Also do any of these groups ever collate what the sufferers eat, what there jobs were, what vaccinations they have been given, whether there tap water is hard or soft, high fluoride, chlorine and whether they lived in old houses where the pipes were lead, what jobs their parents had, their environment. I find it so frustrating that this isn't the norm with any serious illness. If you have collated this info then please send it to me. If I had psp do you think I would have the energy to scroll through endless websites to scroll through endless forums to end up with this. When I put psp palsy into google it should've come up with the most recent possible alternative help I could've got not a stream of rubbish. Start collating the info and help your followers. Magnesium chloride oil/dew transdermally applied, virgin coconut oil pulling, blue skate fish oil, chelate, colloidal silver water, David Hudson Ormeus, truth juice, Problems with Fluoride and aspartame. The lost is endless. The reason why I'm searching for a cure is because a good friends husband has just been diagnosed with psp and told there's no cure, the first question I asked "did he serve in any army and receive vaccinations" which she replied "yes he served in Kenya and had so many vaccinations and bloods taken during his time that he is sick to death of needles now". Is this not a good start to finding his cause. Was the vaccinations the reason. Good luck people. Keep the faith and start to find the culprit behind this, it is definitely not your fault. Peace and love
Why do the doctors say there's no cure wh... - PSP Association
Why do the doctors say there's no cure when after researching for 30 minutes I have found all sorts of potential help
good on yer truth juice peter jones queensland Australia psp sufferer
Hi Truthjuice
The discussion and investigation regarding the cause(s) of such diseases as PSP have been going on for years (even on this forum). Everything known to "man and beast" has been suggested (and most assessed by researchers), and there has never been a definitive answer (only "factors" that MAY, in some sufferers, be involved like head trauma, or a genetic component or even educational status).
You will read the same thing in the literature with respect to a cure (and cause) for many neurological diseases such as Parkinson's, Alzheimer's. MS, Huntingdon's, Motor Neurone etc etc etc. In some of these diseases, like MS, they know the body itself destroys the neuron insulation layer, or in PSP they know the damaged protein (tau) that seems to be the culprit in the final death of the neurons. There is no cure for these diseases yet and only the symptoms are treated (and even the latter is problematic).
One needs to understand the nature of this (PSP) disease (the molecular pathology, the protein chemistry, the biochemistry, the neurological physiology etc etc), before one can apply the reasons (science) for taking supplements and medications, and whether they will be efficacious.
In your reading you'll have seen that the damaged in the brain of PSP sufferers (and similar) commences some 10-25 years before any symptom show. Hence the great problem in finding medications that can stop the progression (and even greater problems in finding a cure). This has been shown very clearly with Alzheimer's with the billions of dollars research, and still NO drugs to stop it in its tracks.
This analogy is very poor, but a neurological condition such as PSP, is like trying to stop a runaway train. It's already moving fast down the track, and it's believed the brakes have failed. The "drivers" can usually stop it, but in this case nothing is working (just like the proteins in the brain that should work but are damaged and the cells cannot fix the problem in the usual way. Why they become damaged is still a work in progress for scientists). You know that you cannot derail the train to stop it - everybody will die, but eventually that will happen if it is not stopped. So you throw a few twigs and leaves on the track (supplements), and it has minimal affect. You manage to land (by helicopter) a brake specialist into the cab (medications/drugs), but he realises that he can fix one or two things but the whole system seems to be destroyed (so his efforts have minimal benefit). In the mean time, it's noticed that the wheels are also faulty (so in the brain it's not just one type of cell but others are affected- neurons, astrocytes, oligodendrocytes). The runaway train cause problems as it passes through stations like wind gusts and debris and passengers are buffeted and stressed (the disease creates problems with balance, eye movement, swallowing, talking, personality changes, fatigue etc....symptoms that may or may not benefit from some certain medications)........
Unlike this poor analogy...In the case of PSP, it's the symptoms that eventually cause the demise of the sufferer (by aspiration pneumonia or other infections, or complications from a fall, or pulmonary embolism/primary neurogenic respiratory failure).
I don't know whether all the above is too negative for you Truthjuice. I welcome your response, and the opinion of others on this well worn subject.
Take care and trust your good friend's husband will find as much support, comfort and love as he and his carers travel this journey.
T.
Well said Strelly. The cause is not important, a cure isn't in sight, so why not spend time on something you CAN change like the life of the PSP patient? IMHO
I love the way you describe everything clearly.
Good info Strelly. Love your posts!
Strelley,
was going to answer but you've done such a better job than I could. Im afaid help is not a cure. And from my experience a lot of these ideas they have come up with may work for a bit but in the end the symptoms win out and are best managed with common sense.
Hi, Truthjuice,
My wife had PSP and donated her brain for PSP research. I have asked our children to ensure my brain is used for the same purpose. We lived together for 50 years and in consequence were subject to similar environmental exposure and diet etc., that may be helpful to the researchers, who knows? It is almost certain that our bodies will have dealt with contaminants differently and, I did not give birth to three children, with all that entails!!
Strelley's brief summary of a few of the considerations and complex systems involved makes it clear how difficult
nailing a single causal mechanism is going to be, even if there is one!
Recent research into alzheimer's appears to indicate that a complex mixture of fats in the blood are an indicator that you are likely to develop the disease later in life. I truly hope something similar will enable the early/positive diagnosis of PSP rather than the current, repeated mis-diagnosis but I doubt very much if there will be a simple 'silver bullet' to overcome PSP in the near future. Meanwhile the energy you have thus far shown will assist you to help your friends to manage the day to day changes that will inevitably come. Be sure to get all the help you can so that the main carer keeps fit and well. This site is populated by people with direct experience of living with PSP and there is no substitute for 'experience' particularly with the variety of symptoms and progressive nature of this disease. I hope you continue to visit this site, I only wish it had been available to me.
Best wishes, Jerry.
Truthjuice, Probably the reason there isn't a composite of information on personal history is because only someone in the medical profession would compile it. In my opinion spending time on this type information is a waste of valuable time for a caregiver or PSP patient. My first wife died from CJD another brain disease and the staff at the University said "Don't waste your time on what the cause is, spend it improving and dealing with the disease". Knowing the cause won't change things. The disease had been identified in the 1960s and many, many, studies have been done since then without experts identifying a cause. There are no known medications, treatments to slow or cure this disease (PSP). Many things have been tried but mostly to give relief to symptoms, not a cure for the disease. Problem is that some things work for one patient but not another. Also the patient they help the help doesn't last for a long time. My motto is to try anything you think might help but don't hang your hat on something someone else says works for them. I share your frustration as my wife has PSP. I've learned that it doesn't matter what "stage" she is in or what is coming next. I've learned to live one day at a time and make the most of it. There are no guarantees as to length of life even for a "healthy" person. You could die numerous ways in life, even at a young age. But then I'm stating the obvious. Tell your friend to spend time loving and caring for her husband and to take one day at a time. Stress will be huge on her and spending time worrying about the cause will not help. Just my thoughts, others may not agree.
Jimbo
Wise words - spoken from a man who clearly has real experience of life and all it throws at us. Sometimes there are no answers, just challenges thrown our way to test us while we're on this earth. I am sorry you've had more than your fair share. You are so right though - our test in life is how we deal with the tough stuff - one day at a time. Also, my Mum got dangerously ill looking after my Dad who has PSP, so we have to not let the things we can't control eat us up, or we are no good to anyone, especially the person we are caring for, who needs us more than ever. Your experience of brain disease is more than one person should have to bear, but there is a reason you and your wife found each other. I wish you happy and peaceful days ahead and courage and love in the difficult ones. Tania.
Hi Truthjuice
I can completely understand your wish to want a cure for PSP and to find reasons for it and your frustration in there not being a study which collates relevant information. My 82 year old mum has had PSP since at least 2005 when symptoms started to appear. Her history is pretty simple and straightforward. Born in a Victorian house in Birmingham probably with lead pipes. Went to school from 4 to 14 where she received head trauma several times, inflicted by one particular teacher who hit her on the head with a heavy book and bashed her head against the blackboard amongst other things. She left school to work as a sewing machinist in the rag trade. Don't know about vaccinations as not sure what was available when she was a child between 1931 and 1945 as the NHS had not come about at that time. She married my dad aged 28 and had 4 children in 8 years. She continued to work as a sewing machinist until she retired in 1996. In 2000 she went abroad for the first and last time to Italy. My dad passed away in 2004 from Mesothelioma. Pretty standard really for a woman from a working class background. The only thing that stands out for me is the head trauma as a young girl.
Best wishes
Liz
hi truthjuice i agree that the medical profession have a lot to answer for ... both in not doing enough to find a cure but in not trying to come up with some real evidence of the stuff that us poor psp sufferers are using to try and help themselves....
Our neurologist talked a while about how hard it is to get funding to do the studies she wants to do. She spent years of her professional life on the CoQ10 study, and was clearly unhappy that it didn't yield a positive result, except it may save some of us from wasting time and money and hope on it! She's interested in exploring a different avenue and is applying for grants to fund the next study.
Here is one who is working hard for us!
THAT IS GOOD NEWS EASTERNCEDAR ... . THERE ARE OBVIOUSLY EXCEPTIONS TO EVERY RULE .....
Thank you all for your kind response to my attack/rant on this great forum. I am sorry for my rant, just venting off frustration. I will continue to use this site as there is so much helpful information. Thanks
Truthjuice
VENT AWAY DEAR TRUTHJUICE !!
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