
Life expectancy
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aliciamq
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Hello. Last I knew the stats were MEDIAN life expectancy of 7 years post diagnosis, which is often years after first symptom. So, yes, many patients will live much longer than 7 years. Our neurologist said she had a patient still alive 18 years after onset. So, please, what is your concern, Alicia? What's going on, my dear?
Not much going on ~ We are still cruising ~ still going up and down stairs and still driving the carts at the grocery store. Each with great difficulty and assisstance, but, doing it. Jack is into 8th year, maybe 10 if we add the back ache and a misbehaving foot years. An MRI in 2011 got us to the movement disorder clinic and PSP was suggested right off. He was falling a bit by then. He has started to lose some weight and sleeps a little more. He feeds himself no choking. Anyway, thanks for giving me an opportunity to review😊 What inspired the question was sortof an argument. I casually threw out the 14 number and was corrected, so wanted to check. How is your mother?🌷
So a relatively slow progression for you. Nothing easy about any of it any way it happens, but I wish I'd had more time at the beginning.
My mother died suddenly the day after Christmas, with 4 of her 7 kids around, including me. We were visiting a distant sister. I'm still reeling. It's been a long time since I've not been caring for someone, and the grief over Henry I put aside to care for my mother has come back to pile on. I didn't expect that.
I'm at his place in the mountains for the weekend. Lots of beautiful snow. It's peaceful...as long as I ignore the news. Harder to do every day. That adds to the grief, too.
I am so sorry......
Sorry about you all loosing your mother - I
Am the eldest of 7 . We lost our 93 yr old father last March and my 90 yr old mother is on her own for the most part. I am useless to my sibs. I do facetime with her often🙂 I never could have imagined being 71 and still having a mom and dad😊 Very tuff to lose them. I will always picture you at the cabin. Hope the weekend was long enough. I tryed to take a break from the orange man the last couple of weeks - the news makes me tired.
Funny, there are 7 of us, too. I am 5th. My father died 10 years ago at 86 and my mother lived on her own until she was 91. Where are your siblings? My family is widely scattered over the eastern US, and no one lived close to the hometown, so when she couldn't be on her own, after my sweetheart died, she moved in with me, unfortunately a long way from her friends. We made the most of the Maine seafood, though. That helped!
FaceTime is good. One sister made a habit of calling every day at 4. It might have been for 5 minutes or 45, and often there wasn't much to talk about, but my mother looked forward to it. It was a good routine.
A break from the news is a good idea, but I can't seem to look away. Maybe now that my time is my own I can try to do something positive. Not today. The weekend wasn't long enough and I called off work.
Wishing for peace. Sarah
in reply to easterncedar
Sorry to hear Sara of your mom's passing. It's your time girl when your ready.
Dee
easterncedar in reply to
Thanks, Dee.
I remember when your mom moved in! My sibs are close - but for 1 of us in Phoenix, we are all in the Detroit area. I live closest to my mother, but getting jack into her house is a nightmare and she is out of my comfort range of leaving him alone for a few. If he is having a good day , I'll run out for bread and milk, but to take her to a Dr. Appt - I just can't. I serve as the sounding board for my sibs ~ that is loads of fun😆
Sounding board? Oh my. I don't think you can say you're useless. Hardest job of all!
Hugs.
Hi. Speaking from my experience with my mother who passed away 3 weeks ago - Life expectancy is a tough term in such diseases since it’s not necessary that speech, walking, eating, eye movement or any other form of movement or cognitive senses may remain till the end .
Symptomatically, mom had this ailment for 10 years and was correctly diagnosed 7 years ago. Last 2 years were broadly on the bed. Good health post diagnosis lasted only for about 4 years.
Anshuman
My wife’s movement disorder neurologist, who has treated a significantly large group of PSP patients, told us that this disease is highly variable and that folks with PSP Richardson’s variant, which my wife probably has, generally survive from 4 to 7 years from time of diagnosis. My wife was diagnosed 2.5 years ago. She was diagnosed with PD for almost 2 years prior to that, and has been showing PSP symptoms for 6 years.
But the Doctor also stressed the variability of the disease and said she has a patient who has lived 17 years from diagnosis, and another who lasted 18 months after diagnosis. It’s a horrible disease and cruel in so many ways. For all involved.
Wishing you peace of mind on your journey.
Warm regards
Dick
Thanks, Dick ~ we keep it pretty simple around her, therefore, pretty much peace. I wish the same to you. I have a daughter who is angry that her children are missing out on the typical grandmother experience. Things like that make me sad. My husband seems to be fine with just hanging out with our stuff in our house and me, too ~ pretty much😄
Yes, they can live that long. Larry’s physical therapist had one client who had lived and was still alive after 14 years. However; it is not the norm . Seven to ten years is usual. It could be less. Each case is unique.
Dad was Dx in Jan 2016, passed away in Sept 2018. He moved in with me Aug 2014 after a bad fall. Thinking back he was probably showing signs 3-3.5 years prior to that. Looking at that timeline would put dad right at the median of 7 years.
Ron
Sorry😐
Alicia, unless an actual brain autopsy was done (after death) on the patient there is NO actual proof that the patient was DIAGNOSED correctly. It could have been other than PSP or CBD, etc. Consequently, can the EXPECTANTCY be correct when we don't know if the DX is/was correct??????? If the "expectancy" was done by DX and NOT By brain autopsies we need to question.
Only with a brain autopsy can the ACTUAL BRAIN DISEASE BE IDENTIFIED. It's something I regret not having done for my son....it may not help the diseased but does help the research of brain diseases.
In my case it all happened so fast (death, for me, never seems to happen slowly and expectedly no matter how much warning). I now believe that if I want a brain autopsy I need to make arrangements as close to immediately (as possible) and NOT put it off for tomorrow. Tomorrow comes too soon, leaving that which we planned left undone .
Margarita....Los Angeles, CA, USA
There's a guy in my local Parkinson's/PSP group who had PSP for over 11 years.
Mom first displayed symptoms in 2004. I knew something was very wrong by 2006. A doctor observed something wrong with her in a chance meeting in town around 2010. She was convinced all her problems were related to Afib and set out to resolve this issue through 2009-11. 2012 she was dx’d with atypical PD. She refused to go back to that doctor. She went to many alternative medicine folk and tried a myriad of do it yourself therapies and generally refused to go to a doctor even though we begged her to when it looked like she had a stroke with a sudden onset of a weak and drooping left arm. Even then, it would be three more years before she was dx’d with CBD. She has been nearly completely immobile for the last three years in a facility. Just last week she was enrolled in Hospice (while throwing a massive fit). So... I mention this all because it is very hard to derive an “average” life expectancy IMHO when onset is not clearly recognized (by patient and/or medical practitioner).
By my observations, mom is going into her 16th year. By her formal CBD dx, she is going into her 5th year, (going into her 8th year from the atypical PD dx). By her acceptance that she has CBD, she is going into her 3rd year. Mom has been having significant problems for 8 years, and this is what drove seeking medical opinions — so it isn’t until this disease is causing significant problems that medical consults are sought, and thus becoming the basis for the beginning of the countdown- IOW, I believe a skewed number.
in reply to Ettavb
Hindsight being 20/20 I know Larry was exhibiting symptoms long before he started to fall in 2011. He was falling before that as he informed me later when I mentioned the 2011 fall. Somethings go back twenty years. Dropping food on himself at table being one of them.
I should have noted that I’ve worked in research and with statistical processes - just to explain why it may have sounded heavy on the observational points vs the sensitive and empathetic points.
My husband only lived 4 years after tentative PSP diagnosis. However, I think he probably would have been diagnosed at least a couple of years earlier if he had seen a doctor for some of the symptoms he was having. By the time he was diagnosed, he was only able to walk with a walker or by holding onto a railing or grab bars. His PSP was confirmed by brain autopsy.
Pat
My mom has CBD but is also into year 16. First noted symptom was 2004.
My mother died 7 years after diagnosis. That was the standard expectation.
I'm in my 4-5 year by my calculations. My first backwards falls were in early 2016 but I seemed to have begun mental slowdowns in mid 2015. For myself, movement and walking difficulties should be discounted as I've had Ankylosing Spondylitis since at least the 2008 diagnosis.
However, though I don't remember where, I did read once of a patient living 24 years. It would fit the bell curve of survivability.
My movement disorders specialist says she has a couple of patients into their second decade with PSP. Every case is unique, as is the individual.
Tim
Hi Alicia, there have been several posts this past while querying life expectancy and truth is no one knows as every one is different.
Please don't think I'm being cheeky, but my advice would be don't think or dwell on it, just live each day as it comes and make the most of it, for its time you will never get back.
Wishing you every blessing for 2020.
Lots of love, Nanny856xx
Life expectancy is one thing ,but quality of life is another I would rather that Kathy would pass away in her sleep ,her day to day existence is something you and I would not like,I see her every day and it breaks my
heart to see her trapped in a non working body , struggling to cough ,
can't speak , her body twisted by muscle contraction ,I could go on,
I looked after her for 4 years 24/7 and I enjoy every day I see her,but we
have to remind ourselves of the situation..
Peter
I'm so sorry Peter. It's so cruel xxx
Agreed 100%. Mom is very much like this as well at this point.
The more I think about the past, the more I recognize "symptoms" that were overlooked or no big deal; but I feel Mike has been dealing with something for about 8 to 10 yrs now with the last 4 more PSP signs...a definite significant decline the last 2.5 yrs.
He falls more with increased "stumbles" and is having greater weakness in hands.
Much more coughing when eating then he use to but can still bathe himself on a chair in the shower. Starting to sleep more and longer periods.
I feel if he declines in the next few yrs as much as he has these past 2 yrs he will be bed ridden and unable to eat much. But only time will tell. I just hope I can stay well and strong enough to continue to care for him. I seem to "breakdown" a lot these days.
Hi....my fears are your fears....my husband was dx just this past October after several years of being told “it’s the aging process “ and if his negative progression continues as it has, he may be bed ridden and unable to eat anything but thickened liquids and puréed foods within the next year or two. I hope I have the stamina and health to care for him. I feel myself slowly loosing him more and more each day. This is a devastatingly horrible journey !!!!
Take care and keep on keeping on, Kathy
Thanks mj - We chalked a few of those long ago symptoms as just getting older😐 I had one of those" break down" days today - my knees from getting him up😐I just took aspirin so I could sleep. Jack still bathes himself on the bath chair, but, I need to stay right with him bcz he falls out of the shower😱I will sometimes step out to grab my coffee while he is sitting. Well, darn if yesterday, He didn't fall out of the shower chair and all. I returned to find him and the chair wrapped in the shower cutain with water spraying everywhere - geeze o pete!! He had a couple of dramatic falls yesterday, so we are both a bit of a wreck today. Luckily, we can take it easy. And take aspirin😄
Mine is my lower back. Seems like with his stumbles, I am taking on more of the weight.
Mike is sooo stubborn and it gets worse everyday.
The doctor looked at me and then at him and said very loudly..do not attempt to hold him up if he starts to fall....he is too much weight and will injure you. He then looked at Mike and said if you are refusing to use your walker and fall then it's on you; but you can not ask her to keep you upright.
Mike had no answer but when we got in the car he said if it were you that was sick, I would help you. He truly just does not understand he is too much weight for me.
I talked to him last night about an assistant living.....he actually did not say no.....but will see.
If he would listen more and do what I ask of him....use his walker more instead of grabbing on to "things" which will topple or he hugs the walls, do his exercises; both mental and physical; eat slower and smaller bites..etc. Everything has just become a constant fight. Maybe I need a few days off and away to regroup.
I wrote you a note that has disappeared - I'll try again tomorrowish😊
Dear Mj, I feel for you. Your predicament seems so painfully familiar.
But this is what comes to me. I regret all the fussing and arguing I did trying to get my lovely sweet man to understand he needed to use the handholds and not walk without his walker, not wander, to wait for me, not grab at me, and on and on. He smashed things, broke appliances and plumbing and furniture, hurt himself horribly, got himself sent to the hospital and left me with displaced ribs, a ripped rotator cuff, a compressed spine, and ruptured Achilles' tendons.
The things is, the disease had, very early, subtly robbed him of his ability to process and respond to and remember his experiences and my words. It simply wasn't possible, wasn't possible! for him to factor in his tendency to fall.
If I could change one thing about our ordeal it would be that I understood that sooner. He wasn't being stubborn when he'd grab at things that couldn't hold him, or me, or freeze while I was trying to lower him to the toilet or on the stairs; he just could not remember, could not move, could not comply. I would get frustrated, panicky, often even furious. I made us both so miserable.
What I mean to say is, your man may not be acting inconsiderately, rather the disease may have taken that part of him away.
So what to do? My advice: Get help in if and when you can. Be patient. Moderate your expectations. Make sure the safety bars and supports are everywhere they might be useful. Look ahead and prepare for it to get worse. Don't expect him to adapt to this AT ALL. And, as your doctor says, don't try to catch him.
And try to take care of yourself a little, too. I was only in my 50s, pretty fit and 9 years younger than my guy and, now coming on three years since he died, I'm still dealing with the damage. So many of you are so much more at risk.
Love and peace, ec
I have to say that I’ve finally come to the same conclusion. It is the lack of ability to process, the cognitive decline — especially around anything that takes planning or that is in the future. I have advocated for mom and explained this concept to so, so many people over the years and nobody seems to really get it - even myself (though I usually do “eventually” get it).
The most recent example of this is when enrolling mom in hospice and she had an absolute fit. She can’t see or accept her condition or the fact that she’s dying from it. The one thing I expressed to the hospice team that I would most like, would be for mom to come to some state of Grace, some acceptance of the dying process — but in the last two weeks she has demonstrated anything but. It finally occurred to me that this is a “future” event; she does not have the cognitive capability to process this in the way I would most hope for her.
Hi there I can recommend getting a helmet for him, with the falling, my brother fell a lot to landed up in the hospital with a bad injury to his head, even with a brain bleed, other was stitches on his head, I got him a helmet, he had falls even tho he was watch closely, but no head injuries after that, they the patient has enough medical problems, Take care. Nettie
My husband is in to his 11th year,still able to walk with assistance and eating fairly well.Lots of work but his quality of life is still somewhat good. I know I pretty much held my breath in year 7 because that was my understanding that he would not live pass that,but here we are.His prostate cancer may take him before PSP.
One day at a time.
Dee
aliciamq in reply to
Wow - you sound like us - Jack is still speaking well and enjoys his life. We live in a good spot and have a big family around, so we can be pretty busy at times. We have been through(and wait for the return)of the prostate cancer. Geesh. I' seem to have many breath holding days. Days when he sleeps a lot make me think it could be his last 😑I think Of calling the kids over, but don't. Next day he'll be OK and I'm real glad I didn't call the kids. What a crazy trip we are on-happy New Year!
i Seen some who lived quite a few years. My husband, here in Canada was diagnosed nov/16 died july2019. Maybe different meds to prolong in USA and United Kingdom. You will not want them suffering so long. Once they can’t eat quality of life is awful and very sad. My husband speech went too. The choking for both of us awful, what I witnessed the tubing not quality of life. I at hospital with him 8 days no water or food. Life is cruel. He suffered lots, here in Canada not much pain meds. I hate to say it but as much as you love them kinder to die sooner.
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