Many causes?: From the posts on here, I... - PSP Association

PSP Association

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Many causes?

17 Replies

From the posts on here, I think it is safe to say that PSP and CBD and many related neurological conditions have a variety of ‘triggers.’ And, as such, are often unavoidable. However, there does seem to a some link with alcohol consumption. Clearly we need some proper research into such rare diseases, as merely attributing it to any choices/circumstances without data is not helpful. I suspect that if more people got it, funding would be found to determine any root causes. Till then, it’s all merely guesswork, sadly.

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17 Replies
Snaggy profile image
Snaggy

My mother has PSP, probably had 2 wines all her life.

Julieandrog profile image
Julieandrog

Probably disagree with that one. We know psp is male dominated my odd theory particularly with my husband ,who played into his 40's ,is like parkinson's it could be linked with head trauma from contact sports such as football and rugby. Constant heading balls and crashing of heads etc, particularly in the past when the balls were leather wet and heavy! Strict guidance now with kids playing re helmets, time out when incidents occur and balls now lightweight, due to the high incidence of dementia and parkinson's in these older sportsmen.

Just a theory, prime examole mohammed ali.

JA10 profile image
JA10

My Mum doesn't fit into any of those ideas, female obviously, no head trauma that she knows of and drank moderately at most.

It would be great if there was more research, and she has helped with some over the duration of her condition developing. I suspect that there is probably many triggers and you need a multiple of them for it to happen.

NannaB profile image
NannaB

My husband rarely drank alcohol. There maybe many causes. There have been ‘conversations’ in the past between members of this group trying to find a common link. From memory several folk who had worked in mines had PSP, but most people in the group had never worked in a mine. My husband’s neurologist said studies have been done but at that time no common link had been found. Studies to find a link are still being done around the world. I personally think it was to do with my husband suffering from ulcerative colitis since 1977. He had 4 stays in hospital where he was on drips as his body was dangerously short of nutrients unable to be absorbed as the whole of his large bowel was ulcerated. If the rest of his body was affected then presumably his brain was also starved of essential nutrients. I thought this soon after diagnosis and have since read that some scientists believe it could be to do with an infection or virus attacking the lower bowel. I expect, however, that most people with PSP have never had a bowel infection or colitis. Like other medical conditions, there are probably many causes but it would be better for everyone if there was one cause we could all avoid in the future.

XxxX

JA10 profile image
JA10 in reply to NannaB

My Mum also has colitis, was diagnosed with that nearly 25 years ago. At the time her consultant said it had been probably held at bay for many years by smoking, which she had given up some months before, to be healthier! Being very ill with that before diagnosis, was probably the only trauma she had had until the PSP falls began.

Heady profile image
Heady

Like NannaB has said, this thread has popped up time and time again. Not one has had the rest of saying , “Yes that was my loved one”. My personally theory is, they were born with it. So perhaps it’s a diet thing with the mother, or conditions at the time. My husband was conceived during the war, bad diet? Father working in war factory? Who knows?

All I do know is it an evil, evil disease and we must all keep coming up with these theories, one might trigger a thought in a researcher, if they bother to read this site. Money is poured into looking for the answers to PSP, Parkinson’s, Alzheimer’s and others, they keep going from different angles of these diseases, hoping an answer might be found in the middle. They will discover it one day and it could come from something one of us has written here. We know it won’t help our loved ones, but we owe it to the future generation of PSP sufferers, to keep writing our pennies worth of ideas.

Sending big hug and much love

Lots of love

Anne

wear1947 profile image
wear1947 in reply to Heady

Dear Ane, I agree totally with you. There are a genetic predisposition and external estimuly during life. I will add exposure to Agro-chemicals.

Finally Alzheimer, CBD, Parkinson's, PSP, etc. all have similar clinical evidence but they have not the same or unique origin.

Take care and big hug for all the folks there. In this difficult times

Elena

It would (or should l write WILL) be amazing to find an answer to these puzzles. Mom had PSP & drank coffee... never alcohol. I have always thought the answers are hiding in the brain (probably in plain sight). Sending you & mom hugs... Granni B

Hi Marysmother!

As if it was an interesting fact.

My wife has had a PSP for 8 years. She has always rejected alcohol and tobacco.

Hugs and luck.

Luis

Aprilfool20 profile image
Aprilfool20

I have been on research projects. Could be environmental factors,could be dietary, could even have been born with it or a forgotten head trauma . No one knows. I have CBD but that cannot be positively confimed till I die and they do an autopsy on my brain. Even the numerous scans cannot say definitely. I had a heart attack in 2015, 2 years before diagnosis. So perhaps it was the drugs they had to give me that triggered it. Maybe my brain was starved of oxygen. I was ok after rehab for my heart, came on about 6 months later. Either way it’s completely changed my life. Not the retirement I was hoping for!Jayne

Thanks for your replies! My mother suffered from migraines all her life . A link there? Looking at all comments it seems that lots of factors can lead to it - many of which impact on the circulation and blood supply to the brain. We may never have the answer, but hopefully one day some kind of treatment!

Jkhakh2 profile image
Jkhakh2

My fingers are crossed for a way to stop tau tangles someday.

Marilyn_cbd12 profile image
Marilyn_cbd12

Hello. While I think it would be important to begin studying the PSP/CBD/MSA population much more broadly and intensely, I have to report in that my husband, a CBD patient for 14 years, has never been had much alcohol. Has always preferred fruit juice-

Marilyn

AJK2001 profile image
AJK2001

Sorry but I think you are barking up the wrong tree. If they do find a reason for the tau proteins accumulating in the brain, it is most likely to be due to a variety of environmental & genetic factors but not alcohol.

wear1947 profile image
wear1947 in reply to AJK2001

Totally agree

Hugs

Elena

ncgardener799 profile image
ncgardener799

My husband does not drink, non smoker, physically active his whole life, no other health problems. PSP for 5 years, very slow progression so far-but decline is apparent. No answers to this disease.

racinlady profile image
racinlady

My husband never drank nor smoked. He was exposed to chemicals in his work as a mechanic. His father had Alzheimer's.. Possible cause environmental or genetic?

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