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What do you think is at the root of your Parkinson’s diagnosis?
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We don’t know but suspect it could be related to head injuries my husband suffered throughout his life, as early as his late 20s. His REM Sleep Behavior Disorder symptoms started in his mid 30s. Then he developed Orthostatic Hypotension after experiencing a TIA in his early 50s. He declined rapidly from there, especially after suffering a series of strokes immediately following hitting his head on a granite counter while fainting from an OH episode. He was never exposed to chemicals and we don’t know his family health history as he was adopted in 1960.
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Diagnosis less than 6 months after the neighborhood I was living in at the time burned down in the 2017 wildfire in Northern California. Hundreds, if not thousands, of homes were destroyed; and while the one I lived in was not, there was the trauma of the evacuation and seeing all those melted cars and chimneys left standing in the rubble. I never considered that trauma may have led to the diagnosis, but some of the early replies to this forum suggest it may have. There is no genetic connection, but I have been exposed to my share of environmental toxins including glyphosate.
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I am sure there are many pathways. I know my Mother was exposed to heavy metals and other chemicals as a lab technician and while working on her Masters and as a Pottery Enthusiast when I was young. She died of Parkinson’s in 2004, after living with symptoms for at least 12 years. My symptoms started about age 63 and I have progressed and I am 76. I ran the largest photofinishing plant in the US processing up to 2,000 rolls a day. Sixteen years of exposure to formaldehyde, potassium ferrocyanide, EDTA, organic compounds of color chemistry, developers, and bleach fixer. I was quality control and night production manager, bathing almost in the chemistry while mixing and testing 500 gallon batches. My worst symptoms occurred after a bypass. My Mother was deeply affected by my Fathers death in 1995. She was in a nursing home until I persuaded her to live, by repairing and restoring her home. I know the journey, I think I am fairly far down the pathway.
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I was diagnosed at 47 in 2016 having noticed a tremor whilst driving.
Having thought about possible triggers I can think of a few possibilities: cleaning typewriters with solvents whilst working for IBM at 18; cleaning car engine parts with Gunk engine cleaner; knocking myself out on the bathroom sink whilst suffering with flu at 28; being knocked unconscious when knocked off my bike at 32; working in IT for many years in very stressful environment; physically stressing myself whilst riding the pennine cycleway- I didn’t ride my bike for 3 months after this because I felt so exhausted. I was diagnosed the next year.
It could be any or all of these or probably something else. No one in my family has ever been diagnosed with PD. Just me.
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I am 99% sure it’s genetic. My mom had it; interestingly enough, we were diagnosed a the same age, each of us when we were 54. I’m 62 now, eight years later and my 61-year old brother was just diagnosed with it. I’ve been in the PPMI study for 9 years now (I was in as non-patient because I tested positive for the LRRK2 mutation before diagnosis.) Modern medicine has been a life-saver. It’s been easy to relate how I’m doing vs. mom. She had a much tougher time, and while I know we’re all different (including mother and daughter) as her caregiver, I also know the meds are much better now.
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About twenty years before I was diagnosed I accidentally fell into the stained concrete business. The people that put me in business cautioned me about the dangers of the stain. 3,500 exposures later I started having problems. One of the heavy metals that was in the stain was manganese, copper was in some colors.
People began to comment on my decline. I would get on my knees and have a difficult time standing. Before I drove up our long drive, I would get out and walk around the truck to workout some stiffness so my wife and children wouldn’t see me walking bent over, leaning to the left.
My wife surprised me at our GP’s office for back up. I had to get out of the chemicals. I snuck around and completed some projects and completely retired at 55. My dad was still working at 81.
After I retired I became seriously depressed and was diagnosed by a Neurologist. Sinimet helped. I started adapting to a new life that eventually included a grandchild that I raised until he started kindergarten and went to live with our son. I never dropped the baby.
Manganese has an 8 1/2 year half life. By the time I reached that point my progression slowed. I have minor tremors now and plenty of other Parkinson’s blessings. I’m not taking any medication right now. I exercise and see a therapist to sooth the depression. I hope to live for twenty more years adapting to this chronic illness.
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I think my PD came from a combination of things.
I flew fighters in the Air Force for 20 years. I was stationed at different bases throughout those years. The base I think affected me the most was George Air Force Base in Victorville, California. Seven years there and then I learned of the gross contamination in the base water, basically the whole environment that was George AFB. This is where I believe my PD started, but no symptoms for years.
Jump ahead to April 2017 and the suicide death of my wife. The trauma of finding her triggered the PD that was dormant inside me from my exposure to the George AFB environment. I began to see tremor symptoms in early 2018 and was finally diagnosed with PD January 2020.
So this combination is what I believe produced my Parkinson’s.
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The toxic water at Camp LeJeune Marine Corps base! We lived there for two years. I was the lucky one, but my husband was diagnosed two years ago.
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There are literally DOZENS of papers in the scientific journals linking exposure to trichloroethylene (TCE) in the water supply at Camp Lejeune to the development of PD.
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Thanks for this timely connection, Jackie. More of these in future, please!
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HEREDITY. my dear grandfather had it.
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Exposure to DDT sprayed in bedroom to kill mosquitoes. (I lived in the South Pacific.) Also I believe in the gut brain connection.
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My symptoms began almost exactly 2 weeks after my first Covid shot. It was also a time when I was under immense stress due to caregiving for my beloved now-deceased husband. The combination of factors? After the Covid shots, my husband also suffered the metastasis of his cancer that had been in remission for nearly 20 years. My doctor has been tracking her patients whose cancers had been in remission until Covid vaccines. There seems to be a link there.
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A number of years ago while visiting in Ankara, Turkey, I was walking on an icy road leading up to a castle, when quite unexpectedly, my feet flew up in the air and I landed on my back, hitting my head severely on the cobblestone road. I could feel my brain literally hit the frontal part of my skull and wondered if I had suffered a brain injury. I was carefully monitored by our hosts and Turkish paramedics through the night, and fortunately survived. It was very frightening. Looking back, it seems to me I began having some neurological symptoms from that time on. I was diagnosed with PD almost 2 years ago.
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I was part of the US Navy brown water operation patrolling the rivers of the Mekong Delta in South Viet Nam from January 1968 until November 1968. All of the water we used came from the river and was contaminated with Agent Orange. We also were in areas that were sprayed. So the short answer is Agent Orange exposure in Viet Nam. There are several other conditions in addition to Parkinson’s Disease attributed to AO exposure.
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I have come to believe, as Parkinson’s proceeds with its disassembly of my nervous system, that I was poisoned. Until I was 12 years old I lived In a little town called Parma, in southwest Idaho. It was a great place to be a kid, and I and my brothers were permitted to explore anywhere. The ditch rider’s road along the sides of the canals carrying irrigation water to the diverse ag products grown there let us see strawberry fields, hop yards with their gigantic trellises, fields of mint, onions, tomatoes. There were hundreds of acres of sugar beets, and for sure, acre after acre of Idaho’s prize, the Russet Burbank potato. Now remember, this is about 1955. It was firmly believed by most farmers that pesticides were the way to go when it came to improving yield. Chlorinated bi-phenyls (remember DDT?) were used on everything. My mother sprinkled Chlordane powder in all her flower beds and in our kitchen garden, which we kids were expected to tend. The Chlordane took care of the earwigs. It also killed a couple of our cats.
So, we were exposed all the time to some of the most dangerous compounds anyone ever came up with. And, if that were not enough, my brothers and I might be trudging home for supper when we heard the rising – falling sound of a crop duster. If it had been a hot day, we would get to the edge of the field being sprayed and stand under the refreshing, cool poison being delivered to the strawberries. I never remember thinking that cooling minute might lead to nervous system destruction.
But the chemicals we thought were probably OK to use on the food we ate, and that contaminated the water we drank and bathed in, and the air we breathed were not the only threats to our future. Are you old enough to remember the cars of the Fifties? Longer, lower, wider, and always more powerful. Those engines were not particularly sophisticated. They got their power simply by forcing more air and gasoline into larger cylinders, then compressing the mixture as much as 10 or 12 times before it burned, and propelled the car. Compressing air that much causes it to get really hot, so hot that it may cause the gasoline in the cylinder to explode violently before the piston hits top dead center. Gasoline producers soon learned that gasoline (mostly heptane with a little octane) had to be augmented with a substance that would control this “pre-ignition”. So, most gasoline in those days contained tetraethyl lead.
Most of this compound shot out of the tailpipe of cars, fouling the air with lead, one of the more dangerous elements in terms of potential damage to nervous systems. But I was always working on some kind of go-kart powered by small one-cylinder engines. Those engines were usually not in very good condition, so that they would fit my budget, and I spent a lot more time trying to make those motors run than I did driving whatever contraption they were meant to propel. One of the weak points of these worn-out motors was their carburetor (you know, the thing that is supposed to mix very precise amounts of gasoline and air to burn in the cylinder). Consequently, my hands were often soaked in gasoline, and I breathed it so much that I could taste it hours later. Much of tis gasoline had so much lead in it that when it evaporated, it would leave behind a dark, sticky resin that I only much later learned was highly toxic.
Between poisoning myself with lead, and living in a world contaminated by chlorinated biphenyls, it’s probably a wonder that I was 65 years old before I started getting symptoms that later would be diagnosed as Parkinson’s. And then, Parma, my home town, was often downwind when they set off another nuke at the Nevada A -bomb test site.
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Thank you for sharing your experience. With a few minor variations, I grew up under the same circumstances In Wisconsin. And then I worked for a railroad on the west coast where every time a commuter train whizzed by it kicked up a cloud of herbicide infested air of which the contents I was unaware of. Little did we know.
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I’m 72 and was diagnosed with Parkinsonism and Lewy Body dementia about 9 months ago. Around 3 years ago I was diagnosed with PTSD from some traumatic events that happened 50 years ago. I had suppressed memories of these events until I retired and had nothing but time on my hands. It started with nightmares and flashbacks and progressed from there. The VA gave me counseling and several prescriptions. After a couple of years I started having occasional tremors and chronic muscle twitching in my arms and legs. I was sent to a neurologist who ordered a DATscan of my brain. Based on the results, he diagnosed me with DLB and Parkinsonism. He told me that there was a strong possibility that this disease started with the PTSD. I believe that is exactly what happened.
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Wow, Don. Thank you for sharing your experience. I hope you are receiving good support for the PTSD you are dealing with as well.
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For what it’s worth, my Parkinson’s symptoms appeared shortly after contracting Lyme Disease. My doctor assures me there is no connection but there it is.
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Most interesting. My Husbands’ Parkinson’s symptoms started to show up shortly after a tick bite. He tested as having anaplasmosis virus, different and more deadly than Lyme, if not noticed in time. Probably it didn’t cause Parkinson’s but very possibly triggered it.
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I have a friend in Canada who exhibited PD like symptoms. Her doc said she had Lyme’s Disease in the beginning. Then the prognosis changed over time, which resulted in her current disease… Parkinsonism.
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My husband was an avionics technician aboard an aircraft carrier in the South China Sea in the early phase of the Vietnam War when tactical herbicide spraying had already begun. He had all kinds of exposure on board that ship. Throughout his entire adult life he began experiencing various preclinical symptoms of the disease, such as
seborrheic dermatitis, treatment resistant depression, mild memory impairment executive functioning problems, and loss of smell. He started having these problems without other occupational exposure as a college professor and healthy diet and physical activity. Some of these problems interfered with previous marriages. I have been married to him for close to thirty years. There is no family history of this disease. His physical symptoms finally manifested a year ago at age 82. I have always recognized that he had been traumatized by his early life experience, but wasn’t sure exactly how. Now we have finally put all the pieces together and he is receiving the treatment he needs and richly deserves. His depression has lifted and we are still living the full life that we have always had together. I love being his caregiver among everything else.
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My husband was diagnosed with Parkinson’s in 2019. He lost his sense of smell about 30 years earlier but Parkinson’s was never considered until he began to have a small hand tremor in 2019. There is no family history of Parkinson’s that he is aware of. He worked for in the scrap metal industry, where they use chemicals to process the metals. His office was located right next to the area in which this was done and he breathed in those fumes for ten years. Although there is no proof and it is all anecdotal at this time, we strongly believe that is the root cause of his Parkinson’s.
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I was diagnosed with early-onset Parkinson’s disease at the age of 48, following a DAT scan that confirmed my neurologist’s clinical diagnosis. I am currently 50 years old and taking Sinemet three times a day.
I believe my Parkinson’s may have been triggered by having shingles approximately ten years ago. The shingles affected the right side of my face, near my nose, where a blister formed. I experienced such severe headache pain from the shingles that I went to the emergency room, where I was treated with painkillers that reduced my pain level from a 10 to a 5. After a day, the headache finally subsided, and I was able to go home.
My initial symptoms started with a tremor in my left hand and a lack of arm swing while walking on that same side. Since the right side of the brain controls the left side of the body, and my shingles appeared on the right side, I believe the shingles caused my symptoms. However, my neurologist is somewhat dismissive of this belief.
I have never been told that I act out in my sleep, nor have I been diagnosed with REM sleep behavior disorder. Additionally, I have no known family history of Parkinson’s disease, and a genetic study revealed no variants linked to the condition.
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No genetic history, lots of chemical exposure plus air and tap water pollution.
For the last 32 years, I’ve been sleeping 50 feet from a high voltage power transmission line. Before I moved in, I got the local utility to bring a meter out and measure the radiation, which was minimal. Now I wonder how good the meter was. PD age 70.
Not to mention heavy cell phone use.
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My very smart chiropractor, Duncan McCollum told me that over time, the toxins we are exposed to build up in our bodies and that process compromises our immune systems. We can even receive toxins via umbilical blood in vitro from our mothers. We each have varying abilities to handle the toxins based on amounts and genetic predispositions. For some of us unlucky types the toxins eventually overwhelm our bodies and especially our brains where the blood-brain barrier can let toxins in where they do damage. Things we barely think about like the mercury fillings in our teeth and the untold other things like petrochemicals, pesticides, microplastics etc can accumulate. Eventually these things cause the damage that we here know as Parkinson’s disease. Different toxins with similar results. Could even be caused by exposure to microwave oven energy or RF radiation or paint chemicals or the granddaddy of them all….heavy metals. When my Neurologist asked me what kinds of environmental poisons I have been exposed to in my lifetime, I had to tell him pretty much all of them. It is a bit late now foe me to try to detoxify my body but perhaps it wouldn’t hurt to try under the guidance of a professional. Sometimes when people ask me what causes Parkinson’s disease, I look at them quite seriously and say that it comes from one too many violations of the 5 second rule of dropped food.
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For me? / My belief . . . my left hand/arm tremors commenced immediately after open-heart surgery during Sept 2020 (My age at the time: 65). Constipation became more noticeable at the same time. I used Roundup often during my 50 – 60 year age range. Additionally, I was exposed to TCE during my 16 – 18 year age range (Early 1970’s). I’m leaning more toward the root cause being Roundup, and way less TCE. BTW – 23&Me reports I do NOT have the PD gene(s).
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Atenolol
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I worked for several years in a pesticide unit and had several minors exposures, including MIC. Methyl isocyanate. My research didn’t uncover any good links to the MIC or the cholinesterase inhibitors we produced. More likely, I believe my PD was the result of the cleaning solvent I was exposed to while doing automobile repair workin my 20’s. I was diagnosed with in 2022 but had probably had PD for 4 or 5 years before that. I’m very fortunate that my motor skills are impacted very much. I’m still able to do most of the things I’ve liked to do. Walking and running with my dog, golf, pickleball and fly fishing.
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