What we don't know

[Keiko278]

There are many resources out there explaining what PSP is and a lot of research being done in trying to find a magic pill that will not only stop the progression of the disease, but also hopefully give health to those who are affected by it.

When I went to see Alex Klein from Cure PSP in a talk in Broward County, FL I wasn't fully reading about the disease and didn't really feel like there was much that could be done. I felt powerless. I was struggling with going from neurologist to neurologist to see if I also had the disease.

I remember I asked questions non-stop at the CURE PSP talk and one of my questions was: there is a theory regarding heavy metals and the disease, what''s that all about? People in the audience started mumbling that their loved ones had never been in contact with heavy metals.

As time went by, that kept me thinking: well, we are surrounded by metals and heavy metals. Look around. Think about it. Heavy metals and metals are literally everywhere. We are exposed to things we don't even know or things that we don't really think about.

I wanted to post this article (below) because I think it can make all of us think about our loved ones and their lives. That's what I did and I am very certain that my dad's eating habits, plus his work didn't help him at all. If PSP is not hereditary, than it must be something we are exposed to that is causing it. It's something in ones own body that is not functioning properly until the point the body just "collapses". We are failing at reading the red flags. If you think about it, so far we haven't had cases (at least that I know of) of children with PSP.

Before you say: my dad ate healthy, my mom did this, my mom did that, think really hard about their habits. Maybe you never knew, maybe you didn't pay attention. What my own journey has taught me is that sometimes we are just misinformed regarding what we think healthy habits are. What I know now is that my dad was never healthy (but functional) and PSP was just the culmination of a long process of bad eating choices and possibly lack of nutritional intake.

The body has the ability to recover, but once it's constantly abused it loses its ability to do so. Do I have enough evidence to make a generalization? No. Have a read everything I have to? No. But I am trying to make all of us think and be aware.

ncbi.nlm.nih.gov/pmc/articl...

Thoughts?

Sending love and light to all,

Janine

[raincitygirl]

I don't know Janine,... I'm probably too "burnt out" by all the reading I've done over time on the subject of this disease. There is no idea really, yet, as to what makes the tau protein go crazy in PSP/CBD patients. Could it be nutrition? Possibly, but then how do you account for the relative rarity of the disease? If the patients aren't eating a "rare" diet, why then do THEY get the disease? OK, nutrition plus a genetic predisposition? As there's no research results on genetic predisposition, (at this point) where do you go with that? Toxic environment? Sure: I've seen groups inquiring into diesel fuel, agent orange... - but then why is there no evidence at all, in any scientific study of this disease that there was a common exposure - eg: a common geographic area of occurrence or a common industrial occupation amongst a significant group of patients?

One thing for sure, the search isn't over and we don't have answers, so believe me - I'm not dismissing your search!!... but you did ask for comments

Anne G.

[Keiko278 in reply to raincitygirl]

Hi Anne,

Yes!!!! I did ask for comments and your questions are my very same questions. That's why I am reading and finding for example that chocolate mixes sold at supermarkets contain or contained during certain periods of time aluminum. Did you know that? I didn't. Did you know that drinkable water has aluminum too? That antiperspirant deodorants contain aluminum? I am going to try and make a list of the references from PUBMED and post them here.

Last night I delved into my book called Nutritional Influences on Mental Illness and I found a few reports of observational studies on aluminum interfering with what? Can you guess? TAU PROTEIN! And those patients had Alzheimer's Disease.

Nutrition plays a role in not cleaning our bodies from the toxins we are exposed to. Meaning if we are deficient on certain vitamins, enzymes, mineral or there's an imbalance the body just goes wacky. Different chemical brain imbalances cause different symptoms as you probably know. Take dementia for example, a disease of the old. That specific population is particularity deficient in certain vitamins.

I started taking an Anatomy and Physiology class at the local college and I had my first class yesterday. We are basically functional because of chemical reactions that happen in the body and I don't mean to lecture you. But I can't help but think that different toxins affect those reactions differently therefore people have different symptoms, different diseases and so on and so forth.

Thank you for your comment!

Janine

[Keiko278 in reply to raincitygirl]

I just re-read your post and my suspicion in where you get the disease is a weakness in the body system. For example, why do some people have asthma (which is auto-immune) and other people have a neurodegenerative disease? Why some people have GI issues and others don't. A lot of things play into the results. My aunt for example died of Alzheimer's. My uncle ate the same diet. But on my aunt's side of the family there are a lot of people with brain issues: brain cancer, mental illness, bipolar disease...etc. So I would say it's a weakness in their DNA?

[Christine47]

Thank you for posting the article. And I agree with Anne. My husband (79) was diagnosed in 2012, confirmed PSP in 2013 and at that time I was doing what you are doing -- reading, studying-- trying to find out why. I admire your efforts. In reading the NIH article, it validated some of my own suppositions, with the lingering thought that there may be a synergistic effect of a genetic predisposition, heavy metal exposure, even BBMA, diet, etc. My husband had it all. I focused on the only thing I could do, that is what could be done to deal with the mitochondrial dysfunction, oxidative stress and tau hyperphosphorylation. So, he has been on a special dietary/supplement/exercise regimen for his six years. He is fortunate to have qualified for the Biogen clinical trial. I keep trying new things all the time, dropping others. To be honest, I am at times gasping for air. I seem to be holding dualities in my mind, from feeling demoralized to “looking at every day as a new stage of opportunity and strength.” Best to you in your studies and may I suggest you look into functional medicine.

Christine

[Keiko278 in reply to Christine47]

Wow, it sounds like you do and have done a lot. I admire you! Your husband is lucky!

Yes, I am looking into functional medicine. But I am more inclined into studying nutrition at this point. I believe I can do more for people that way.

[Christine47 in reply to Keiko278]

Functional medicine is, as I see it, a whole body approach to health. The objective is to find the root of an issue, rather than just treating a symptom. It combines allopathic, alternative, and complementary approaches. And it approaches each as an individual, rather than dictated by a standard protocol. My husband went to a nutritionist trained in functional medicine who looked at blood test results to address his PSP from a dietary and supplement approach. There is a website (IMF.org). Dr. Mark Hyman is the director of the Cleveland Clinic Center for Functional Medicine, also has a website. You are probably familiar with Dr.David Permutter, a neurologist, and author of The Grain Brain.

[Keiko278 in reply to Christine47]

Yes, I am very familiar with them. I actually am very enthusiastic of Dr. Hyman’s body of work. I will check out the imf.org website. Thank you!

[Malattia]

Hello Keiko, I have been thinking about the possible causes as well. Besides metals I think plastics could also be an issue. My mother did work in places where they made plastic molds.