How I got Parkinson's

How I got Parkinson's

I grew up in Los Angeles and still recall the purplish hues hanging over the sunsets in the evenings. I lived just to the South of the 134 and know I've breathed pollution in East LA since I was two. Living by freeways, through Southern CA fires, (or under a flight path in San Diego) couldn't have been good for good for me...but then I went to work as a "conservation technician" at UCSD, repairing books with an adhesive called Polyvinyl-Acitate.

PVA as we called it is a very effective book repair tool. It's a synthetic "Elmers" type glue only much stronger and due to its chemical composition had to be stabilized with a preservative which (was and is) formaldehyde. Formaldehyde is very toxic (it was not shared with me that I was working with a toxic material.) I worked in the Preservation department for almost 18 years, everyday in contact (skin, eyes, inhaling) with a known carcinogen.

By the time I retired (on disability,) I had diverticulitis and my condition reequired having almost 50 inches of my colon removed. Once I felt better, my fiancee and I planned a beautiful wedding and I moved to the Monterey area. I had to make a living so I became a licensed DUI counselor. After almost 5 years of working there I began to shuffle and had a definite tremor. One morning I fell on the floor and couldn't get up...I couldn't raise my head up off the floor. They took me to the hospital and told us after a few days that I'd had blood clots in both my lungs. I was diagnosed with Leiden 5 Heterozygous, a hereditary blood clotting disorder. My internist then noticed how the slightest touch on my arms and other places on my body hurt me. She sent me to a rheumetologist who diagnosed me with fibromyalgia...Then add to all those problems my sudden weird Parkinson's symptoms and my head just wouldn't cooperate anymore. I got sicker and sicker until i finally gave in and went to a psychiatrist for a psych evaluation. I apparently was very depressed and who knows what would have happened to me if it wasn't for my husband, friends and all the medical help I've had.

From the last time I worked with PVA until I was diagnosed with all my health problems it was five years...I spoke with an attorney who says the statute of limitations for suing UCSD was over after one year; Nobody in my family has ever had Parkinson's or the blood disease. I have two older sisters who are both close to 80 years old but are both relatively healthy with the exception of A-fib (which they both have.

Neither of them has fibromyalgia or any psychiatric problems...I'm just grateful we have medical insurance, good friends and supportive family.

PVA and UCSD has robbed me of a future watchiing my grandchildren grow up.

2 Replies

  • hello, I was most interested in your story bc of your disclosure about PVA. I have used this myself as I went to graduate school to learn bookbinding and this is what we used. I know there are many many bookbinders who use this, altho i havent kept in contact with them, so i dont know if they are having any health issues. I am not a bookbinder now, as it was an interdisciplinary program with many other things. I am very sorry to hear of your trials. I was interested also to see your very early exposure to the toxic air you were breathing at a very young age. :-(( As a side note, a practitioner I know and work with just recently recommended Suzanne Somers book "TOX- SICK". She has a very interesting and personal story about how these things affect us. Sadly, we live in a very toxic world - its everywhere. I am younger than you, but I can't believe that this is the world I am now living in. I was JUST getting my life started, or so I thought after taking care of both of my elderly parents some years ago. ( they are now gone). My practitioner (dr. daniel from says that the GUT is what needs to be healed first, and I just started on some probiotics as well as calcium bentontite clay-- which is an amazing healing force that is natural! I had my first "fall" in 2010 but didnt go to see any dr. bc i started getting better. then, i was in a very bad car accident at the end of 2013 and since then things have been downhill. went to a neuro dr. finally who i thought knew what she was doing but she wanted to send me to a specialized MS dr. I didnt go. Then, months latr i looked at my chart and finally there was a diagnosis of PD. I don't have tremors or any of the other stuff that is common. I DO have that slow walking stuff and I am unstable. I could tell you more..... but .... I dont believe that doctors know a lick. I could tell you so many stories about how i was able to keep going-- for eg the time when i fell in my bathroom and used EFT to be able to get back up again. IT was amazing ( . I also recently learned that PD has an underlying core of FEAR. There are 2 blogs one of which is by a man who totally cured HIMSELF of PD-- never took drugs or anything. Gosh I could go on and on. Right now I am on the proboitics and also coconut oil. Good luck with everything and I really hope that you are somehow able to find some new hope to be with your grandkids. I know myself, am also searching for that elusive hope as I don't have a partner or even insurance anymore. Anyway, tx for reading.

  • Thanks for your very caring letter Kattalina...I appreciate you reading (listening really) to what happened and giving me such genuine, authentic


    I am very interested in the absence of certain cells in PD patients' colons...been reading about how the colon and lower bowels are another sort of brain (an automatic one) for our bodies. Problems with

    colitis in my 20's and 30's, bad constipation in my 40's developing into diverticulitis and an operation removing over 40 inches of my lower bowel due to so many tics...I finally figured out about raw veggies, which leafy veggies I can eat w/o an overload of Vitamin K. I'm seeing alot of movement in the stem cell movement...Implants of healthy stem cells in Europe and Asia are happening and although there isn't much data on the process yet, I expect there will be soon.

    One other thiing...spread the word albeit quietly about does cause cancer and I believe PD>

    Thanks, again

    Sally Sun

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