I've been told by 3 different neurologists that no one knows the cause of PSP -- so I am putting this out there:
My husband was on prednisone on and off for 20 years for severe inflammatory small bowel disease(Crohns) - 6 small bowel resections and with that a Dilaudid addiction that took him to a detox and rehab center where he was given Suboxene. In addition he's been on all the biologic meds they use for crohns; humira, metrotexate, remicade, you name it!
My feeling is that all these toxins have affected his brain. Hoping for some feedback.
Many thanks.
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Lacey23
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My son, who recently died, May 4, 2017 of PSP, NEVER had any illnesses of any kind. His symptoms started March of 2014 with DOUBLE VISION and SLURRED SPEECH.
I agree, 100% genetic or mutant cell, unless it turns out to be a virus. My son had just turned 55 years old on March 30th, died on May 4th. His entire life he had no health issues/problems/challenges. He took care of himself, no drugs, drinking, smoking, no coffee or tea, etc.
My father at around 55 came down with Double vision and Dystonia of the neck....symptoms that my son had. The difference is that my dad lived to the ripe age of 92.
My son's father (we have been divorced since 1974) died of Picks disease (PhD in Sociology from UCLA).
I think vulnerability for my son was contributed on both sides his tree.
The brain makes too much of a protien called Tau, Scientists claim they dont know why though.But the overmaking of this protien is what Causes thier disabilities.
My husband drank heavily in his 20s, smoked cannabis for 20 years and had taken anti depressants for 46 years, I have always believed this had something to do with it. Before he was diagnosed with PSP the neurologist actually blamed alcohol for his early symptoms.
Who knows, what we do know is that we are living with PSP now, and that's enough.
We now know that cannabis helps the immune system. In fact, the immune system in humans is activated by the cannabinoids in breast milk. Everything you were told about cannabis was a lie.
I have always said, and told our GP that I thought my husband's PSP may have been connected to his years of suffering with ulcerative colitis. He was on prednisolone for years. I didn't think it was the medication but the illness itself. He had 4 blood transfusions over the years due to severe lack of vitamins, minerals etc as his bowel was so affected that nutrients weren't being absorbed. If this lack affected his body I presume it affected his brain as well. I also read a report some time ago, suggesting it may be a virus absorbed through the bowel. I do, however, think there may be many causes, lifestyle, diet, environment. Who knows? I hope someone finds out soon.
Yes, my husband has had a similar problems with lack of absorption of vitamins and nutrients. His b12 levels were practically non existent right before being diagnosed with PSP. Thanks.
On one occasion C was dangerously short of potassium. I took some bananas into hospital and the doctor said I'd have to bring him a banana the size of a double decker bus before he had enough. It did make us smile.
I agree about B12 deficiency. My Joe was never sick except for colds but had undiagnosed Pernicious Anemia. We believe this led him to CBD. His symptoms have remained stable with the exception of failing speech. He takes B12 shots twice a month and injests 5,000 mg B12 daily and 1600 mg of fish oil. He does not recognize me for over two years. So much to learn. So little time.
Most of us never question the medication perscribed by our doctors,.. all though my husband has had several illnesses , three of them serious and took a while to recover from..(.He has been on medication for a heart condition since 1992..) b.. He had an injection against shingles, three years ago , since then I think things changed,. and I believe for him this seemed to be the start of PSP , Thats not to say other factors on pervious illnesses should be ruled out.. ( I have told my doctors I do not want to have a shingles injection , I'm not taking any chances).....Brenda
My theory is that PSP has a link with autoimmune diseases, the group to which Crohns, IBS, ulcerative colitis, myocarditis, MS etc. belong. There is a strong history of autoimmune problems in my husband's mother's family going back several generations. Our daughter suffers from TTP, otosclerosis, joint inflammation and skin problems. His mother, brother and niece also had or have Crohns, ulcerative colitis, Hodgkins Lymphoma and other problems.
There is obviously a genetic susceptibility to these difficulties but we are no nearer knowing the trigger. Although a lot of problems are present in the family, my husband himself did not suffer from any of them before being diagnosed with PSP. In fact he was an extremely fit person who had not taken any long term medication.
I'm new to this and don't know if this will get to you. But do you know if it also effects the iron deficiency as well. Everything I'm reading sounds like this mystery we have going on with my daughter of 14 years old and they have diagnosed her with POTS. But it's sounds more like this. Well sounds isnt the word her body and tests are this exactly. Except for the iron deficiency which she has none down to 2% and blood cells changing shapes now. And they are doing nothing but watching her waste away to nothing. Has lost 45 pounds in two months .
She is now down to 90 lbs as of this morning (as she came to me and told me looking skin and bones) 5'5" . She has been diagnosed with POTS her blood pressure doesn't stabilize her blood doesn't know how to go from her legs to her heart and head doesn't make enough of it is how it was explained to me. She faints ,headaches ,weak ,I guess I need to start from the beginning. Almost three years ago she went from a straight A fun loving kid to us being hit by a drink driver and her getting a head injury neck injury . Before this she had a heart mystery problem cardiologist tests and all revealed nothing, after accident she started sleeping 20 hours a day up 4 couldn't function room turned into a pig pen became angry violent total different person . Lossing weight then she had surgery on her tonsils at 12 lump behind one she was near death from it and ended up in hospital after the surgery a month later fainted at doctors from a blood draw air lifted to all children's and diagnosed with POTS. Here today we are struggling with 90 lbs of failing school angry teen sleeps can't control life tearing life apart meds that don't work steroids now astronaut meds brand new not holding breath and a iron deficiency at 2% I'm I suppose to wait til she just doesn't wake up one morning and a biopsy! So I turning to here because I feel like I find more knowledge and strength and guidance ideas possible doctor thru people who know understand and are there live it! Please be kind from a loving mother who is drowning.
I guess I forgot dizzy, nausea,throwing up, period all the time for three years now (I mean every day stops for two or three the starts again )they put her on birth control hasn't really made much of a difference did blood work and it came back abnormal but hasn't addressed that yet . She has become a very picky eater (I think it's because her body tells her what it needs is driving her to those foods she will literally eat asparagus all day long for days in a row bags of corn salty and garlic food we go thru massive water (we have been told water and salty snacks for her condition and of course it works when she gets faint and pale) oh the worst I forgot mouth sores she has these horrible mouth sores that cover the inside of her mouth throat and stomach she uses leukemia mouth wash for them. They blister up look like Cauliflower's exploded in her mouth extremely painful bleed can't drink or eat cries thru it her lymph nodes swell and fevers come before they appear. And the anger. This happens monthly . I know this has to be auto immune I'm dealing with (at least I am thinking it just don't know where to look)there are so many and the doctors are just looking at me saying it's tie to go back to infectious disease and immunology. Ha that was two weeks ago no phone calls from them. Ad she has lost ten more pounds two months and she has gone from 129 to 90 pounds without trying and this girl can eat! I own a bakery and we are self made chefs grill masters here fresh fish (I mean caught from our back yard ocean to the table with in a hour fresh!)and hand picked beef Kobe for her beloved tacos we have a garden she used to love to tend (doesn't have the energy any more) she loves Pico could eat it by the bowl full. So the weight loss is beyond concerning. She is getting nothing from what she is eating.
Thank you for listening reading so far down and so much it's been years and a lot to say. And hard to explain I short sentence I'm new to this . So any advise is so welcomed! I'm just happy I was able to download and then find again and log back in the struggle is real! (Dinosaur)
The problem appears to be that we are living longer and so more of these chronic illnesses are coming to light because we live long enough to get them.
However some folk get them when younger...
We are exposed to huge levels of toxins and chemical additives in our food and toxins in environment.
I really don't know.
Waiving to you
Kevin
XX
My dad has hardly ever been ill, even today he just takes 2 vitamins daily. He was a social drinker and quit smoking 30+ yrs ago. He was diagnosed with prostate cancer, which is in remission, while trying to discover the cause of his falls and shuffling gait. Eventually it was determined he has CBD.
My husband is neither a smoker nor an alcoholic . He was a very hard worker and had no proper sleep during nights due to emergency surgeries during nights and also very little rest during day time. He is an adult on set diabetic and essential hypertensive for the past twenty years for which he is using medicines and they are under control. There is no history of neurological disease in his family or immediate relatives. Why the tau protein gets deposited in that particular area has to be identified and then only the cure can be identified . Until then everything is hypothesis only.
I understand that PSP has a genetic link, although nothing at all similar in my husbands family medical history.
Their is a substance called TAU in the brain, basically it lubricates the axons and neurons responsible for passing messages in our brain, this TAU becomes sticky and this becomes the product of PSP.
However, my husband has always suffered with Asthma and Anaphalaxis (about one attack every 7 years}!! He has always been prone to allergies.
Our neurologist said that it was a flaw in a gene (that makes the Tau protein), but that it is not genetically hereditary. Genes break and go worng as we grow older.
Same as Pzagy MIL, my wife was on an assortment of blood pressure tablets for twenty years which I have always blamed for the reason of her CBD, as I have stated on this site before.
I stopped her BP medication and now she is not on any manmade (sorry person-made) chemical intake; just organic wholesome homemade food.
Des was not a smoker,a very moderate drinker, no bowel problems.I sometimes think about his short career in the army when he was in their boxing team and want to hang the blame there.
The Queen Square Brain bank for neurological disorders are researching PSP and need both healthy and damaged brain tissues.You can make your wishes known to them and on death they make the arrangements .Des and I were both listed with them. shortly before Des passed I phoned their 24hour line and they already had the undertakers details and from there I had nothing to do apart from the final phone call.So hope his cells might help find the cause or the cure.
There is a web site ion.ucl.ac.uk which will explain much better than I can.
Des's body was soon back at the undertakers and just a small neat scar and perhaps a slight smile that his wishes were observed?
My dad was a heavy smoker and drinker. He also worked in a factory and had several repeated bouts of cellulitis, with flouroquinolone antibiotics, which we now know cross the blood brain barrier. He also has a gene which causes iron storage problems in 5% of the population. We know that excess iron drives inflammation. When his symptoms began, we took a stool sample for analysis and found severe dysbiosis. So he had lots of factors that could influence protein behaviour in the brain, but no genetic susceptibility. All so interesting.
My husband had cellulitis some years after being diagnosed with Parkinson's. He was on 2 lots of antibiotics 24/7 by drip. Later, he had a knee replacement, it became infected with cellulitis and he was treated with three different kinds of strong antibiotics for several weeks , No wonder his immune system was jeopardised. His mother had Lupus, another auto- immune illness.
I wish they could find out why? We are all desperately searching for a reason. X
My Mum who has PSP also has ulcerative colitis, I am not sure which drugs she has had as she has had is for about 20 years, I will ask her though. It would be good to find out any links between those with PSP, there must be a reason the tau protein in the brain mutates. My Dad has MS so my sister and I are both concerned about also getting one of these types of condition, though Mum's neurologist said it's not hereditary.
My theory is PSP is linked to many triggers not a single one. The main triggers I believe, besides chance gene mutation, are family history/ genetics, environmental risks, drug intolerance, substance abuse. There will be other things high stress, household chemicals etc. What I believe is we need a major data gathering analysis of all neurological conditions where Tau is thought to be a cause.
My wife had high BP for her forties but was controlled and off meds 10 yr before PSP symptoms started. She did have some family history of Parkinson's Louis Bodies but in very elderly relatives (85+) nothing in her age bracket (59-66). We live in semi rural area so could be exposed to agricultural chemicals or radiation in her hospital work. Who knows other than she did get and die from PSP.
In U.K. there a silly rules that restrict Altzimer Society or Parkinson's Association charities say, funding research into anything other than Altzimers/Parkinson's when if they could research Tau in PSP their search could be narrowed to one area of brain rather than at present the whole frontal cortex which could benefit whole areas of neurological conditions. We need to get our politians to change rules to allow charities to merge their studies and share results.
Sorry about rant on research but just had run in with prospective MP who had no idea about social care or PSP and only thought of throwing more money at hospitals.
Well that's just silly Tim. They have to realize that all of these diseases have to be connected and most likely have a common thread. Thanks for educating me.
The trouble is most people including prospective MP's have never heard of PSP and CBD? I had never heard of them until my husband was told he had PSP and signs of MSA. So I had to do a lot of online reading.
I was going to have a go at them too but so far haven't seen anyone! I think it might be better to see who the MP is and then raise it as an issue that is not being addressed? Mind you I might blow up anyway? I think we need to get politicians on our side regardless of which party they represent though.
If anyone has a PSP group why not invite the MP to it after the election? If every group did that and succeeded in getting them there it would be amazing, and suddenly a whole new group of influential people would be aware of PSP?
My mother was diagnosed in 2011, after 3 years of dealing with stenosis of the spine and type 2 diabetes. I believe the disease is partially genetic. My mothers Aunt passed in 2005 with what I believe was undiagnosed PSP. Looking back her aunt had the PSP eye expression and other symptoms. My mothers older brother died of diagnosed PSP in 2014 and her younger brother has Parkinson's. That's quite a bit of neurological problems for one family.
That certainly is a lot of similar type illness in one family. Your family would be a great case study for researchers? Have you ever considered it? It would seem there is certainly a genetic problem. The strange thing is when nobody has ever had anything like it in the family. Although going back a couple of generations perhaps they did?
We actually approached her Dr. With the genetic theory. He is very open to ideas, a really good man. The strange thing is my mom's older brother who died in 2014 went to our mom's Dr. on the suggestion of my sister and I because we recognized immediately what was going on with him, something his previous Dr.'s could not see. Mom's older brother had pure PSP, my mom has been diagnosed with PSP with Parkinson's also. She responds to Sinemet, although recently her 'freeze' she was taking Sinemet for has moved from her walking to her swallowing. She can swallow, but goes through freeze periods where she is unable to move the food beyond her tongue. We are currently trying dosing changes to battle this.
My husband was a pilot and rarely took any kind of medication. He was subject to lots of chemicals in aviation fuel etc and flew at great heights, which could have led to some kind of low level oxygen deprivation.
He has also had 4 bouts of cellulitis and suffered from sleep apnoea. Ironically he no longer does! Although the neurologist told me that neither of those were factors there is a lot of current research about oxygen deprivation and degenerative neurological conditions, for example through things like sleep apnoea.
He has no family history of any neurological condition at his age as far as we know.
I guess one day we will know what causes CBD but I think it must be a mutli-faceted reason including perhaps a genetic susceptibility and then maybe sustained oxygen deprivation or infection or chemical/ environmental toxins. Who knows? It is a great idea to try to fund a tau study though.
Thanks for the post about donating brain tissue samples. I will talk with him about this later.
Rowan I was asked if my husband stopped breathing during sleep. He did but I don't recall it happening until he had PSP although he may well have done? So that would tie in with your lack of oxygen to the brain?
Interesting too that your husband was a pilot. On our 40th wedding anniversary we went to Jersey. We were about 30 minutes away from landing when I felt quite ill. I could not only smell aviation fuel but felt like I could taste it. I asked my husband if he could smell it but he said not. It is the only time I have had an experience like that and I was so glad to get off the plane! So aviation fuel coming into the cabin? There has been a lot of discussion about this but then it is always hushed up! Your husband almost certainly was exposed to this as well?
Yes - with the sleep apnoea my husband used to stop breathing for minutes at a time when he was asleep - but he definitely had this long before he developed CBD.
Interesting about the aviation fuel when you went to Jersey. I am sure that lots more information will come out about this at some point in the future. Flying is a relatively recent thing really and we don't know about all the effects of it yet.
I have had uc for about 25 years now I am now taking Asacol to control it (Quite successfully ) Before this i took salazopyrin for the first 18 years of this disease, i was diagnosed with atypical parkinsonism about 9 years ago which changed to psp about 3 years ago I just have this feeling that the years of taking the salazopyrin had some effect.It would be interesting to know if anyone else had this problem.
P was always very `sporty`, didn`t drink much, never smoked. But his Vitamin B12 levels were extremely low and I think that is where some neurological damage may have happened over the years before diagnosis.
My mother with CBD - was the picture of health from her personal efforts perspective. She exercised everyday most of her life, she ate organic unprocessed foods way before anyone had ever heard of such terms, never took any regular medication (still doesn't), and took supplements after reading extensively peer reviewed data as to efficacy. Rarely drank or smoked.
What she did have either genetically or environmentally are the following: Ehrlers-Danlos syndrome (only recently dx'd by association of other family members w/official dx's), chronic low blood pressure, extensive allergies, a mother with some sort of dementia (unidentified), a nasty fall (occued when walking her daily 5 miles - 25 years ago) that knocked her out cold with a severe bump to the head (ambulance had her to the hospital before she regained consciousness), worked with and around heavy chemicals as a print maker, artist and home builder/renovator. Has had root canals in most of her teeth (she thinks this is a possible cause).
So who knows - I do know that she believed she had severe vitamin B deficiencies, and took plenty of B vitamin supplementation.
My sister and I felt that her extensive use of any supplement or quasi self treatment may have had an impact. When she thought something might help medicinally, she would often take 10x the recommended amount. She would also take non-vetted therapies (even though she knew better based on her scientific background). She had a severe distrust of western medicine and didn't often go to Doctor's and would categorically refuse any prescribed medication - except for Prednisone which she would take when she got poison ivy (a yearly occurrence for her). She stopped a few years back though when she got worried about Prednisone and her bone health.
Interesting about your Mother's nasty bang to the head. There was a similar discussion on the MSA site recently and it was very interesting to see how many people had suffered a head injury or concussion and then gone on to suffer from MSA. So could that be something that might trigger other neurological conditions too? It sounds very possible? Most of us bang our heads when we are young and totally forget it unless it's very serious?
Certainly my husband suffered injuries to his legs due to a handgrenade being thrown at him in the Middle East he may well have been thrown into the air as a result and maybe knocked his head? He may have been unconscious too as he didn't remember too much about the aftermath. I do know they didn't expect him to live and he had a couple of operations on his legs to remove shrapnel. So was a bloiw to the head the trigger? Who knows?
It would be nice to know the cause of it but in reading stories on here for the last year everyone has different stories and there seems there is no specific commonality. I'm sure there are probably many contributing factor. But it is frustrating not knowing so that people can take preventative action.
Thanks all for responding to my post. There are so many stages of grief in dealing with this illness. I was looking to blame it on something or even on my husband with this illness, but I can see that there really isn't any one thing that I can point to. I know I have to love and care for my husband as best that I could and enjoy each day (as hard as that may be). This group is the one positive thing I look forward to each day. Hugs.
Lacey bless you. I know what you mean about looking forward to this group. We have all been there or are there. Nobody else really understands how awful it is to lose the one you love bit by bit?
These are similar to Alzherimers disease, but PSP is a very different illness.
There is growing evidence that full anaesthetics also cause these tangles in some people, but they generally recover over about fourteen days and the worst cases, I think, it is six months. This usually exhibits itself as being a little confused and forgetful.
I think there is a trigger. Charles had a bad bout of iritis and after that everything went haywire. Early exposure to toxins as well. But in good health generally.
My husband never took medication for anything. But what he did do that I wonder about was Ant poison he had a bad habit of putting his hand in bag and spread the poison on the ant hill. I read a report about toxins could be a factor ??? That's the only thing I could come up with.
My dad, who has PSP wasnt on meds didnt smoke do drugs or drink.I know that mercury is in the flu shots as a preservative VA and he had recvd 1 or more flu shots Even though hes never had the flu.He just went along with Kiaser pushing these shots because he trusted them.Im not saying thats what caused it but I do have my suspicions.Also he drank coffee everyday but used eqaul for years, that stuff is known to cause excito toxins in parts of the brain.Google the effects of sugar substitutes on the brain and you can read for your self.So Im suspicous of both .
My Daddy had no bad lifestylle habits, could count the number of times he ever drank alcohol on one hand, no drugs, lived a healthy active life, but 2 possibilities I've heard of but that I didn't see specifically in these replies, and that would apply to my Dad are 1- he worked with metal all his life and twice had metal poisoning which is pretty serious and 2- there is a big study being done about the blue/green algae found in bodies of water. Daddy spent lots of time at the lake which I'd think could be predisposed to algae because of the lack of movement or current in the water. Early in his psp he contracted MRSA in a tiny scratch on his foot, after mowing the lawn. I wonder if we'll ever know for sure exactly what caused such a horrible way for my dear daddy to die. ;(
Www.ethnomedicine.org BMAA toxicity. Confirmed using the hair samples collection of a woman who died from psp. Also confirmed to cause als, pd and ad. All diseased brains tested positive for BMAA toxicity and all non diseased brains tested negative. There are probably many different ways to get these diseases, however, i'd imagine it's the same process. Toxins in our food build up in our bodies over time, depending on your genetic code, these toxins can be incorporated into the body's amino acid chains. In the case of psp, the neurotoxin BMAA substitutes serine in the amino acid chain, causing the stick and unstick functions of cell membranes to malfunction. They are trialling lserine on als patient and have just moved to phase two, however my dad has been taking 9grams a day for the past year with no change. There is a guy doing trials on another disease in Israel that is convinced bovine serine will remove tau in humans. There are no trials using bovine serine on these disease as of yet.
Read the" brain maker" it describes the connection between gut and brain health--- you have nailed it- and many doctors dont keep current with the research-
Mom has never had any chronic illnesses. No specific medication. She had one head injury 16 years ago. Then about 10 years ago started the periodic falls. One of the falls 4 years ago triggered the vision problems and from then on it has been downhill.
-> Has anyone tested for presence of heavy metals in the body? She ate rice cooked in aluminum cookware for many years. She likes to eat sweets, not a salad person so not much detoxing.
-> Are the patients high anxiety, high performers? Mom is a type A, super efficient, always on time person. Wondering if stress is a trigger.
All these responses are so interesting to read, I hope that one of the research teams already looking at PSP will start to find links. As I mentioned in my earlier answer my mum has Ulcerative colitis, having read through everyone else's replies I want to add a bout of MRSA too. I can't remember why she was in hospital, but she got MRSA and ended up in a room all on her own. Maybe we the carers will in time eventually start to join dots for reasons or causes.
My husband has PSP. I believe the symptoms started after he had a fall, hit the tiled floor and stopped breathing for a while. A lump the size of an orange came up within 5 seconds on the front right forehead. The swelling and bruising travelled right down the right side of his face the following weeks. He also worked in the chemical industry selling adhesives and resins. We may not know in our lifetime the causes of PSP but I am so glad there in research going on. It is the most hideous of diseases for the sufferer as well as the carer.
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