Does anyone have any idea of the incubation period of PSP?

[jimandsharynp]

My first wife had CJD which is another rare brain disease. The neurologist and other doctors told me "Don't try to figure out where she go it because the incubation period can be MANY years". Is that true with PSP? Does it begin just before the first symptoms or many years before that? Any information would be appreciated. Thanks, Jimbo

[Hidden]

Hi Jimbo

The researchers have identified a strong link between neuron damage and death and the tau protein that "breaks off" the main microtubule network (because it is hyperphosphorylated). Once this happens the tau forms toxic tau (called oligomers), which eventually forms neurofibrilliary tangles. It has been documented that such tangles can take some 15-25 years to form, and hence the processs of neuron death is slow and clinical symptoms may not appear for many years after this process starts. This process will be similar in Alzheimer's and Parkinson's etc. It is estimated that Parkinson's symptoms do not show until at least 50-80% of the dopaminergic neurons are dead (in the substantia nigra area of the brain).

(Incidently, it has been recently documented that the toxic tau can move along neural pathways and interact with normal tau in the neurons and turn them "toxic". PSP is unique in tauopathy diseases because other brain cells apart from neurons, are affected by tau tangles e.g. astrocytes)

So, yes, there is a long "incubation" period for many of these diseases that can be over 20 years before symptoms occur.

T.

[jimandsharynp in reply to Hidden]

Strelley, Thanks for the thoughtful response. Much appreciated. I have to wonder what the earliest the Tau acting up has been found in a person NOT having any symptoms. Wonder if anyone is looking at that aspect. Jimbo

[Heady in reply to jimandsharynp]

I doubt it, Jimbo! Why would they, in fairness. If PSP was heredity, I suppose they would be looking into our children, therefore might find some answers, but thankfully, it appears not to be, so that will close that useful avenue.

Our only hope is they may start looking at the children of people with Alzheimer's, as that seems to be fairly similar. My mother has just been diagnosed with it, my grandmother and uncle had it, so I would be more than happy to be tested, as unless the proverbial bus gets me, I will be prime candidate to get it! Though, it's probably to late as I'm nearly 60 and no doubt already showing signs if that particular nasty beast is lurking!!!

I think that's the real huge problem with all these conditions, nobody recognises the very FIRST signs, I doubt if the medical profession even know what they are! When did S's first fall become a symptom of PSP? Or did he really just trip over the dog or what ever!!! Who knows??????

Lots of love

Heady

[jimandsharynp in reply to Heady]

There is a study going on in the USA of people who don't show any signs of Alzheimer's. They are tracking the group over a period of many years. I think they start in their 40s but not sure. Hope they find something.

Jimbo

[satoristar in reply to Heady]

My experience as well, Heady! Only in retrospect!!

[Heady in reply to satoristar]

Oh for a dose of hindsight before the event!!!

Lots of love

Heady

[jillannf6 in reply to Heady]

i `agree heady it is v difficult to see the 1st signs of any brain problem

ll JIll

[Heady]

Hi, this all goes with my theory. PSP sufferers may have been born with it!

Is PSP like a new tyre? When do you notice that it is wearing away, the day you put it on your car? Or several hundred miles later.? We all know that a tyre is losing rubber from day one, but it goes on for miles, before it even shows a slight sign of wearing. Even with a small bald patch, a tyre is quite capable of working properly. The tyre is constantly wearing away, surely the brain is similar. Not until there is significant damage, do we even notice that something as gone wrong!

I KNOW S has been showing signs for years, how long before that did he have PSP, with no symptoms. I seriously can't get my head around, that it started when the symptoms did. This Tau, must take time to build up, long before it takes control. The brain is far to complex to allow this to happen quickly! Unless it takes something traumatic to set it off, which surely, they would have found by now, or we would all be reporting similar events. Which is not happening!

I say again, the researchers really need to TALK to sufferers and their families to get a feeling for this disease. This is NOT an old persons condition, it must have started, at the latest, when people were in their twenty's, if not before!

WHY, OH WHY CANT THEY SEE THIS!!!

Lots of love

Heady

[satoristar in reply to Heady]

Heady, my husband, who has PSP, Compensated Congenital Chronic Adult Hydrocephalus (since birth), and Frontal Lobe Dementia, along with several genetic personality disorders, and I have been married for 50 years this September. I profoundly agree with every single word have written on this site. Your insight is deep, and your ability to intuitively connect the diagnostic dots is far and above most all doctors.

Thank you for resounding the truth which so many of us have experienced. Whatever each our genetic draw of the cards, some long day into the future, medical science will be able to acknowledge that "I was born this way!". Maybe then, and only then, will they begin to look for what now cannot be "seen", only sensed.

And maybe...maybe...help before it is too late!

[terrirt in reply to Heady]

I agree Heady, This is exactly what Ive been thinking. My husband had a temper when we met. But nothing that was frightening. But 20 years into our marriage he got really bad. When our girls were teenagers and like Greenbee, he felt like he did not have control of matters and they were getting older and wanting to do more of their own thing. I tried to get him to go to counseling but he wouldn't. This went on for ten years. Thought I was gonna have to leave him. Then he started with the balance issues and his temper gradually left. He is very calm now. I wish they would look into this too!! It's sooooo odvious!!!!

Terri

[carolinesimmons in reply to Heady]

My husband's PSP was set off by a "traumatic" event. His elective hip surgery, anesthesia, and subsequent gall bladder infection. That was in early November. PSP diagnosed in March. In between, he could not swallow nor walk nor speak appropriately. Spent 6 weeks in inpatient rehab, got a feeding tube, took lots of speech therapy and came home a very impaired man. Those in the know have blamed the anesthesia, but it was the gall bladder infection that put him in ICU on a ventilator. All I can say is that he went in to surgery a vigorous man and came out severely handi-capped.

He recently died of heart problems, a merciful death as he was a great mind trapped in a useless body.

Caroline

[jillannf6]

i ha dnot thought of the `psp` occurring years b4 dxs i must say

i need to ask my friends about the and if i have changed much in the last 30 yrs or so

lol jill

[Greenbee]

As I read comments from others, I notice that most PSP sufferers are noted as sweet, caring people before PSP. I have always looked for those who were more like my husband. Ron has always had a quick, unreasonable, out of control temper. Even when we were young, I used to tell him that he must have a brain tumor. We went through counseling many times. He was diagnosed with a personality disorder. He started falling when he was close to sixty and the PSP diagnosis came in April of 2011. I really believe that something has been wrong with him since birth.

[Heady in reply to Greenbee]

Hi Greenbee, the last word I world describe my husband is sweet!!! He could be caring, when it suited him. He too, was very quick to lose his temper and be out of control. I called it his two year temper tantrum!

When I first got to know him, some 24 years ago, it wasn't too bad, just thought, that was his nature. But certainly in the the last 10 years, it got worse and worse. Always when he couldn't control something. I spent all my time trying to minimises the times and places he couldn't control. Obviously, now looking back, that was exactly the right thing to do, as he was losing control and unable to cope with things and not knowing why! Must have been very frightening for him.

Now, he hasn't lost his temper for three years, since he had a stroke. It's the dreaded apathy we now have to contend with. Not sure which is worse. Least with the temper tantrums, there was life in him, but the spark or electricity in him has gone. I miss that so much!

Lots of love

Heady

[satoristar in reply to Heady]

Heady, again...my experiences with my husband mirror exactly those of yours and of Greenbee's.

[LynnO in reply to Heady]

This is so interesting to read. My husband has always had a very short "fuse", since I've know him at 20 years old. He always had to be in control...work, home, kids, or he just didn't know what to do. It would seem that sometimes clothes on the laundry room floor would set him off. If the kids were 2 minutes late coming home he would lose it. when things were under control he was great. It never seemed natural to me, it always came and went quickly. I'm now wondering too, if that could have been the beginning. His temperament is more even now, though he does have times where he just yells at me for no reason, thankfully that's getting less and less. There REALLY needs to be a study done on people who are thought to have PSP, and other types of this disease, while they are going through the symptoms. The opportunity to talk with the sufferer and the caregiver would be enormous!

LynnO

[jimandsharynp in reply to LynnO]

I totally agree!

[satoristar in reply to Greenbee]

Greenbee, what you have described, as I commented to Heady, is exactly what I experienced with my husband as well. And, I cannot emphasize enough with your last sentence. For those whose PSP is conjoined with frontal cortex cognitive behavioral impairments, their neurological paradigm is pernicious and insidious.

[Greenbee]

Heady and Satoristar

Thank you for your comments. I am often sad for the good times we missed through the years due to his unexpected outbursts of anger.

Greenbee

[Hidden]

I have been wondering how long my husband has had PSP. He was diagnosed in November 2011 but as early as 2000 he was having eye problems and had cataract surgery on both eyes. After that he became obsessive about some things and had a few bad falls, plus personality changes before he was diagnosed. He has just gotten over a UTI and now has a terrible cough that won't go away. Seems to be going down hill a lot faster with balance problems and all. Not sure if anyone has any advice - just very frustrated. We saw our oldest daughter waste away from cancer in 2011 and now I have to watch my husband waste away. - Nana-j

[Heady in reply to Hidden]

Oh Nana-j, how awful! My thoughts are with you!

Lots of love

Heady

[Hidden in reply to Heady]

Thanks so much. Nana-j

[Heady]

Hi All,

Reading all the above comments, just makes me want scream, kick and do lots of nasty things to the very people that are meant to be helping us!

Where are all the above symptoms in any of the literature that you have read? Where are the doctors, nurses, etc., explaining any of this to us? Do any of them even know about it? Don't think I need to answer what I think!!!

It all goes back to Jimbo's question, what is the incubation of PSP? I think from the above, it's obviously, none. Yes, they were all born with it and the medical profession are treating it like an old person's condition and we all know what that means, zero help!!!

(Sorry, didn't sleep well last night, so tired and cranky!!!)

Lots of love

Heady

[carolinesimmons]

Hi Jimbo,

So nice to keep hearing from you. In hindsight, Bill certainly had symptoms long before his diagnosis. He retired at 60 which was very unusual for him. Looking back, he must have begun to doubt his abilities - and since lives were at stake, he quit working. At home, he began to have fears about his table saw and would not use it. Although he had spent his life in construction and was a fantastic remodeler, he just became afraid of some of his tools.

He also began to stumble about that same time. He had a knee replacement and a hip replacement so maybe the stumbling was real, but again, in hindsight, there was probably some PSP in there, too. I expect the incubation period may be noticeable to the patient long before it becomes evident to the spouse. They get really good at disguising any shortcomings - as I do with my aging. We get grandchildren to "fill the birdfeeders" and "take out the trash" and so forth. All to fool the family and others.

Hope you are doing well, Caroline