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What do you think is at the root of your Parkinson’s diagnosis?
What do you think is at the root of your Parkinson’s diagnosis? Did you work in a profession or live in an area that may have contributed to its onset? Is it hereditary?
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78 Replies
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I was diagnosed with PD 7 months after the suicide of my life partner. More than one neurologist I have spoken to agrees with me in that any type of severe trauma (emotional or physical) can trigger the disease. One friend of mine diagnosed with PD before me, had an extremelt difficult first pregnancy. Another friend diagnosed before me was attacked by a man who broke into her aprtment and beat her up.
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Hi Jean, thank you for sharing these points. We as a society are learning more and more each year about the very real and impactful connection between physical and mental health. Thank you for illuminating another one of these connections as relates to PD. <3
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I have not heard of this thought but I do know for positive that two years after my diagnosis my husband died. Then having to get house ready for sell and then moving my disease took an upward turn and by 5 yrs after diagnosis I had a DBS surgery. And 2yrs later I moved to a long term care facility.
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Debbie, thank you for sharing your experience. All of that sounds incredibly difficult. How are you doing now?
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I was diagnosed with PD one month after my mother passed away. If the trauma of losing my mother wasn’t bad enough, I had to endure the wrath of my sisters who refused to help take care of mom but they sure had their hand out when it was time to collect their share of the estate.
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Nancy, I’m so sorry that you had this experience. I hope that your mother’s estate has been settled and you have had some reprieve. How are you doing now?
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Starting to wonder if watching hours of Television as a youngster is a contributing factor of my Parkinson’s. The old cathode Ray picture tubes were notorious for emitting X-rays. Has any research entity looked into this possibility? Back in the 80s I was enrolled in a class being taught by a former engineer for Raytheon Corporation and he told us about the dangerous X-rays that televisions gave off and that the closer a viewer sat to the set, the more damage that could occur to a viewer’s brain.
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Mu husband was diagnosed with Parkinson’s 4 1\2 years ago. I’m sure the sudden death of our only son from a brain tumour 2 years previously was the trauma that caused the start of his PD. Our son had just had his 47th birthday, was an active sportsman and had had no other health problems. I cried a lot but my husband was very stoic and strong for me and took his grief internally.
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I don’t have any of the 7 genetic markers associated with PD so far. We all have been exposed to some amount of TCE l, a known cause. As an organic gardener I used a significant amount of rotenone, another know cause. I also had type 2 diabetes for over r5 years, a recovognized correlate. So who knows. Could be a combination of any of those with several other reported correlates. #pesticides
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2015 i fell on my back. Major operation with cervical one Dr said my adrenal glands -,salt, was injured. 6 years later i got Parkinson symptoms and tremors and then fainted. I had addison and almost died. My tremurs stopped . K walked better. I learned that dopamine used these glands to get gut dopomine to the brain. I have gait problems only. I am European and international lawyer. I fitmly
believe that the non motor dymptond side effects that we have to deal with. But dopamine can not go to the brain by blood. It is why we have l_dops. But we know it used the adrenal glands to get dopamine to the head. I, a sceptic french think because of the accudent, then parkinsoni and then Addison have a flow connection as the normal dopamine
Was slowed down by the Addison gland. I take one tablet per day for Addison. I have no dark skin. But the Parkinson advance
symptoms are faster as the gland can only work max 10 years on fabricated salt. I believe that there is an active relationship between the adrenal gland injury and Pd. This comes from a fact only believer. But it sounds logicsl and i feel it.-
Patricia, thank you for sharing your experience. You shared an interesting comment about adrenal injury. What does your doctor think?
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It is interesting-the concept but then u are a lawyer.Any inbalance in electrolytes may mess up with the equillibrium of the brain.J F Kennedy had the same problem but never showed parkinsonian symptoms
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I worked on accounting job for 20 years in a chemical company in India that was manufacturing dyes and related highly poisonous chemicals. Although my job did not include direct handling those chemicals, but there was 9 x 5 = 45 hours exposure to the air pollution prevailing in the nearby area. I believe this exposure was the root cause which manifested as PD 12 years after leaving that job. Exposure to toxic chemicals through air, water, food and especially plastic is globally considered to be a potential cause for PD.
Then I moved several miles away in IT industry for 15 years where I used to work in a very clean, airconditioned premises but the job demanded high amount of work pressure affecting mental health. I believe changing to a stressful job and previous history of chemical exposure accelerated onset of what is known as young Parkinsinsm when I was 54.
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Ravindra, thank you for sharing. I’m noticing a trend with these replies, from you and others on this discussion topic… stress may be a huge contributing factor. The literally toxic environment you worked in surely can’t have helped matters either.
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As my case follows a path of logic, they believed it. I am not lacking dopamine but i am lacking the transmission from gut to brain via Addison ?? gland. In France, where i am from, they are watching accidents one of possible cause/,effect. Slow working results of dopamine is the general reason for Parkinson and accidents vary the. Effects and speed for not only Parkinson but other problems. So they are very interested.
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Thank you for responding, Patricia. Are you interested in being part of any research into this idea?
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I believe my Parkinson’s was a combination of genetic and environmental factors. My father and grandfather had it. So it likely has a genetic component. No one else on my father’s side had it though one of my Dad’s brothers and his sister had Alzheimer’s.
The environmental part is a big question mark. My father grew up on his father’s dairy farm with well water and I’ve lived in two houses over the last 25 years with well water. I wouldn’t be surprised if the air pollution in New Jersey had a contributing effect. Thankfully, that’s been reduced.
As a kid I loved building model cars which included spray painting them in the basement with no windows open. I was exposed to DDT spraying on occasion. I’ve also enjoyed time outdoors in the summer but am sensitive to topical chemicals. I sprayed myself regularly to keep from getting bitten by mosquitoes and horse flies.
Sometimes I think that our environment is so filled with artificial toxic compounds that we can’t help but be exposed to something that triggers PD eventually. If only I hadn’t breathed or eaten over the last 60 years! We live in a dangerous world. I consider myself lucky to have made it this far.
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Hi Ken, thank you for sharing your experience. I think you make a very good point about the overall environment of our modern world. I wonder what people 50-100 years from now will think of how we lived!
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As a child my father used o have me go into the extensive vegetable garden and dust the cabbages with DDT. I distinctly remember the sweet smell of it. Then we’d eat the cabbages both fresh and in homemade sauerkraut. This went on for several years before DDT was outlawed. But at the same time both my father and grandfather came down with PD and I was diagnosed in 2009. My two younger brothers have so far been PD free, of course they are 6 and 8 years younger than me and likely not exposed as much as me. Interestingly I enrolled in the PDgeneration study and it was determined that I had none of the faulty genes they tested for. It’s still a puzzle. I have progressed slowly until about 5 months ago when I started developing uncontrollable tremor. My neurologist put me on Nourianz. With my insurance the pay was a manageable $100 a month. Unfortunately they said they made a mistake and the copay would be $523. As it seemed to be ineffective in dealing with the tremor I stopped taking it. I may try starting a new thread as I am active at the gym and have been since 2003 but I’m growing weaker it seems by the month. Darn.
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Let me share with you my experience after both the delivery. I gave birth to the first child when I was 26 and second child when I was 32. After both delivery I experienced hyperlactation. After the first delivery due to lack of access to Medical Services and appropriate drugs to treat hyperlatation and since the situation was going out of control and I was profusely lactating I had to gradually stop feeding the baby. Hyperlactation was extremely painful and caused me tremendous inconvenience although I pumped Bottles And bottles of milk and supplied. Exactly the same story repeated after the second delivery. But I got some medicine to treat the hyperlactation. I had suffered from high fever and was on antibiotics for 10 days.
Hyperlactation is a outcome of lack of secretion of chemicals from the brain and this proves the root cause of cells creating dopamine to die. I went on a diet and reduced substantial fact prior to being diagnose with parkinson.
While I had reduce substantial weight and fat one fine day I found my neck stiff my hands fingers frozen and my walking was affected.
For very long time I ignored these symptoms. One day when I went to see a Neurologist he wrote on a piece of paper after examining for 10 min; to have been diagnosed with Parkinson. I was 41 years old then.
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I’ve read that allergies do not cause Parkinsons..but we moved out west where I have strong allergies to sage; juniper; western wheat. After living in fields of this stuff , chronically dealing with inflammation of severe allergies, 8 yrs later signs of Parkinsons.
Getting allergy shots. My symptoms are much better when the inflammatory response of allergies are decreased-
Diana, I hadn’t heard about the potential connection between PD and allergies. Thank you for sharing. Have you talked to your doctor about this?
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T’is true Ally. Some have noticed this allergic connection as early as 2018. See https://parkinsonsnewstoday.com/news/migraines-ocd-seasonal-allergies-may-be-risk-factors-for-parkinsons-large-study-suggests/
It also occurred to me that maybe, in a similar way, PD is somehow linked to inflammatory response as a result of exposure to harmful pathological chemicals or viral pathogens. For example, people exposed to bacterium that leads to Lyme’s disease their immune system is altered, causing it to attack healthy CNS cells. These bacteria apparently alter dendritic cells, which… signal an immune response against infection that cause receptor sites on the surface of dendritic cells, known as HLA-DRs, to mature and become active. Normally, these HLA-DRs cells would present antigens to killer T-cells, the immune system agents that remove invaders from the body.
Researchers believe that when the HLA-DRs interact with the autoimmune system, they are structurally changed and keep the dendritic cells from “marking” the invasive proteins as foreign, which could lead to the dendritic cells attracting T-cells; but instead of attacking the foreign invader, attacks the healthy cells. If a person has a genetic predisposition to autoimmune diseases (such as rheumatoid arthritis or PD) infection by certain diseases such as Lyme’s disease may trigger their development. See https://www.healtheuropa.com/new-study-shows-lyme-disease-alters-immune-system/104461/
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I don’t have any of the known genetic links to PD. When I was 2 my mother treated the yard with 2-4-D to kill dandelions. My brother and I were in the yard and I turned blue and was taken to the ER. I have always been highly sensitive and grew up on a farm with lots of sprays and chemicals in the air (but not paraquat).
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Wow, that’s a really intense experience, Dave. Have you ever asked a doctor about it in relation to your PD diagnosis? Has your brother or any other family member shown any side effects or symptoms as a result of being in that environment/around those substances?
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I was in the navy during the Vietnam era stationed abroad a aircraft carrier. I was exposed jet fuel fumes & jet exhaust fumes all the time, plus paint & solvent fumes from the storage area for them next to the shop that I worked in.
No one in my family has ever had parkinson disease.
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I was in the navy during the Vietnam era stationed abroad a aircraft carrier. I was exposed to jet fuel fumes & jet exhaust fumes all the time, plus paint & solvent fumes from the storage area for them next to the shop that I worked in.
No one in my family has ever had parkinson disease.
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An interesting question
I had a severe head injury in 2005 and I question whether it was the beginning of the diagnosis. I had an inter cranial bleed and I was comatose for about two months
on top of that the stress of the past two years were I’m convinced was a cause of the diagnosis
i realised that I was suffering during 2020 and was diagnosed in 2022 lots of my symptoms were present but I didn’t know what the reason was.
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I think I have lived on a road that was sprayed with an herbicide that contains agent Orange. it was sprayed in the 1950s and I moved onto the road in 2002. But I have lived here for 20 years. I think it has gotten into my water.
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We worked as volunteer teachers in Vietnam 2000-2002 in an area which had been heavily contaminated with Agent Orange. I was diagnosed in 2018, but looking back I realise I had symptoms for some time. No idea if the pesticide was the cause, but there is no PD in my family. Then again, though, why is my husband OK? Is there a genetic predisposition which is exacerbated by contact with pesticides? Who knows!
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Not real sure about direct cause, but unfortunately, did experiment in a variety of drugs in college. Been completely off for decades, had a good career, and now retired. My onset was at age 64. I’ve heard that this could trigger PD years later. Would be interested if others would share their story, or others would rule out the link between the two.
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In 2014 I was hit by a large truck while in a crosswalk. Sustained a severe concussion. Over the next 4 years my PD symptoms emerged but it was only diagnosed three years ago. My neurologist believe that it is possible that the accident triggered my PD. But we will never know for sure. I have no family history of PD.
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Like Ken intimated earlier, I believe PD is triggered by both genetic and epigenetic causal factors.
GENETIC CONTRIBUTORS
On my maternal side, two of my mother’s sisters succumbed to PD. One is still with us. Nothing on my father’s side, except a prevalence of alcoholism and Alzheimer’s.
I can’t help but wonder if dementia-like diseases aren’t often comorbid with PD and Parkinsonism(s).
EPIGENETIC CONTRIBUTORS
As to the environmental triggers, many different chemicals, including those that come from exposure to neuro-inflammatory agent(s) can be related to my story. Exposure to glyphosate-based herbicides (GBHs) working as a Forester in the bush didn’t help my situation any – although it may not be as horrendous as Agent Orange exposure. Other more rare chemicals (chemicals for treating kangaroo skins for commercial purposes) may have contributed to my PD as well.
I also suffered 2nd and 3rd degree burns over 65-70% of my body at age 5 years (hospitalized for over a year in a burn unit) which may imply trauma might also be at the root of my diagnosis.
I could go on-and-on but I won’t bore you with any more “suspicions” I might hold to.
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I have thyroid cancer since 2002, and the treatment consists of surgery followed by radioactive iodine treatment. Later, the eye surgeon told me that he saw a lot of people who had thyroid treatments that had eye ducts that closed up. He said that the iodine closed up the small places in our bodies. I think that my liver disease, primary biliary cholangitis (the tiny ducts in the liver close up and bile can’t get out) was also closed up by the iodine treatments. I think PD might be another side effect from iodine treatments. None of the Drs are interested in this theory of mine.
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Interesting theory, Donna. It sounds like you’ve had your fair share of challenges. How are you doing today? Is your quality of life where you’d like it to be?
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My life is ok right now. I had high expectations for retired life, and now know that I won’t be doing all the hiking and travel. I have to rest way more than I thought. 1 day if activities means 1 day of rest. Hoping to increase stamina by doing more each day.
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I believe my PD was set off by the terrible trauma I experienced when a very serious (six digit) amount of money was embezzled by one of my employees.[Court case is still ongoing after 7 years]. This incident not only invited PD but made my diabetes Type 1, worse.
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Could someone tell me what is the point of this thread and the purpose of the question? If it is about “sharing’ it does not interest me and I do not court sympathy. If there is a genuine research purpose I can make a significant contribution but I am not doing it otherwise
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Hi Malcolm — please disregard my post.
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I was diagnosed with PD at age 62 but had symptoms since age 56. I recognized these symptoms because my maternal grandmother (1910-1977) was diagnosed with PD at age 57 and died at age 77 and my father (1928-2015) was diagnosed with PD at age 79 and died at age 87.
Seems a pretty strong likelihood that there is a genetic connection in my case!
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I used Roundup for many years to kill my poison ivy and bamboo. Five years ago I got Lymphoma. Luckily I survived this. Then last year I was diagnosed with Parkinson’s.
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My experienced a devastating attack of shingles. Within one year she was diagnosed with PD. I have found she gains considerable relief from hand tremors by using the Cala Trio bio modulation device. Excellent relief from tremors
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I started having arm tremors and was diagnosed by a neurologist. I went for a second opinion and had an MRI which showed a right basal ganglia infarction. Was told that can lead to Parkinson. I am not taking any meds because it seems that nobody really knows what is going on. I don’t really know where to go from here. Maybe someone else had the same experience. Would love to know
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Hi Claudia, how recently did you receive this diagnosis? I’m sorry to hear you’re in medical limbo waiting for next steps. I don’t have personal experience with a basal ganglia infarction but hopefully if someone else in this community does, they can share their experience with you.
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I believe my Parkinson’s was the result of exposure to PFAS chemicals at 2 military bases, Ft. Campbell, Kentucky and Ft. Sill, Oklahoma. Those bases, amongst a lot of others, since the 1950’s, used firefighting foam on the ground to train the military firefighters. The chemicals from the foam got into the drinking water. Not only do I have Parkinson’s, but I had Non-Hodgkin Lymphoma and Prostate Cancer. I have no family history of cancer or Parkinson’s, and always kept myself physically fit and watched my weight. So what are the odds I would have gotten 3 miserable diseases at random?
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I am quite certain that my young-onset PD is due to all of the exposure that I’ve had in my childhood through my mid-20s. After reading “Ending Parkinson’s Disease, a prescription for action” by Ray Dorsey, MD, Todd Sherer, PhD, Michael S. Okun, MD, and Bastiaan R. Bloem, MD, PhD [all world-renowned Parkinson’s researchers], I followed the book’s suggestion, wrote it up and sent it to [email protected]. Dr. Dorsey contacted me the next day to ask if they could potentially use my story in their next book. I’m pasting it below. Trichloroethylene exposure and to a lesser degree, glyphosate exposure have both been shown to be associated with the development of PD.
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I grew up in the small (population of less than 4,000) southwestern Minnesota town of Jackson, eight miles from the Iowa border, 80 miles from South Dakota. It’s corn and soybeans country, so I spent many weeks during my teenage summers detasseling corn and “spraying beans.” This meant riding in one of four seats in a “bean buggy” that had been attached to the front of a tractor, where I would sit, armed with a long-nozzled metal squirt-gun with a hose connected to a massive tank of Round-up (glyphosate). My job was to spray the weeds, not the soybean plants. Now, the instructions on the pesticide label state that it should not be sprayed in windy weather, but the farmers have only about a one-month window between when the soybean plants are grown large enough to be distinguished from the weeds and when they have grown so much that the leaves will help to camouflage the weeds. Also, he or she runs the risk that the plants’ stems will be crushed by the massive tractor wheels. So as you have probably already guessed, he or she will take advantage of any June day when it isn’t raining, or so muddy that the tractor will get stuck. June is typically the wettest month in southern Minnesota. It might be a good time to mention that in those days, it took 3 drops of Round-up to kill a weed, but only one drop to kill a soybean plant. I usually stripped down to my bathing suit and denim cut-offs, in order to work on my suntan. Might as well multitask, right? (This was in the 1970s, so we hadn’t heard of sunscreen yet.)
When I’d get home from the fields, my mom would immediately say, “Go take a shower! You reek of chemicals!” It had taken me years to be able to understand how she had been able to tell (smell) that it was me who had come in the front door, since she would be in the kitchen, making supper. No showers for me, though. I preferred baths — long ones (45-60 minutes). Unfortunately, for most of my youth, and long after, Jackson’s municipal water supply — the water that I drank and in which I soaked — was contaminated with trichloroethylene from a defunct circuit board plant.
In September 1988, I led a land-based crew of six on Greenpeace’s “Water for Life” tour. We participated in nonviolent direct actions from St. Louis, Missouri to Memphis, Tennessee as the international environmental group’s research vessel, Beluga, traveled down the Mississippi River. On this particular day, we intended to temporarily block the outfall pipe of the American Bottoms (I swear that I did not make up that name! Go ahead and Google it!) municipal wastewater (sewage) treatment plant to highlight use of the local St. Louis sewer system by toxic polluters — for example, Monsanto, Mallinckrodt Chemical, and others– a practice that occurs nationwide.
We were all outfitted in protective drysuits, but there were only five pairs of rubber boots for six people. As one of two women who were meant only to hold up the Greenpeace banner, well behind the pipe, I said that I would stick with my canvas Keds, which were kinda like loafers (no laces) but with rubber soles.
The men placed the plug with hydraulic jacks. Reporters, who’d been brought to the scene by inflatable boats, shot photos and videos but then wanted to get back to land to file their stories. The four men left, too. Then, the pent-up water pressure blew out the plug. My banner partner and I had no choice; we had to retrieve the plug, lest Greenpeace be accused of littering the river we were there to protect. So we waded into the neon yellow, chemical-smelling effluent, got the plug, and waited for our inflatable. Once in the boat, I became nauseous, tired and developed a headache. I had those symptoms for a week.
Some might say, “You were trespassing. You got what you deserve!” This is my response, “It is true; I was trespassing. But does anyone deserve to be poisoned? And what of the innocent people living downstream, whose communities’ water supplies come from the Mississippi?”
Five years later, while researching pesticides’ health effects for a presentation that I was going to give at a conference in Midland, Michigan, which is home to Dow Chemical Company (another notorious maker of PD-related pesticides, “Agent Orange,” ) I learned that my flu-like symptoms after the American Bottoms action matched exactly with those of acute pesticide poisoning! Ten years after the action (July 1998), I was diagnosed with young-onset Parkinson’s disease (YOPD) at age 34.
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