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    • #24404
      Ally
      Participant

      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? 

    • #24413
      Anonymous
      Inactive

      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.

      • #24422
        Ally
        Participant

        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

      • #24442

        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.

         

        • #24464
          Ally
          Participant

          Debbie, thank you for sharing your experience. All of that sounds incredibly difficult. How are you doing now?

      • #24451
        nancy
        Spectator

        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.

        • #24465
          Ally
          Participant

          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?

    • #24427
      Patricia Conner
      Participant

      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.

      • #24466
        Ally
        Participant

        Patricia, thank you for sharing your experience. You shared an interesting comment about adrenal injury. What does your doctor think?

    • #24443
      Ravindra Kango
      Participant

      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.

      • #24467
        Ally
        Participant

        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.

      • #24494
        Patricia Conner
        Participant

        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.

        • #24507
          Ally
          Participant

          Thank you for responding, Patricia. Are you interested in being part of any research into this idea?

    • #24447
      Ken Aidekman
      Participant

      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.

      • #24468
        Ally
        Participant

        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!

        • #25281
          Jon Busch
          Participant

          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.

      • #24513
        Gauri
        Participant

        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.

    • #24445
      Diana
      Participant

      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

      • #24469
        Ally
        Participant

        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?

        • #25200
          Alan M
          Participant

          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/

    • #24492
      Dave Berry
      Participant

      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).

      • #24748
        Ally
        Participant

        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?

    • #25159

      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.

    • #25160

      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.

    • #25166
      Mr. Morris Colin
      Participant

      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.

    • #25167
      Pam Randles
      Participant

      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.

    • #25171
      Wobblygirl
      Participant

      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!

    • #25173
      Bill
      Participant

      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.

    • #25181
      C Morts
      Participant

      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.

    • #25185
      Alan M
      Participant

      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.

       

    • #25194
      Donna K
      Participant

      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.

      • #25204
        Mary Beth Skylis
        Keymaster

        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?

        • #25245
          Donna K
          Participant

          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.

    • #25314
      ibrahim h caglayan
      Participant

      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.

    • #25341
      Malcolm Swift
      Participant

      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

    • #25346
      Crissy
      Participant

      Hi Malcolm — please disregard my post.

    • #25375
      McDonald E Rominger
      Participant

      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!

    • #25447
      Dick Boynton
      Participant

      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.

    • #25452
      Ron carlson
      Participant

      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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