thinking back

Just lately I have I have been thinking a lot about what could possibly have triggered my wife`s PSP, if anything, and a thought came to mind that when my wife was first prescribed blood pressure tablets she started to get terrible headache so asked to have one of them changed ,which the doctor was reluctant to do ,saying that this was not the cause as there as never been a report of this kind of adverse affect , but being persistent he agreed, the headache did gradually ease. But I wandered if the damage could already have been done. This could probably be rubbish but just a thought. Does it trigger a thought with anyone else, or is it just me grasping at straws.

20 Replies

  • We all grasp at straws, I do it all the time and so does Keith, sadly I don't think anyone knows what triggers PSP, I so wish there was an answer but unfortunately at the minute no one knows, thinking of you.....

    Pat xx

  • Bless you

    Dad continually wonders why he has Psp and has he done something wrong?, bless him!

    To be honest I think it's pure bad luck, very very bad luck!


  • Nothing read about blood pressure medicine;. My husband has never taken nor had high blood pressure. you might take that drug to the internet and see what you come up with....

  • I think it is always worth mentioning to the GP any thoughts like this you may have. 43 years ago we were trying for a second child. The first was planned for two years after we got married and he was born the day before our second wedding anniversary. After two years with no pregnancy I asked the GP if the mesalazine my husband was taking for ulcerative colitis could interfere with sperm production as his urine changed colour and the sperm production was in the same area down below. He smiled as if to say, you idiot, and then looked it up. No, there was no mention of it in his little book.

    As C had no current symptoms of UC, he stopped taking the tablets and 3 months later I was pregnant. Sadly only for 20 weeks but 4 months after the miscarriage I was pregnant again and number two was born healthy. 15 months later I was pregnant again with healthy number 3.

    I thought it was a coincidence that I was pregnant after C stopped taking the tablets and once he started taking them again, no more babies.....probably due to the TWO vacectomies he had though.

    Years later, after he had been back on the tablets, I read the leaflet again. The last very rare side effect.....Reversible decrease in semen production. I've always wondered if my doctor reported what I had said to him. He knew C had stopped taking the tablets and warned about a recurrence of UC. He was my doctor throughout my last two pregnancies. He had retired before I re read the leaflet.

    So now I report any thoughts I have, just in case.


  • interesting: I wonder how many other psp sufferers have had uc

    I was diagnosed with atypical Parkinson's about 9 years ago after years (15) of taking salazopyRine my uc has been quiet for the past 3 years now and i only take 2x 800 mg Asacol per day to keep the uc under control sadly nothing helps for the psp.

  • Long may you stay UC free. My husband suffered for the whole of 2015, brought on in December 2014 by antibiotics taken for a UTI.

    Best wishes.


  • I heard about how in healthy brains the Tau is natural cleaned away whilst we sleep ? I know after a family tragedy my dad has had terrible sleeping habits for a good few years , and wonder if this contributed ?

  • Yes, of course you are grasping at straws. We all do. But one day, one day, one of those straws will be the answer. My personal one, is S was born with it!!!!

    Lots of love


  • George had a really bad stomach infection he had to go into hospital, he was in there for 4-5 days, I always wonder if it was something from the infection, he was never sick before that, never went to the doctors, makes me think? Yvonne xxxxxx

  • Brian was a bus/coach driver for years he also spent time as an inspecter so i often think was it the deasel fumes that triggered it.

    He had a cast iron stomach nothing seemed to upset his constitution but he did have a anuel fistula many years ago.

    Or could it of been the antidepressants that he was prescribed for anxiety when he was about 17. Not the same sort that we have these days. Janexx

  • My husband was a locomotive engineer on both freight and passenger trains for 35 years...I, too wondered about the diesel fuel. He also had a bad fall from a second story deck landing on a paved surface many years ago. I also wondered if a bad blow to the head might be the cause.

  • I have read that you can have a predisposition to develop PSP (as with lots of diseases) and something triggered its development. Ben has Vitamin B12 defiancy ( only diagnosed 2 yrs ago) and because B12 helps to keep nerves healthy I wonder if this may have something to do with him getting PSP.

    Kate x

  • Hi Kate,

    P too has Vitamin B12 deficiency and the regular injections were stopped for 10 years by the previous GP (for no good reason, because I kept asking). I am sure that contributes to PSP problems but I`m not sure if it is the cause.

    B12 apparently keeps nerve endings and brain functions in good order. As a supplement it cannot be ingested it has to be injected regularly.


  • Ben has 3 monthly injections but not sure how long he had the deficiency before he was diagnosed.


  • My husband was on blood pressure tablets. He has come off them now as apparently, it can fall with PSP and his is normal. (Personally, I think it has fallen as he doesn't partake of the same food and drink that he used to or the amount.).

  • I believe pernicious anemia (B12) deficiency started my Joe on his CBD journey. He now gets a shot every 2 weeks and 5,000 mg sublingual methyl daily!

  • This is the only team of researchers to have replicated plaques and tangles in the lab.

    They have now linked BMAA toxicity with PD, AD, PSP, Picks disease, ALS and more. All of the samples tested positive for BMAA. The PSP sample was taken from the cuts of hair a woman had saved from throughout her illness. The tests showed how the BMAA lvls had increased as the disease progressed. All the samples from ppl with one of these diseases tested positive, all the samples from ppl who did not have one of these diseases showed no trace of BMAA.

    BMAA is a toxin produced by some types of blue/green algae. 12/12 lochs, lakes and reservoirs in the uk tested positive for BMAA. So it's in the food chain.

    The theory is the BMAA replaces serine in the amino acid chain as it is formed. Serine is used to make membranes. They are trialing l-serine on ALS sufferers but as of yet there is no evidence this treatment will work. They are on phase two of the trials.

    I am waiting for an update from my local MSP about BMAA in the water supply and whether or not our water treatment methods remove the toxin. But even if these methods are sound, the animals we consume probably all have contaminated water to drink.

    We have been genetically tested and no-one in my family has the markers for Alzheimers or parkinsons.

    I think I read they found oysters/shell fish contained the most concentrated amounts of BMAA.

  • For 30 years my husband commuted from Long Island to NYC through the tunnel. I often wonder if the fumes in that tunnel contributed to his Parkinson's. No one in his background had Alzheimer's or Parkinson's. However, I do think you have to be predisposed to the illness.

  • My husband's family on his mother's side has a long history of autoimmune problems including chrone's disease, ulcerative colitis, Hodgkin's disease, ITP, and otosclerosis. I feel sure that there is an autoimmune link with PSP.


  • Oh I think that thought goes threw all of us trying to figure out what caused the PSP disease in our loved ones, you can make yourself crazy just thinking what??? I really think you are born with it to, my brother was in Vietnam spaying Agent Orange so maybe toxins, who knows one thing tho the Veterens added that to there disability list. So guess it's a waiting game. We just all pray they find a cure. Nettie

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