My dad suffers from PSP and I myself was suffering from a variety of unexplained symptoms. I was determined to get to the bottom of what causes PSP and how to stop it progressing. I went to a lecture by CURE PSP and after that I have been reading everything related to neurological diseases. The information out there is confusing and there are so many different paths. I have a master's degree in library and information science and I feel like it's my duty to share with you, what I have found. I put together a list of resources that help illuminate issues with certain ailments. It's a long story to write the details here, but if you are interested I can send you privately, a list with the sources of information I have and what I have been doing. I am currently symptom free. And even though I don't have a medical background per se, I am convinced PSP is not only preventable, but also stoppable. I am not sure about people who have already developed the disease completely like my father and are unable to eat, but I trust there are ways that something can still be done, regardless of how advanced the disease is. In my father's case, I am working with people in Brazil to provide IV therapy. If you are interested in learning more, please contact me. My only goal is to help. I have no personal interest or any hidden agenda. Best to all!
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Keiko278
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Library skills are really useful. Thanks for organising the material to share.
Yes, please put me down for a copy of your resources. Why don't you put them in a post? We have many different skills, training and experiences here and so there is a tendency to pool and discuss.
Also as we say in the UK, "Steady up a bit there." Chuckles. Enthusiasm is great, but your post seems to be saying that a med. lab.(?) in Brazil can crack this when we have most of the top neurological research centres across the globe spending $ millions and apart from some drug trials they are still at the stage of defining definitive diagnosis with biomarkers as there appear to be a number of different illnesses rolled up together. It would be great if they could come up with some sort of evidenced base treatment though.
You say you are still symptom free. I'm sorry you have been ill. Were they neurological symptoms? Could they not find any root cause? I am so sorry.
It's great you are putting your shoulder to the wheel.
I will share what I have. No, that's not what I am saying. From the readings I am doing and my personal experience, I believe the solution is actually nutrition. I don't have all the answers yet. I don't have PSP or anything neurological. The best doctors available in the area where I live couldn't diagnose me with anything. And one of the neurologists I had a consultation with told me sometimes an abnormal MRI means nothing and the opposite is also true. Take a person with many symptoms (neurological) like me and complete normal labs and MRI. I know neurologists and science are looking for answers and spending a lot of money on trials to find a pill. I have reasons to believe the answer is again on food and nutrition. My father already has a feeding tube on, so since he cannot eat the recommended foods that could at least stop progressing the disease further I am trying to see if any of the nutrition he needs can be given through his feeding tube. That's what I meant. Does that make sense? That's why I said "IV therapy". I hope I am making sense. English is not my first language. I know people skeptical and I know it's a huge battle. But as a librarian, it's my moral and ethical duty to inform. Thanks Kevin for replying. I still have hope that be people can be helped.
You will see I did a separate reply to your resource list. There are quite a few things I am looking forward to reading on it - Thanks
Is it just me? IV meant Intravenous - Perhaps you mean a PEG tube?
I'm sorry your Dad is at that aweful stage. It must be miserable for you both.
Sorry too that you are struggling with symptoms and no diagnosis. Yes, I too would go down the biome route were that me. Wishing you the best with that.
I do tend to eat with that in mind anyway, but I'm not strict, especially with regard to bread where there has been little work done to rule out herbicides which are often used in large quantities to ripen the grain. Also the effect of long traditional fermentation on the gluten. I never get that bloated gut thing with slow fermented dough made with organic flours. There is so much more work to be done, but it's very exciting. And, I expect you know all about fermented food and the biome
People will read these posts. And, I think its great that you are putting this stuff up here - Again thanks.
Yes, I meant intravenous. Certain therapies can be done that way. Also, I am looking into ways to have him receive some nutrition from fruits through his feeding tube. I am in the US and he is in Brazil, that's the hard part. I have to ask my cousin to ask his doctor. It takes some time. Again Kevin, thank you very much for reading and chatting with me. My symptoms went away with what I have been eating and that's the exciting part. I don't want to bore you with details. But it's working. I am so inspired that I am going to back to school (librarians are often nerds) and I am going to try to present to the local PSP group here in Florida. I have to inform people.
Recently I told my granddaughter and her boyfriend that I was going to stop eating bread and in unison the said, NO! They are both body builders and I do love my bread so I say, Yes to bread! Besides I am certain it makes your house smell yummy.
All is well in my world but stressful as normal. I am blessed in so many ways. My son may be moving back home again and we may be building a chicken coop. I love fresh eggs but I am afraid of chickens . . . guess it is time to get over that one.
I am so glad Liz will be home tomorrow afternoon. Hope Mother Nature cooperates and you both can enjoy the garden with your cat. Did I tell you that we have a cat with lots of extra toes - we named him Hemingway and he brings my husband his slippers at night . . .
Tell Liz the ax throwing is gathering interest in our neighborhood. I think the younger folks (45 - 50 years old) have a whole new respect for us old folks.
Enjoy your visit - Sending you both Hugs - Granni B
I just finished Tim's book - The PSP Chronicles and was wondering what to read next. Have you read Dr. Philip M Chancellor's Handbook Of The Bach Flower Remedies ? I discovered it after my son suffered head injuries from a motorcycle crash. If you check it out please let me know what you think.
What do you mean when you said your Dad has developed completely PSP if PSP is a progressive condition?
Based on conferences, neurological reports and this site, PSP is diagnosed (only confirmed post mortem) at a point where our love ones have been affected considerably in many aspects. In my personal case what would I gain to stop the progression of my husband desease at this point? At least, he has my support and I feel healthy and strong now but what about if something happens to me now? We all have wonderful and support children or family members but they have their own families and situations to deal with...
On our last visit to the neurologist, my husband asked the doctor if he recommended vitamin supplements and he said NOT, specially because they are not FDA approved.
And I hope you can find a diagnosis for your "unexplained symptoms" because if your Dad is the one with PSP you probably are in your 40s or 50s. and you have a long way to go...
What I meant was the stage that he is in now and has been for the past couple of years or so. One time he came to visit us in the United States and he already had an array of symptoms, but he was functional. We suspected he was sick, but had no idea what he had.
I guess I meant to say having developed the disease in it's full gloomy and cruel ways.
Patricia, many times I asked myself the same question: what if we can stop my dad's progression of the disease... why would we do that? I feel saddened that I wish at times that he would stop suffering. He doesn't talk or walk anymore and it's completely dependent on the care of others. My answer is always the same: number 1 - I believe my dad prefers to be alive. 2. If we can help other people who have been recently diagnosed that would be fantastic. 3. I would rather take action and do what's right because helping people is what I believe is the right thing to do. I would feel negligent if I knew something can stop progressing a disease and didn't do anything about it. Unless the person told me, let me die. I don't want your help. I don't want to live this way anymore.
Doctors don't have all the answers. We tend to think that they know what's best. Sorry to say it, but they don't. They are good at diagnosing, giving medicine, operating, but there is a lot that could be improved. I work in healthcare and from my personal experience, a lot of doctors lack empathy. Also, I do believe that we can't rely on other people to diagnose us or know 100% what's best for us. Unfortunately, they are trained a certain way, don't have our best interest in mind and don't ask the right questions. Don't get me wrong, we need doctors, but relying on them doesn't always work.
What I am finding out with my research is that fruits and vegetables can actually heal. I am not talking about supplements and super foods. I am talking about fruits and vegetables. Cutting the bad stuff and just using the natural chemistry of fruits and vegetables.
I’m very interested as well in your findings, (please include me in your mailings or posts). However... in my anecdotal example of my mother (also extremely intelligent) spent most of her time researching nutritional aspects of brain health for years and was a lifelong organic and holistic health leaning person in general, but all of her efforts had a little impact on the progression of her condition (with the remote possibility that she lengthened her life span as she is now going into her 14th year with this condition as best we can tell, however at this point she is completely bedridden). When she moved into her care facility, I threw out probably $5000 worth of supplements; she also had tried almost every alternative therapy including hyperbaric chamber treatments. Her decline at home was steady, even if slow - when she moved into her facility - her progression seems to have plateaued. She no longer has access to her supplements and nutritional self-care. So yes, nutrition may play a role but I can’t help but wonder if her own tinkering actually exacerbated her symptoms/progression (hence the discernible plateau since the move) - espescially because I’ve read an article on green algae supplements triggering a certain type of brain degeneration - and she definitely took “green” super food supplements.
At this point, all information is useful - it’s obviously up to each of us to draw our own conclusions and try to rule out beliefs from facts (which is terribly hard to do! I know because I was a researcher myself!). I valued the links Kevin and others posted from various conferences as well, if nothing else, this information makes me hopeful that there is active progression on gaining a better understanding as to what exactly going on, how to correctly identify, and ultimately - how best to treat.
Thank you for your comment. Without knowing details, I would be just speculating. There are so many people who do the supplement, green juice diet and end up with cancer or some other condition. I used to have the same kind of reasoning as you do. Such and such did this and end up with this, and so on and so forth. I heard of so many people who exercised, ate "healthy" and ended up dying young or very sick. What I can tell you from my own experience and my own conclusions to date is that every person is different and there are many factors that contribute to a certain kind of disease. What each one of us eats and are exposed to and how the body metabolizes those things is what is unique about each one of us. We are exposed to a lot of toxins on a daily basis, even if we live a "green" life. Maybe your mom was exposed to things that were debilitating to her and she had no clue. Again, I am just speculating. Take me for example, suffered from migraines and headaches all of my life. I had no idea I was intolerant to dairy and gluten. I had no idea I was allergic to shellfish. I thought I was eating healthy. And I was already seeing some decline in my brain health as well. I don't have answers yet and as you are probable aware, it would be extremely hard to conduct a study. There are though scientific articles on the effects of nutrition on mental illness. And I am not talking about supplements and super foods. What I can tell you is that I am determined to find some answers to maybe help people who are just starting to feel the symptoms of PSP. Had my dad been diagnosed earlier, maybe the outcome would have been different. I don't know, but I do like to think so.
With my husbands illness and care , I feel my concentration and time are both very limited. Can you please suggest to me the best book or a simple list of reccommended foods ( and those with negative impact). I do you best to serve him lots of fresh vegetables and fruits and a good healthy diet. I do include a sweet treat each day . He has lost a lot of weight because he eats slowly and gets tired. I am considering adding a protein supplement . He does eat bread, English muffins and rolls. They are easy for him to pick up and eat independently in sandwiches etc.
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50 years of PSP research
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