I would like to know what other people's experiences are in terms of what they think caused their PSP

[LyndaEllis]

I was emotionally abused as a child and went through a lot with my first husband who committed suicide. My second husband causes me a lot of stress because he yells at me a lot. Could this kind of high stress have caused PSP? I also stopped taking hormone creams a few years ago and wonder if this contributed. What are other people's thoughts on the cause of their PSP?

[Jane2212]

Hi, my mom always cited the cause of her PSP as three deaths of family/friends, me leaving home and her cat getting run over all in a three month space of time. She was adamant about this. Also her thyroid tablets changed at the same time, the chemist said it was the same thing but she was convinced the new ones were a cheap version.

Jane

X

[jimandsharynp]

PSP has been diagnosed since the 1960s and yet there is no known cause or causes. I wish it was that simple to know the cause but that may be years away. Some of the patients have been married for years when one has PSP. During this time they have eaten the same foods, gone the same places, etc. My personal opinion is that it's environmental and for some reason some people are open to it, others not.

Jimbo

[LeighaAnne]

My dad died from psp on June 1st he was an auto body man. Painted cars for a living. We think it was all the chemicals and fumes.

[cawbird59]

I have read that it could be caused from tramatic head trama... my mother was in a terrible car accident when she was in her 20's, head went through the windshield and then was hit in the eye with a baseball, knocking her to the ground and deeply cutting the skin around her eye. She has had PSP for 7 or 8 years now.

[Hidden in reply to cawbird59]

Hello cawbird59,

I've been saying this for the longest time,

my personal opinion is that for some people

head/neck trauma is a trigger for PSP and Parkinson's and

why younger people are now being diagnosed with these conditions

in their forties and fifties (pd). Chemical, emotional and physical stress is also a

major factor on the nervous system.

Also it is of my opinion that its the slow buildup of neurotoxins and heavy metals

in the brain and nervous system that is the stressor on the whole human system.

Like i said its Just a personal view.

[blux in reply to Hidden]

Makes a ton of sense have thought about my personal neck and head trauma and exposure to chemicals & mold as a kid. I'm just 52

And twas in ttype A work alcoholic

[ultramodern]

Dear Lindaellis.I do believe to-days researchers are digging deep into the DNA side....something wonky with one of our chromosomes possibly triggers it.

But in all honesty ,no-one knows. in a previous forum a lot of friends in our PSP/CBD circle mentioned blows to the head of one kind or another. I even mentioned the two traumatic falls of my wife plus an emotional shock connected to family.

After all, the TAU proteins that go ballistic and start eating the nerve endings are in the head or neck so that's logical, isn't it?

I've often asked friends, some with terminal illnesses "What do YOU think is the cause of your illness'". After all

its our disease in our body and' feelings are facts', so if that's what you think ,so be it Linda.

But remember there are tens of thousands of people out there who've gone thru' the same bad treatment as you've been thru' in your life. And I ask ,have they or will they all contract PSP/CBD?Doubtful.

The jury is still out on this one so what causes it is up for grabs.

With you in mind,best, brian

[jaylew1]

Hi. Linda E

I was asked this question today by my neuro.. and I said I didn't know, but reading what you have just written has made me think twice about it. ...i was abused as a child both mentally an physically, and i was with my husband of 30 years so maybe there is a connection to stress ??

kind regards. Jaylew x

[MOMBCD1]

I am sorry to hear that you have psp, don't know what causes it though I would have avoided it

I. too have psp and was diagnosed 3 years ago in december

[manitoba]

Lynda, a few years back when my wife's balance was getting worse we actually went to a Naturopath as a last resort. The Naturopath indicated she had a high level of toxins in her system (I think it had to do with metals of some kind. In any event she actually did some detoxing which didn't do any good and when we told the Nuerologist about this he seemed a little upset. I don't think they have much use for Naturopaths.

[Hidden]

Dear Lynda and All,

My father's PSP did not start to show until he was nearly 90 years old. He was the son of a blacksmith and worked in the blacksmith's shop wen he was young and qualified as such. He was a very practical man and in later years set up his own little smithy, so he has been exposed to metal pollution quite a bit. However, he also farmed and so was exposed to chemicals that way, but not heavily, I would say. He never smoked and drank very little. He was very strong and active. My mother was quite difficult to live with and developed Altzheimer's and he supported her for many years but he had a really placid and accepting personality so, yes, he had stress but dealt with it well. His younger brother died at about 79 years of age, I never saw him when he was ill but from what his wife told me it sounded very much like a PSP type disease. Stress- wise, people of Dad's age did go through the 2nd World War and that did affect Dad; also his father died young and he being the eldest son had young siblings to worry and care about, So he had his fair share of stress. and pollution, and of course, I was not exactly 'an angel' as a youngster, so caused him worry!

It seems that no one knows for sure what is the cause of PSP yet. There is some involvement with cell metabolism, the mitochondria in the nucleus of the brain cells start to over produce a bad substance. Could be like when cancer cells go mad or something of this sort. We just do not know.

It is probably just our bodies wearing out in this form, wear and tear from life and our own life's experiences. My father always ate very well indeed. Maybe he ate too much meat! Perhaps the earth in which he grew his vegetables was polluted! He had a wonderful veggie garden. Who knows! We can only but guess at the moment. Could be a genetically driven disease controlled by our chromosomes!

Yes, it is one big unsolved mystery, as is the case for many of these neuro-degenerative diseases.

[Hidden]

Hi my husband died just over two years ago with PSP but before his symptoms started he was in a car accident and banged his head badly and also shortly after developed a very bad ear infection I often wondered did any of these contribute to this awful psp

[laroux]

It's so hard not to speculate on the origin of PSP. I think it is possible the chemicals sprayed from planes over the crops may be to blame for my husbands psp, or maybe all the aluminumn pipe he cut and handled...then again, he fell from a trailer deck while unloading it and injured his back and neck. Was the fall an early sign of PSP or was the injury a trigger? He tends to blame all the medication he was prescribed for the back and neck pain. I think PSP may be caused by several different factors, and possibly even a combination of factors. At any rate, regardless of the cause, it is what it is...sigh!

Joan

[shasha]

it is funny that you mention hormone creams as i too stopped using them and HRT prior to getting my first symptoms .... IN Fact i thiught it was the stopping of the HRT WHICH CAUSED THE STIFFNESS I STARTED TO FEEL - IN FACT I WENT BACK ONTO THE HRT BUT AT A REDUCED DOSAGE WHICH DID NOT HELP MUCH I SEEM TO REMEMBER - THEN I HAD A VERY BAD FALL DOWNSTAIRS AND CRACKED A VERTEBRAE THAT WAS IN 2007 AND I CAME TI LIVE IN FRANCE IN AUGUST 2008 I WAS STIFFENING UP ALL THE TIME AND THEN I STARTED TO LOSE MY BALANCE BUT NOT UNTILL 2010 WAS I DXD WITH PARKINSONS WHICH WAS CHANGED TO PSP IN NOVEMBER 2012

[bendyneck]

This is an interesting thread! My father died of PSP back in 2000 and I have recently been diagnosed with a rare condition called EDS-H. I am convinced that my father also had EDS-H throughout his life but that it was never diagnosed. EDS-H is a genetic condition that affects the way your collagen is made, resulting in lax tissues. My question has always been whether the two conditions could be linked? One of the odd things about EDS-H is that local anaesthetic does not work, something to do with the anaesthetic not staying in the tissues. EDS-H also affects the way we deal with stress and makes us more prone to injury, due to lax joints.

Many of you mention emotional trauma, head/neck injury and exposure to metals/chemicals. My question is whether EDS-H could make an individual predisposed to PSP? I am thinking perhaps having lax tissues creates a sensitivity to chemical exposure getting into the brain, or creates an unusual stress response within the brain. How many of you with a diagnosis of PSP have any degree of hypermobility as per the Beigton criteria

hypermobility.org/help-advi...

or have stretchy skin, easy bruising, unusual scarring

hypermobility.org/help-advi...

Would be really interested to hear your replies.

[Hidden in reply to bendyneck]

Hi bendyneck

A friend's grandaughter has Ehlers Danlos Syndrome (hypermobility type -the commonest and less severe type). As you'll know it has many forms, is genetic, and involves a defect in collagen and connective tissue synthesis and structure. It's rarer than PSP.

I am not a doctor, but I cannot see any connection with this disease and PSP. The pathology of each disease is very different. I have just written a short post on "Cause of PSP - reflections". It explains a bit about PSP and neurological diseases.

Sorry cannot be more helpful.

Take care!

[bendyneck in reply to Hidden]

Thanks for your comment Strelley, and your post on "Cause of PSP-reflections" is very interesting and thorough. I know PSP and EDS-H are completely different diseases and was not suggesting that they are the same thing, but I was wondering whether having lax and fragile tissues could have an influence on the physiology of the brain, and how it reacts to these Toxic Tau Proteins, or its ability to eliminate them. It would just be really interesting to take a straw poll on how many diagnosed with PSP have had some degree of hypermobility or even just stretchy skin? There are many many people out there who have some subtype of EDS who have not been diagnosed, either because they are not symptomatic or because they have been misdiagnosed with some other condition. I was not diagnosed until I was 48 despite having symptoms all my life.

[LyndaEllis]

Thank you all for your thoughtful comments. They have been helpful food for thought.

[rangena]

My father has PSP; he also suffers from Hashimoto's Autoimmune Disorder. It is caused by sensitivities to gluten and casein (dairy). It causes the body to create antibodies that attack the thyroid and brain, maybe other organs too. The first sign is low thyroid function and most doctors just give you more hormones. This goes on and your body becomes very inflamed, most people get so used to it, they don't feel any different. As the lining of the brain becomes inflamed and erodes, viruses can get in and attack the brain. Depending on where it attacks, the neurological problems vary - that's when they name the disease, Alzheimer's, Parkinson's, PSP, Dementia. That's how I believe my father got it. In theory, I guess anything can erode the lining of the brain and allow viruses to get in - toxins, stress, food sensitivities, etc. And if you are genetically pre-disposed to getting one of these, bingo.