How long has you or your loved one had PSP?

Hi all, been going down the old road, why?how? Etc. etc. and have come up with this theory!

How long has you or your loved had PSP?

From reading all of your comments over the last few months I am beginning to realise that most people seem to be lasting about 10 years (give or take) from diagnoses. With that wonderful thing called hindsight I know S has had PSP symptoms for at least ten years before we found out what was wrong. At least, that's when I started noticing little things. I went to the opticians to get my eyes checked because every time I was in the car with S, we seems to get rather close to the curb! (Of course it was me with the problem,) I now know that it was the spacial awareness going in S. About the same time, the two year old temper tantrums seem to get worse, but how long had this been going on before I actually started to question it, another 10 years? Therefore 20 years of showing symptoms.

Now we all know that PSP is an extremely slow condition, so using exponential curve, could he of had PSP for 40 years before that, not showing any signs of symptoms? The point I am coming to, are you born with PSP? Nobody knows what causes it and all the research seems to be to find the trigger, but what if it's a genetic malfunction at birth?

I know that's a frightening thought, because that means no cure, but it might help get the symptoms recognised a lot earlier and therefore some of the drugs might be able to help if taken sooner, before things get beyond repair.

Or does this just prove the point, that I really have lost the plot!!!!!!!

Heady

20 Replies

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  • Dear Heady

    Probably, possibly. But I do think I agree that if we all look back and take stock, we will see that so many signs were there long before the loss of balance, the change in personality, the falls, the coughing, the choking, the constant demands, the aggression, the apathy, the dementia, in fact every b - thing.

    I am absolutely up to here with ALL the professionals who doping and out of our lives, promise much and deliver little. I will say this again, with PSP, as far as most of our medical profession is concerned, we are on our own.

    In my darkest moments the thought of this going on for much longer fills me with absolute dread, for my husband and for me.

    Sorry, it has been another long day, starting with another wash load of bedclothes.

    Take care

    Regards

    Dorothy T

    long and troublesome day, starting with another load of wet bedclothes.

  • Dear Dorothy, Sorry about your day. Hang on! Easterncedar

  • Dearest Dorothy

    I so agree that signs are there with hind sight, and with awareness, perhaps in future, the disease could be a "possible" in the future and treatment that helps keep speech, swallowing and mobility better for longer could be applied much earlier.

    I am sorry to hear you are having such a bad time. I too have been standing at the washing machine at midnight doing maybe the 6th or 7th load that day, in that very dark place, same washing, time and time over, wondering where and how it will end and how much longer I could cope. There is nothing I can say that makes it any better, but wanted to say we all understand and sympathise. We do cope, even when we are crawling into bed in tears, wondering if we can face another day, if we will get any sleep that night. The next things comes and we deal with it, we find the strength to carry on from somewhere. All I can really say to you is that when it is over, you are glad you did carry on, glad you were able to be there for a loved one right through their struggle and fight, glad you were able to help them physically and emotionally if possible. You should be really proud of the job you are doing and I bet you are doing amazingly. Wish I could magic through that washing, the next linen change, the next shower, just to give you a break! At least on here, you know that everyone knows exactly how you feel sometimes.

    Offering love and support remotely. xxxx

  • Oh my precious Dorothy, I feel for you. Sorry you had such a sucko day.

  • Yes Heady I agree. I know I had restless leg every night for years before the PSP diagnosis. Also I lost interest in my hobbies like golf, fishing, hunting years before anything to do with balance became a problem. I laugh whenever I read a medical website that says "unexplained falls within the first year". Since ii know I had symptoms years before any falls. Balance and falls seems to be a later symptom for me. Dizziness and breathing problems came three years before any falls.

  • Hi Heady

    I think your thoughts are very interesting. As you say, you are travelling an old road with this post. However, for those who may want to review the previous thoughts on this subject may I briefly share the following:

    Many studies have now been carried out with respect to the clinical nature of PSP. While there are still more things to learn, neurologists have described at least 5 sub types of PSP. Two of these are the ones mostly spoken about on this site. There is the classic type called PSP-Richardson's and PSP-Parkinson's. (I will add the characteristics at the end of this post for those interested, gathered from a synopsis on the CurePSP site).

    An excellent review paper (that has been generally confirmed by others) gave the prognosis of PSP-Richardson's as 3.9-8.7 years and PSP-Parkinson's as 6.8-16.6 years. There are a few on this forum who would probably be diagnosed with the Parkinson-like PSP, which they call "the slower type PSP". However, most would be the classic type.

    General comments on prognosis found in a few reviews may indicate that some PSP sufferers can live about 10 years and beyond with good attention to other health and nutritional issues. In practice, most are quite debilitated for the last one to two years of the disease.

    We know (like many other neurological diseases) that in PSP, the protein that becomes toxic and probably causes the eventual death of the neurons, commences the process some 15-25 years before symptoms. There is a genetic component to PSP but researchers do not think it is a prime component in most cases. Whether one is born with this genetic component would be difficult to establish (especially since there are no biomarkers - in blood, urine etc etc at present to identify whether a person is susceptible to PSP. Also, diagnosis is only definitive at autopsy).

    In hindsight, many carers and sufferers will see certain symptoms that may extend a long time in the past. With some, there are slow subtle changes, and others have a rapid show of symptoms where the severity increases in a short space of time (1-2 years).

    For those interested....

    1- Richardson's syndrome ("classic PSP"): lurching gait; postural instability; unexplained backwards falls; personality change; cognitive decline; slowing of vertical saccadic eye movements ("an early telltale sign"); eyelid abnormalities; severely impaired spontaneous blink rate; slow, slurred, growling speech; swallowing difficulties; overactivity of the frontalis; surprised, worried facial appearance; muscle tone can be normal; acoustic startle response absent in most patients; auditory blink reflex absent in most patients. "The median survival in the original series was 5 years from disease onset; in larger, more recent studies, disease durations to death of 5 to 8 years have been reported."

    2- PSP-Parkinsonism (PSP-P): limb bradykinesia; limb rigidity is more common and severe than in patients with Richardson's syndrome; jerky postural tremor; 4-6 Hz rest tremor; asymmetry of limb signs in some cases; axial rigidity; "moderate or good improvement in bradykinesia and rigidity" following levodopa therapy, "although the response is rarely excellent"; acoustic startle response absent in most patients; auditory blink reflex preserved in all patients. Those with PSP-P are "commonly misdiagnosed with Parkinson's disease." "Falls and cognitive dysfunction occur later in PSP-P than they do in Richardson's syndrome and, perhaps as a consequence, the time for disease duration to death is about 3 years longer in PSP-P."

    Cheers

    T

  • Very informative and helpful, thank you.

  • When we first got the diagnosis of PSP 3 years ago, and I read that the median survivial rate was 5 years from diagnosis, I was upset and horrified. Since we'd been consulting with a neurologist because of his foot drag for 3 years before we heard of PSP, I hoped that we had a relatively early diagnosis, and we would do better than that 5-year median. (Not surprisingly, it was when we got a new, very young neurologist that we got the diagnosis.) So many people have written here of the years and years they spent going from one diagnosis to another before PSP was mentioned. I suspect that an update on that the 5-year statistic will show that the survival rate is lengthening because of greater awareness of the disease and thus earlier diagnosis. Obviously, it won't yet be because treatment has improved, although we've decided to keep being optimistic that something will be found. Why not?

    As for when the first symptoms appeared, as many people have mentioned, in hindsight there were changes that could be precursors going back many years, but was it aging, or depression or just the changed routines coming from retirement that caused him to give up his hunting and fishing? (just like McFly) In an earlier time, I think it might have just seemed that he was one of those people who was aging faster than usual.

    It IS interesting to think about, Heady. Thanks for bringing it up. And I appreciate Strelley again setting out the different subsets of PSP, although I can't figure out which more nearly describes my sweetheart. It will give me something to talk to his neurologist about when we go to Lahey in 2 weeks. Thanks, Strelley!!

    All the best to everyone, Easterncedar

  • Heady, There are no medications or treatments for PSP, only for symptoms which is a different thing and not a cure. As to length of life none of us, with or without PSP, can say. You could aspirate in the second year of PSP and die of pneumonia. I don't think anyone can determine length of life with PSP or Cancer or any disease. I'm sure you've heard storied about cancer patients who were told "you have a year to live" and who lived another 10 and died but not of cancer. My mode of thought is "Why get hung up on what stage your loved one is in, or how long they will live?" Take each day and live it as best you can and HOPE there is a tomorrow to wake up too. Worry about what you can't control is a waste of time and energy that can be spent other places. IMHO

    Jimbo

  • Heady, Sorry, one more thing. When my first wife died of CJD (another brain disease) the doctor's said "Don't spend time trying to figure out how she got it or when it started. That is not productive nor does it help in any way".

    Jimbo

  • Hi Jimbo,

    I know you have been through the mill, with these awful conditions, but was your doctor right? I can't help feeling if I knew when this started it might help me understand and put into perspective all the chain of symptoms that WE all have gone through.

    Heady

  • Original diagnosis for my wife was Parkinson's. Second opinion neurologist said "Either Parkinson's or PSP I can't tell but if you put a gun to my head and made me choose I'd say PSP". Turns out he was right after a third diagnosis. Of course you can't tell without a biopsy of the brain at death if it is PSP, CBD, MSA, or some other disease. A book by one lady "Finding Meaning With Charles" husband was diagnosed with either PSP or CBD but biopsy confirmed the opposite. Excellent book as she discusses things they tried that didn't work and how they coped (what they did). They can be pretty sure but because there are a few brain diseases they can't be ABSOLUTELY positive without a biopsy (only done at death). This disease was identified in 1960s and there is so much that is not known about it's origin etc. at this date.

    Ask yourself these questions. 1) If I knew when this started would it make a difference to my loved one today? 2) If I knew the cause would it make a difference to my loved one today? 3) If I knew how long my loved one has to live, would it change anything today? 4) Where can I make a difference in my loved one's life remaining? Of course the last question is the most important of them all. Hang in there, it will be a rough ride but we can do it.

    Jimbo

  • Thanks Jimbo, you sound so strong, I'm sure you will say only on a good day, which I suppose we all are! I am trying to stay positive, but it's very hard at times. But we off to South Africa again on Tuesday for seven weeks, so it will be lovely to have some sun on our backs, it's bound to help out a smile back on both our faces!!!

    Love Heady

  • Hi

    Have a great time in s Africa won't yoy

    It is good tha you can still do these I things.

    Lol jill

    :-)

  • Thanks Jill! I'll try, it's a bit like running away, we make a bit effort to leave PSP at home and if S can stay upright, we manage it pretty well. The airports help a lot with wheel chair assistance, although he is not in a wheel chair, it's a great help, having someone to push him around the airport and help us through the transit lounge! We miss all the queues, should have thought of it years ago, when we could really enjoy the privilege, still you wouldn't want every Tom, Dick and Harry using it!

    Love to you.

    Heady

  • Bonjour all! nothing to add except I've just come off another posting where briefly the question was..'as PSP/CBD troubles are targeted in the neck area, could having had whiplash or neck surgery have triggered it off?'

    it was interesting in that like the person's mother-in-law my bride had had both these problems and it was something that was always at the back of her mind. But does everyone whose been in a car accident get PSP/CBD???!!!

    Again we're clutching straws and I have to rally to Jimbo's mindset....why worry ...be happy. (Or as happy as any carer can be in these dire circumstances.)

    With you all in mind, best brian.

  • Hi Brian,

    S hasn't had any of the things they say could trigger PSP, but if, as I asked, perhaps the trigger was a lot earlier than everyone is looking. My only concern is everyone treats this as an old person's disease and it's not! that when the nasty ".....!" shows it's self in its glorious colours!!!!

    Heady

  • Hi all, My hubby has the fast form of PSP! 5 year diagnoses by the specialist but to be honest this could have started well over 5 years before this, just cant tell? anyhow i have read and my mother in law has been told that it is the mothers stressed Genes that have effectively given her son PSP! If this is true then he has had PSP since birth and something has exasperated it and it has emerged to the form we all see. Dont know but we all go on the search to see how our partners have got such a thing, it just is and soon i hope they will be able to test for PSP and stop or cure it. Let all hope so :) Carers will always want to know how long their partners have to live for a variety of reasons but the last reason is we hang on to our partners until we are stressed and passed the maximum endurance of our abilities to cope, and if we new how long it may give us the answer of whether to hang on a little bit longer rather than hand over the job to a nursing home. Take care all, we are all apart of the PSP community together so love to you all

  • Allowing for the age of all the sufferers at the moment, I wonder if the war and the lack of food, stress etc had anything to do with it? I would of thought carry a baby during those times would be enough to trigger anything!

    Heady

  • I looked at my husbands life quite closely, chemicals from work, bangs on the head, alcohol ect ect but the changes started to show about a year after his leg operations so my guess is anesthetic from his operations. he hadn't really been sick thoughout his life before them, not even a cold he was a very fit man apart from stress in his forty's and came down with PSP just after turning 50. i am sure there is a link somewhere but the professionals will have to look into that as i'm not a chemist. everyone do something nice for yourselves today :)

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