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    • #19006
      Mary Beth Skylis
      Moderator

      Science still can’t exactly say why some people develop Parkinsons and others don’t. But we’re starting to notice trends. In some cases, environmental factors seem to play a part in the development of the disease. In others, it seems like there could be a genetic predisposition (although there’s some debate about this idea). Do you have any theories about why you have Parkinsons?

    • #19328
      Toni Shapiro
      Participant

      Boy I wish I knew the answer as to where this came from in my case. There doesn’t appear to be a genetic predisposition.

      I spent the first 24 years of my life in an area that has been noted to have a high percentage of persons with PD.  At the time I lived there it was very industrial but since that time the steel mills have closed. I am thinking that could be it.

      I also wonder if I abused by body to the point of damaged, as symptoms that I now know are related to PD, began just after I went overboard with training for the Victoria marathon.  Within a period of just a few months I finished a half marathon and then completed a full marathon without ever even trying a 10k in previous years.  My friend and I would fast walk an average of 12-15 miles almost every day and to make sure we could finish the 26 miles, a week or two  before the marathon we did 26 miles.  I know, I know, that was incredibly stupid and not how you train for an event. A short time after I developed many of my PD symptoms.  I couldn’t lift myself out of bed or get out of a chair, my balance was off, I’d shuffle and I’d walk into walls, I was in a lot of pain, my hands would shake and I had pins and needles and my brain was off.  The neurologist at the time couldn’t find a cause but after a number of months I got better but I was never  the same.  Exercising moderately now has been helpful to me although if I do too much it takes me days to recover. I wonder if this played a part in development of my PD.

       

    • #19335
      Toni Shapiro
      Participant

      Hi Mary Beth,

      Thanks for this post as it has brought up things for me that I haven’t thought of for a long time.  I’d like to add to my above post concerning my excessive physical training because I am thinking that the combination of my early exposure to pollutants and the over the top training are most likely the reason I have PD today. Although I 100% agree that exercise is very, very important for health, particularly if you have PD, I do know that it is a fact that excessive endurance exercise increases oxygen consumption that increases the production of free radicals and causes oxidative damage to muscles and other tissues, membranes and genes, DNA and leads to a state of chronic, systemic inflammation.  Common exercise can actually can build the antioxidant free radical defense system, but intense and high volume exercise overwhelms these defenses and cause significant free radical damage. The Oxidative stress from from free radicals damages cellular proteins. That chronic, systemic  inflammation is implicated in diseases such as cancer, heart disease,strokes, MS, Alzheimer’s, PARKINSONS, premature aging and in most debilitating, degenerative conditions. The more I think of this the more I am convinced this is the reason.

    • #19338
      Carolyn Huggett
      Participant

      I have been treated with Chinese medicine for years and with amazing results. However my symptoms progress because there is no known cure just a delay of symptoms. TCM looks at the body in a completely different way and because we all have different Chi  deficiencies or excesses, in some cases they are pathological. Looking back on my life and treatment with TCM, I can see a definite  pattern has developed. My symptoms have been slowly progressing but are in a holding pattern at the moment. It is not possible for me to compare myself with someone who is receiving western treatments. My TCM doctor treats my whole body for many things weekly and these things are part of his original diagnosis but if they change then he can make corrections in treatment. He doesn’t look at one thing but my body as a whole energy system and how my Chi energy is functioning. I would say that we get PD symptoms (not recognized in TCM terms) when the deficiencies reach a certain point. External influences such as pesticides  and viruses all impact our Chi energy. Our bodies are all very unique from the start, genetically, but historically (things that have happened to us on our journey) and the way we use and care for our own bodies play an enormous part. Tai Chi plays a great part in my life and has done for over 20 years. It has not stopped me from arriving at this point but without it I might have arrived sooner and in a worse condition. I will never know for sure.

    • #19341
      Chris Clark
      Participant

      I basically self diagnosed my PD 10 years ago. I was having symptoms of my toes on right foot cramping when jog but podiatrist and my primary car DR. could not find a reason. Then one day at work I notice my right arm not moving when I walked. This seemed like something that was a very bad sign to me, right leg right arm? So I started googling the common neurology diseases. I opened up the Michel J Fox sight and one of there first expected causes was agricultural pesticide exposure.  That was my oh crap! moment. See, I had spent the last 30 years as a lab tech with Dupont developing new insecticides. I have test 10’s of thousands of experimantal insecticides in thousands of experiments, 2-3 experiments every week for 30 years!

       

    • #19339
      Rob Stehlin
      Participant

      Toni – don’t sweat it. If that was the case, we would see a much larger number of marathoners with Parkinson’s.  I am an endurance runner and have prodromol PD, but do not have any science to connect it to my passion and love for running.  I do though have connections that could have me in my current situation and I would like to hear from you and Mary Beth on this.

      First, I was diagnoised with prodromal PD via sleep study and confirmation I have iRBD about 9 months ago.  Has anyone been diagnoised with iRBD (REM Sleep Behavior Disorder)?  Has anyone been tested for toxic chemicals in urine?  Has anyone had their gut microbiome sequenced?  Has anyone been tested for organic acids, heavy metals, glyphosate and SCFA (short chain fatty acids)?

      Once I was diagnoised and given orders to go home and wait as they had no clue why I was suffering from RBD and inevitable PD, I got to work.  In every test above I have extreamly high markers in different areas with some organic acids being 5 times over normal levels.  I have extreamly high levels of some specific neurotoxins.  I have gut dysbiosis – my good bugs in my belly are low and my bad bugs are high.  I have little to no butyrate (SCFA) which is critical for the tight junctions in my gut (I have leaky gut).  It is even the reason we stink (I sweat but have no body odor) None of the above test were ordered by my doctor nor does any study currently published compare patients with PD or prodromal PD and the above test.  I find it to be the crazyist situation possible.

      I am in the development of my own therapy.  I have successfully been able to reduce the intensity of my dreams by at least 75% while reducing the frequency by 25% (improving each month).  I have done all of this by diet alone – little to no lectins.  My next phase is to correct the gut dysbiosis and this will be done with probiotics matched with my gut sequence.  Plus I run, fast, sauna, and exercise.

      I would like to know if anyone else is having any success with diet, fasting or exercise.  I am always willing to share my resutls and resources.  I will be share everything on my upcoming website   whyrbd.com

      • #22393
        Alan M
        Participant

        Kia Ora, Rob:

        My neurologist called what I have REM-SBD sleep disorder, rapid eye movement.  I only wish I could reduce the intensity and activity in my dream life.  I’ve treated sleep apnea using a CPAP machine for the past 15 years.  Maybe that’s when prodromal PD started for me?

        I had two aunts on my mother’s side diagnosed with PD.  Is genetics a component?

        • #22396
          Beth T Browne
          Participant

          Alan,

          The Michael J Fox Foundation offered me an opportunity to do a DNA so I took it, as I did not know who my bio father was until I was 80. I did not know anyone when I was growing up in my mother’s family that had Parkinson’s. I did do the DNA, and nothing on my father’s side. They say old age can cause Parkinson’s, so guess that is my answer.

        • #22397
          Rob Stehlin
          Participant

          Beth so sad to hear MJFF would tell you Parkinson’s is the result of old age.  I ask one question – how old was MJ Fox when he contracted PD?  Not old.  PD is the combination of multiple factors that when combined create the perfect storm.  This explains why not everyone comes down with PD if they have one symptom or the other.  Not every old person has PD so it must be a another variable that is causing the body damage. I am working as fast as possible to see what interventions can be taken to help others stop the progressive damage before it manifest into dementia and motor issues.

    • #19344
      IngridG
      Participant

      My theory is that is was caused by an overload of mercury, viruses and life-long Hypoglycemia. In my 20s I was injected several times with mercurial diuretics to loose weight, which I did not loose. The side effect of these injections were 30 cavities that were filled with amalgams, 50/50 mercury.

      Then, I was exposed to the Epstein-Barr virus, Shingles, Rickettsia (Human Ehrlichiosis),resulting in CFIDS/ME, MCS, etc.

      Glucose matabolism is very important for any brain and Neurotransmitters, so severe Hypoglycemia since age 9 has contributed also, I believe.

      I have just been diagnosed with Oxalate Cristal disease, which can have profound problems in the body, though I, and many others, don’t have kidney stones, but the Oxalate accumulates in the joints, muscles, organs and probably in the brain also. The best information is on Sally K. Norton’s website, though she does not write about Parkinson’s, she has devoted her life to make this known. Many people, like myself, have increased their vitamin C consumption because of Covid19 and noticed increased pain in their feet, joints etc. that is how I found out. I ate a “very healthy” diet for many years with lots of greens, nuts, chocolate, Kiwis, celery juice, etc, all of these foods are very high in Oxalates. I wonder has anyone done research on oxalate effect on Parkinson’s ??? It certainly affects the stiffness in my muscles, pain and balance. I do not take any medications, as they never agreed with me, but plenty of alternatives.

      I believe that is most important to eat a diet free of chemicals, GMO, gluten and sugar. Please let me know what you think about my theory, blessings, Ingrid

    • #19345
      Robyn
      Participant

      I’m following the advice of the Parkinson’s Recovery Project (pdrecovery.org). Their theory is that people with Parkinson’s have got themselves stuck in thanatosis (near death mode), which is uniquely identified by aberrant flowing chi.

    • #19347
      Sharon Vander Zyl
      Participant

      My husband was recently diagnosed and he had a very severe case of Lyme Disease back in 2012.  We have heard that Lyme can become chronic (though there is great controversy about this) and can “masquerade” as other things like Parkinson’s so we are looking into that.  He also flew a spray plane for several years and was exposed to various herbicides.  So we are wondering about that.

      • #22394
        Alan M
        Participant

        I have a friend in Canada who claims she might have ‘contracted’  PD via chronic Lyme Disease.  I had never even heard  of this before she mentioned it to me…

    • #19349
      Phil Gattis
      Participant

      I spent ~60 days consecutive at Camp Geiger, MCB Camp Lejeune NC during the time period of what is arguably our country’s worst water pollution scandal.  PD is “presumptive” for this exposure with as little as 30 nonconsecutive days, meaning that it was relatively easy to obtain VA disability benefit.  In the years following that exposure, I also sprayed various coatings with organic solvents and foam with free isocyanate.  All of this is bad stuff, and I didn’t protect myself as well as I should have.

      My mother had PD, & it has appeared elsewhere in family trees with my last name, so there may be a genetic link.

      • #22926
        John Citron
        Participant

        Phil,

        My uncle was stationed there in the 50’s and 60s. He ended up with colon, prostate, and lung cancer from the dry-cleaning fluid dumped into the water. He lived in the housing right behind the cleaners.

        I’m surprised he didn’t end up with other things besides that.

    • #19351
      Rob Stehlin
      Participant

      Ingrid,  I have been doing the same, but I have restricted my lectins because rescent research has confirmed the gut brain connection and the vagal nerve is stimulated by lectins as proven the the transport of paraquat from ENS to mid brain or the lack there of when a patient has undergone a vagalotamy.  It has helped my iRBD which is just prodromal PD, so I am sure it would work in diagnoised PD.  Best is to follow Dr Gundry diet.  Definately working for me.  I eat mostly plans and fish.  Besides reducing or eliminating lectins (I pressure cook lectin containing roots and tuber and eat raw cruciferous vegetables) I also watch the oxilate levels to keep my joints working well.  I log how my joints feel daily.

      What is apparent is we all have exposure to enviromental toxins.  What I would like to know for my research is how many in this chain has been tested for toxic chemicals, organic acids, heavy metals, SCFA, glyphosate, gut biome sequencing, and iRBD.

    • #19358
      Toni Shapiro
      Participant

      Hi Rob,

      I havn’t had my toxin levels tested but I want to have it done and will look around for the best way to get it done in my area. Thanks for mentioning it. It reminded me that it is something I wanted to have done.

      Yes I do have REM sleep Disorder. I am on CPAP which has helped me.  I also have gut problems so I am interested in the testing and the diet you mention.

      I posted about my excessive exercise and how research shows that it can cause free radical damage to muscles, tissue, membranes, etc. (I found this very interesting when I first read about it).  Anyway, unlike a distance runner or athlete I went from the very minimum of exercise immediately into full on attack.  In effect, assaulting myself and not allowing my body rest for about a 5 month period.  That is why I am suspicious.  If I had been a runner or did regular work outs I wouldn’t have thought about it for the reasons you mentioned. Going at it the way I did, I still can’t believe I was capable of it especially with all the pain, is why I wonder.

       

    • #19359
      Phil Gattis
      Participant

      trying to unsubscribe

    • #19360
      Rob Stehlin
      Participant

      Toni,

      Here are my recommendations:   Toxic Chemicals, Organic Acids, Mold – Great Plains Labratories  (you can find online, you can pay cash, you just need an RX from you doctor –  I even think they have teledocs that can help.   Gut Microbiome sequencing.  I have used 4  Biome, Viome, American Gut Project & Sun Genomics    American should be the best but they are taking over 7 months to process because of Covid.  Sun and Biome second best.

      I was also diagnoised with mild central apnea but not an issue.  Also I have a long distance runner and I have found a lot or research that says endurance running could be beneficial to neurons and brain chemicals.  Like I said, don’t sweat the running until you run all the other test to see what is out of balance.  In the next week or so, I will be sharing all on my project website whyRBD.com   Hopefully this will help others find testing that could start to find the “why” behind our disorder.  I have not found one research paper that evaluated the above mentioned test with prodromal symptoms.  I think it is the biggest form of malpractice possible – not in the clinical setting and not in the research setting is anyone connecting the dots:  Gut dysbiosis – toxin levels.  I sure hope someone proves me wrong.

       

    • #19370
      Chris
      Participant

      I was diagnosed a couple of years ago when I was 42 with YOPD.  I always tell everyone that I definitely inherited it from my father’s side.  That’s because I found out that my grandmother’s maiden name was Parkinson, for real.  A little humor about this disease does help at times.

    • #19371
      Daniel Best
      Participant

      My dad had hernias, was bald, and developed Parkinsons around age 60.  I had hernias, am bald, and developed Parkinsons at age 59.  We can drive ourselves crazy wondering what exposures might have caused ourselves to get this, but I’m a big believer in the destiny of our genes.

    • #19383
      Jim Browne
      Participant

      I have a GBA mutation, l444p, that increases my risk of getting PD by 10 times and was heavily  exposed to trichloroethylene, a solvent linked in a few studies to increased PD risk.

    • #19390
      Fran
      Participant

      Robyn did you ever take any Parkinson’s medication before you started following Parkinsons recovery?

      My husband has been on a very low dose of sinemet and we have been exploring other modalities of treatment.  On pdrecovery.org he says his protocol won’t work in the same as if someone has ever taken medication for more then three weeks.

       

      wondering if you have any knowledge about this?

       

      thanks so much

       

      • #22406
        Alan M
        Participant

        Hey Fran… can I ask you something?

        Dr. Hadlock is quoted as saying, ” Most western-medicine research has consistently ignored the brain scan data showing elevated dopamine levels in certain areas of the brain in people with Parkinson’s, possibly because it conflicts with the long-disproved 1960s theory of “dead dopamine cells” and with the Parkinson’s theory promoted by the pharmaceutical industry.”

        Have you experienced, or do you know someone personally who has experienced, Dr. Hadlocks treatment of “channel qi”?  Do you believe her claims of curing PD?  In 100’s of patients?  Does her book sound like a form of Reiki?

        Thanks for “listening”.  Alan

        • #22409
          Robert Li
          Participant

          Alan, if taking levadopa helps, then that’s a good sign that at least some of your dopamine-producing cells are working. Levadopa, or L-dopa is normally produced by the body from tyrosine:

          <b>Tyrosine hydroxylase</b> or <b>tyrosine 3-monooxygenase</b> is the enzyme responsible for catalyzing the conversion of the amino acid <small>L</small>-tyrosine to <small>L</small>-3,4-dihydroxyphenylalanine (<small>L</small>-DOPA).<sup id=”cite_ref-pmid8638482_5-0″ class=”reference”>[5]</sup><sup id=”cite_ref-pmid8822146_6-0″ class=”reference”>[6]</sup> It does so using molecular oxygen (O<sub>2</sub>), as well as iron (Fe<sup>2+</sup>) and tetrahydrobiopterin as cofactors.  (Wikipedia)

          If you have dysbiosis, vitamin D deficiency, or iron deficiency, it is much harder for your body to produce L-dopa.  So you might want to look into those.

      • #22900
        Patricia Conner
        Participant

        I  had an accident and needed cervical surgery.  My walking was badterwards.  As I was getting better, my Parkinson started.  The first Dr was American and gave me lots of pills that made me feel worse.  I am French living in an American environment.  French usually run out the door if surgery or medication are mentioned.  The second dr was Mexican S LATIN and similar to the French. He took all the pills away except Dopamine and a mild anti depressent. .  We French see Parkinson differently as we have had it 2,000 yrs  befor dopimine  was even known. It was called the shaking disease and generally early onset as we died earlier .    2,000 yrs ago til now, excercise  and diet were the way we treated the shaking disease. . We knew then that the excercise did not work if it was something of a habit.  it had to NOT be like what you do everyday.   It had to be 15 minutes twice a day of radical musical dance to the Gods and you were then ok for most of the day.  They knew habit played a role.  I took the French way with swimming three times a week, dancing and excercising to rod stewart or others upon waking and in the afternoon, and then I was fine for the other hours .We knew voice was an issue so I read French  or an article outloud with exaggeration and only 1 dopamine pill per day.     I am proud of the work that the Americans do as nowdays we can communicate both efforts..  But the medicine the american give at early onset and too much,  defies long held historical thoughts that  “little is better”. If we were able to know this before medicine,  than some of it should continue.  That some of it is “learning to live with it” via excercise, good diet, sense of humor,  etc.”   Parkinson is not the worst of the sickness especially when  one cure allows you to dance Michael Jackson, Elvis etc.   Also, if you start via medicine, you can not go back as the body adaptts and then  needs it.   But you can not just increase it.  We knew since.2,000 ago.   ANSWER:  Learn to live with it  with minimal medicine.  If it gets worse, increase excercise and than you have the the medicine there as the backup.   My Parkinson at 75 is like a women who is 75.  Ecept, I dance, and noboby can stop me.  We all laugh and they dance with me.  My real problem are my 75 yrs old  knees, they do not want to participate.    In reality, almost anyone who is older must  do excercises, diet, social stuff.  I have learnt that I will  never know the why but have learnt the how.

    • #19413
      Roy
      Participant

      I believe that exposure to chemicals has caused me to develop PD. I worked on a Navy ship in dry cleaning during the Vietnam War. After that, I worked in a wastewater treatment plant, a R&D lab for insecticides, worked at and then had a lawn service that included insecticide/herbicide  spraying, and worked for about 20 years in the Inside Garden departments at 2 large Home Improvement stores. I was tested for heavy metals and other toxins when going through my diagnostic period by a super neurologist at the VA. She was sure after seeing the results that chemical exposure was the cause. I know of no one in my family tree that had PD. I pray it isn’t genetic, because I don’t want my kids to have PD.

    • #19469
      Mary Beth Skylis
      Moderator

      Toni, Wow! Thank you for sharing your ideas. I, myself, am an athlete. And I tend to err on the side of TOO much exercise. I hadn’t thought about the potentially negative impacts of exercise in relation to Parkinsons. For how many years did you train for events like marathons?

    • #19470
      Mary Beth Skylis
      Moderator

      Rob, thank you for your thoughts. I take comfort in them. As a long-distance backpacker, I often put myself through tough challenges. And I’ve thought about the damage I’m doing to my joints. It’s probably good to be thinking about other potential damage.

      My Dad (diagnosed in 2013) sees an herbalist every once in a while. And this herbalist seems to think that his PD diagnosis is related to a build up of toxins. He has alot of heavy metals in his system. And they’re trying to cleanse them. My Dad hasn’t reported noticing a difference. Additionally, he has suffered from Ulcerative Colitis for the past 30 years, and I’ve always wondered if not having a colon threw off a bunch of other parts of his system. So, I find your thoughts about your gut particularly interesting.

    • #19483
      Beth
      Participant

      I wondered if the Parkinson’s disease could have anything to do with a gut surgery (where my ileum was removed)I had had which caused me to become deficient in vitamin B-12. I remember feeling exhausted most of the time and several years later I began having having PD symptoms. And unfortunately, my PD went undiagnosed for a couple of years.

    • #19485
      Rob Stehlin
      Participant

      Beth – Interesting, definately could be cause of Vit B12 defeciency.  Did or have you had any other test maybe for SCFA (short chain fatty acids), toxins, organic acids, heavy metals, or pestisides?  Did you have iRBD (REM Sleep Behavior Disorder) prior to PD diagnosis or after?  There is always a “why” to everything, we just have to keep asking and keep searching. My doctor never asked to run one test once I was diagnoised with pre-parkinson’s.  Every test I have done, was under my instructions to my doctor.  My doctor was even suprised what I was able to uncover as a possible “why”.   The more we learn from “why” the more we can share with others who have pre-parkinson’s and in their quest to stop the progression.  Thanks for sharing

    • #19563
      Anthony
      Participant

      Hi everyone,

      I have been ill with BP for three years, although the diagnosis was made in 2020. It was like a bolt from the blue. It didn’t look like I had a genetic predisposition. Until the age of 59 I was a strong person, I liked to walk (10 or more km on occasion). Then I subtracted that exposure to pesticides earlier could add to BP and I thought that I might have had contact with garden pesticides as a child. Then I thought that I had a history of constipation, so I think that my gut microbe is broken. In general, the diagnosis of PD looks like a sentence – nothing really helps …

    • #19566
      Rob
      Participant

      Greetings All,

      I have a few seemingly random points that I would like to contribute, if I may:

      – Of all of the people I have met or corresponded with, who would place themselves in the Young Onset group, None were aware of any relatives who had PD.

      – My first full-time job involved spraying herbicides, painting, welding etc. Each day at 4:30, I had to take a break before driving my car home, because I felt…  well… exactly as I do this very minute — except back then, the feeling eventually went away.

      – I have heard speculation that PD may be a blending of 2 other diseases. I believe that to be an item worth consideration, because I have 2 groups of symptoms that are each distinctly unique. There is a very slight margin of overlap but more often than not, they present quite differently.

      – In my opinion, the answer lies in the realm of autoimmune disorders, specifically how the immune system interacts with our toxic manufactured planet, and how it adapts to bio-regional micro-cultures. This is a growing field of study because with just one fill-in-the-blank, we can explain so many unanswered questions.  Everything we know so far about unseen villans, seems to fall into place when we consider their environmental context.

      – On that note, expect a flood of class action suites in the 2020s and beyond.

    • #19570
      Beth T Browne
      Participant

      At 83 I found out I have Parkinson’s.  Learning symptoms, I think I had it a year sooner.  I discovered at 80, my father was not really my father.  I never saw him much as my parents divorced when I was 2.  When I did a DNA with Ancesory, and later with My Heritage, I discovered I was 49% Jewish.  I thought I was 1/4 Cherokee, since the man I thought was my father was 50%.  I have tried to find out things about my real father, but everyone is dead.  I did find a 2nd cousin, but she did not know anything about him.  So, now I wonder if PD ran in the Jewish side of the family.  I considered doing a 23& Me, which might tell me something.  No one on my mother’s side that I knew of has had this disease.  I have always been a vitamin taker, and never showed any problems when I had blood tests, until last year, when my potassium was very low.  Now I wonder about environment.

    • #19573
      Jim Browne
      Participant

      Unlike most cases of Parkinson’s, the probable root cause of my PD has been established by numerous scientific studies. I have a GBA mutation with the variation, L444P. This increased my odds of getting PD by 10 to 20 times. In my family there enough present day relatives with PD that I can trace  the mutation back 200 years by triangulation.

      Even with these genetic odds the majority of people with this mutation don’t get PD.  It appears that there has to be an environmental trigger to set the disease off. As a young man in my 20’s I was exposed very heavily to chlorinated organics, in particular trichloroethylene. At the time TCE was the new “safe” solvent to replace chloroform and hexachlorobenzene and little was done to avoid exposure. Limited scientific studies have indicated that heavy exposure to TCE increases the odds of getting PD by 6 to 10 times. My advice to anyone with multiple relatives with PD to avoid all exposures to any industrial or agricultural chemicals. This includes household garden chemicals.

      Although there is no data I know of,  I don’t buy that maraton running causes PD. Before PD wrecked my ability to run I had been a marathon runner for 37 years. The mutation I have normally results in early onset PD. My onset was 10 years past this. I think it is possible the delay was from years of hard exercise. In any case while exercise hasn’t been proved to slow or stop PD, it has been proved to improve the quality of life. Heavy exercise has greatly improved my motor symptoms.

    • #19576
      Martin Evans
      Participant

      Being diagnosed with Parkinson’s at a relatively young age, 46 and not having a family history of  it, I was slightly bemused to say the least.

      During my role as Principal Health & Safety Rep for British Airways cabin crew I became aware of a possible explanation.

      That is being poisoned by toxic chemicals within the cabin air environment of commercial jet aircraft on a daily basis. I worked as cabin crew for 36 years until being asked to leave on medical grounds.

      The cabin air all aircraft, except the 787, enters the air conditioning system by the process of bleed air from the engines. At extreme temperatures the oil from the engines can produce fumes which then enter the cabin. Within the components of the engine oil is TCP, Tricresylphosphate, a known volatile compound  which can affect the central nervous system.

      I am a Board member of the GCAQE (Global Cabin Air Quality Executive) and we are contact with expert toxicologists who agree that such poisons can cross the blood brain barrier and affect the brain.

      This of course is only one reason and is not applicable to all Parkinson’s cases.  But one that leaves me with  a bitter taste in my mouth after a long and enjoyable career.

      Without trying to be a conspiracy theorist it is strange that the authorities knew about this since the 1950’s. It is the new Asbestos scenario.

      I have much more information for those who are interested.

       

    • #19586
      Mary Beth Skylis
      Moderator

      Wow, Martin! That’s horrifying and shocking, all at once! I’m definitely interested. Do you think that this is something that has the capacity to impact a lot of airline employees? And how might it impact the occasional flyer?

    • #19587
      Mary Beth Skylis
      Moderator

      Jim – I find your thoughts about running to be particularly interesting. I have hypothyroidism and I’ve been told that endurance sports can negatively impact my health. But I’ve always fought this idea. Do you think that continuously stressing our bodies out could heighten our symptoms? I feel that running and backpacking have improved my health, but it does tire me out.

      • #22407
        Rob Stehlin
        Participant

        Beth,  I really to not buy into the notion that athletics has a negative impact or a cause.  PD is more likely a combination of variables that knocks the body out of homeostasis.  We just have to find the variables and correct for them.  Most all the current research looks a single variables and never a combination of variables that could start the cascade of PD.

    • #19619
      Joe Ferguson
      Participant

      In my family, there are five of us first cousins and we all lived on my grandads SE Virginia  farm, bought in 1950s. We were born in the 60s and 70s. The city dump was across the road from our farm. In the 80s, the city notified us our homes had to be disconnected from our deep wells. We had to go on city water. I wonder why? Today, only my brother is disease free to our knowledge. Between us other four, we have PD, Crohns, MS, MCI, and something else I can’t remember. Is this enough to investigate? We think the water underground was contaminated like Camp Lejeune!

    • #19623
      Cheryl Hughes
      Participant

      Hubby has Parkinson’s as well as a huge percentage of people we worked with during the 1970’s. We wish someone would investigate the environmental conditions of that location, as we suspect toxic chemicals in the soil and water. Of the almost 100 people who worked there, 15 that we are aware of were later diagnosed with Parkinson’s.

    • #19625
      Amelie
      Participant

      Hi everybody,

      My husband was a technician of photocopy machines and has been in constant contact with the toner.  We thought it could be one of the reasons, but not sure at all.   Any idea from your side?

    • #19626
      IngridG
      Participant

      Amelie, it could be a combination of the toners, but mostly about the very strong EMFs (electro-magnetic fields) of the copy machines. Try to go close to a copy machine with a tri-meter to see how potent they are. Also cell phones, computers, WiFis, etc. keep away from all of them.

    • #19627
      Rob
      Participant

      I believe that the issue with toner, is it’s state of matter. It appears to be a messy liquid, but in fact it it more resembles ultra fine dust. It hangs in the air for extended periods of time and creates a host of respiratory illnesses.  Once in the lungs, it then works its way through various organs,  the brain, and the central nervous system. I know this dust does contain metals, but I am not sure which. There are also plastic and silica particles that are associated with fibreglass production. (polystyrene etc).

      As I look back at this thread, I am stuck by the magnitude of the connection between toxins and illness. When I attended university in the early 1980s, we predicted a huge increase in toxin related illness early in the next century. Like global warming, it’s here.

      I am not a lawyer, nor am I motivated by financial gain (except for others), but this leaves me wondering: Should we as parents and grandparents be speaking out? If nothing else, I would like to see the makers of toxic products be accountable for cleanup, containment, education, and strategies for future use or elimination.

      I am not sure how, where or if to start. The first challenge, is the fact that members of this forum come from places all over the globe. Toxins know no borders, but laws and legislation are quite nation specific.

      Any thoughts?

    • #19628
      Cathy R
      Participant

      Hello, I am new to this site but find this question very interesting. Sometimes I’m still in denial that I have Parkinson’s disease. How did I get this?  How does anyone get this? I am 60 years old and was diagnosed 7 years ago. I am/was very active, biking, skiing, group fitness. No tremor, I did not fit the profile.

      I had severe sinus infections in my early 30’s and at one point was on an extended prescription of strong antibiotics. Shortly after I developed rectal bleeding after running or other strenuous exercise. At age 34 I had a colonoscopy and everything was normal. I then got pregnant with my 3rd child and the bleeding stopped. My gastroenterologist thought this might happen due to hormonal changes. I can’t help but wonder if the changes in my gut biome at that time may have been the beginning of my PD.

      Does anyone have thoughts on this?

      • #20889
        Robert Li
        Participant

        Cathy, recent research is showing gut microbiota disturbances due to antibiotics are a common cause of many systemic diseases.  Probiotics can help, but not all probiotics can make it through stomach acids.  I think there is a lot of research forthcoming this year and next.

        • #22493
          Mary Beth Skylis
          Moderator

          Wow, Robert! I haven’t heard about that connection yet. But it makes sense. Is this a relatively new finding?

    • #19629

      My husband was diagnosed two years ago with PD.  He spent 35 years as a professional firefighter and, during this time, was involved in several major fires including industrial blazes.  When he first got on the department the equipment was inferior to what is being used today.  The stats show that firefighters are diagnosed with PD at a rate 10x the average so we highly suspect this may be the root cause of his disease.  So far, he experiences left-hand tremors (his dominant hand), slowness, tiredness, minor balance issues, occasional night dreams.  Still not on medication and waiting until necessary as to delay any side-effects which seem worse than the disease by some accounts.

       

    • #19631
      Mary Beth Skylis
      Moderator

      My Dad thinks that his diagnosis might have something to do with toxins too. He has been seeing a holistic doctor for the past three years. This Doctor seems to think that my Dad’s system is overloaded with heavy metals. They’re in the process of detoxing him. And he recently told me that he is beginning to regain his sense of smell. I wonder, if toxins are related to PD, if there’s a way to reverse the damage?

    • #19636
      Mary Beth Skylis
      Moderator

      Mary/John – you’re not the first person I’ve heard make the parallel between firefighting and Parkinson’s. Do you know if there are any studies that are being conducted around this topic?

      • #20888
        Robert Li
        Participant

        Mary Beth,

        Wildfires contain a small amount of manganese, and industrial / battery fires can contain A LOT.  Airborne manganese increases risk of PD.  Research of people living near old ferromanganese plants shows increased PD incidence.  Most people don’t get PD though because they can detox inhaled manganese quickly enough, but some can’t.

        Vitamin D helps detox.  However if one has liver cirrhosis, detox of manganese is highly impaired and even normal amounts of manganese in food can raise blood levels from normal (homeostatic) to toxic levels.  Also, if the liver is loaded with heavy metals, manganese detox can be impaired.

    • #19642
      Rob Stehlin
      Participant

      I would like to ask everyone on this theard one question:  Have you been tested for toxins?   Chemical, Organic Acid, Mold, Pesticides, Heavy Metals, Mercury etc?  We are all talking about possible exposure and symptoms, but without knowing levels in body currently or prior, we are unableto determine root cause.  I have been diagnoised with iRBD and multiple other symptoms of Pre-Parkinson’s and researching the root cause of these conditions that are precursors to PD.  There is a connection, but the data is not in the research.  Researchers are not looking at a symptom / toxin corrolation.  I am working on a survey that will help us collect the data needed to start to make the connections everyone is discussing.  If you have not been tested go to Great Plains Labs and get tested.  They have multiple test and not always cheap but our health and life depends on knowing the cause of our disease.  The goal of my research is not just to find the connection between toxins and PD, but therapies that can stop the progression and restore the body back to homeostasis.

      • #22927
        John Citron
        Participant

        I was when I went for a second opinion. This neurologist, my current one, tested me for heavy metals, and other toxic exposures. My results came back normal or within the “normal range” on all the tests.

    • #19651
      James
      Participant

      I believe mine was due to working with Hazardous Chemicals for the Air Force after i got out of the Marines.

      We used to work with a chemical called Phenol (i believe is the correct spelling).. and we would spray these airplanes down with this chemical while wearing chemical suits and gloves etc.. However, hooked up to an air hose, and extensive protection equipment, the Phenol would burn through your outerwear, or gloves etc.. and burn your skin before you knew that it had leaked through.   I still have light marks on my hands where it had burned my skin.. I believe i remember being told that once this chemical gets into the human body, it doesn’t leave but can cause neurological damage and possibly damage the liver.

      I swore i would never work in any job that would cause harm to my body or health, but i needed the job badly.   I decided to resign after about a year and half, and  they ended up replacing that chemical with a different one that was supposedly less toxic.. Just after i quit.   So.. I’ve been dealing with Parkinson’s on my own for over 15 years, with no help , no medical insurance.   I had gone to the VA for help and without any blood tests or physical examinations being done, i was told by the doctor that “They didn’t think there was anything wrong with me, and that she was forwarding me to the Psychiatrist .  I was devasted.   Still have no job with health insurance.. I find that Valium can help control the tremors.. or xanax but with the Government threatening doctors about prescribing these simple meds, i’m just in a ditch.  It’s definitely taken a toll on my faith.  I’ve lost faith in God and everything else good.

    • #19662
      Lyn Richards
      Participant

      Well, I’m aware of multiple factors in my life that are associated with PD. I lived for 28 years in a rural setting where our drinking water was from a well. Although there was not much agricultural activity in the area (some small hayfields, likely not fertilized or sprayed), the pump in the well dated from about 1977 or 1978, and may have been leaking PCBs by the time I left in 2010. A year before my first episode of RBD our house was treated for carpenter ants with permethrin, and the pest management fellow said that he gave it a heavy dose. Indeed, we could see white powder leaking out of the ceilings in some places for years, but we had been reassured it was safe.  Over the course of my life I’ve had multiple bumps on the head — at least one & probably three of these caused concussion symptoms. And I experienced considerable sleep deprivation off and on through adulthood due to producing papers during years of undergrad and grad programs, working long hours, writing long reports at night and of course menopause. Oh, and there are redheads in my family and I used to have a little reddish quality to my hair — the ginger gene.

    • #19663
      Rob Stehlin
      Participant

      Lyn,  have you been tested for toxins?  Are you currently diagnoiosed with PD or Pre-PD?  If you were diagnoised with PD how long after you were diagnoised with RBD?  Have you had your gut sequenced?

    • #19675
      Gauri
      Participant

      Hi

      I, Gauri, 50 year old, mother of 2, am a Parkinson’s patient since last 8 years.

      It all started with lactation during pregnancy. I experienced hyper lactation post both delivery. It was unmanageable, painful, causing tremendous discomfort……

      This was something I can not explain!!!

      I took medication to make it tolerable. But it relieved me to the extent of 10/20% only. I decided to feeding. It took 2years post weaning for secretion of lactation to stop. I went through post partum depression which I only undertook today. A few years then I went on a diet. I was happy that I shed about 7% body fat.

      One fine day 😉 I woke up to realise that my neck, hands were so stiff that it made movements difficult. My walking changed. Suddenly I started dragging my foot, taking short steps. Entire body movements became slow. For example, tying a shoe lace became almost impossible task for me. I was 41 then. A visit to a neurologist revealed that I am suffering from Parkinson’s.

      It took 5 years for me to believe the truth only then I accepted the medication.

       

    • #19853
      Joyce
      Participant

      I met a woman at Parkinson’s class who had lost a daughter, I am reading about the woman who had problems after delivering her third child, I remember being doubled up on the floor in stomach pain, later diagnosed as IBS  and losing 40 pounds, after finding out my husband had been unfaithful after 30 years together.  How many of us have experienced situations which caused severe emotional stress which in turn set off our digestive system and 15-20 years after the event developed Parkinson’s. I had no toxic exposure that I know off-just extreme emotional distress.

    • #19858
      Clive Varejes
      Participant

      Not a clue.

      However I do have complex seizures of the left temporal lobe, which was diagnosed about 12 years ago, so perhaps that added to it.

       

       

    • #19873
      Peter Chaisson
      Participant

      Hi, I am 55 years old. I have had Parkinson’s for about 8 years. Had a DAT scan in 2016, verified I had PD.
      About 20 years ago, I went to my primary care doctor complaining of abdominal pain. He wrote me a prescription for a nausea. I told him I did not have nausea. Five day later I went back to my primary care doctor because I had a high fever. He told me to go to the emergency room. I went to the emergency room and they checked me into the hospital where they gave antibodies for 6 days before my fever went down. I believe this is the reason I got Parkinson’s.

    • #21105
      John Bumpers
      Participant

      I feel pretty certain that my Parkinson’s disease is a result of having spent 2 1/2 years at Camp Lejeune back in the late 70’s. They had a highly contaminated environmental system due to various chemicals being dumped into the environment. I am receiving VA disability compensation as a result.

    • #21106
      Rob
      Participant

      I have been looking for commonalities, patterns and connections. So far, I have to say that toxic pollutants  that are metallic in composition play a role, There are many threads that address the autoimmune network, and occupations and workplace safety plays a role.  Does anybody know: Is there a giant box stashed away in a far distant land, with class action lawsuit records? Whether resolved or not, there is bound to be volumes of information available there.

       

    • #21842
      Rob Stehlin
      Participant

      I have one – oral health.  If you have PD, please complete a survey I have come up with to prove or disprove the idea oral health issues could be the root cause of PD and Pre-PD.  Very short but hugely important

      ORAL HEALTH SURVEY – CLICK TO COMPLETE

    • #21854
      Susan Swint
      Participant

      I believe there has been some conjecture about association with earlier severe viral disease, such as the 1918 Spanish flu. (My father-in-law developed PD in his 70’s after surviving the flu on a WWI troop ship.) I had both an unusually severe case of measles in the 1950’s and a terrible bout with the flu in 1967-68. It is known many viruses can asymptomatically lurk in our bodies to emerge later from stress or age in a manner similar to chicken pox/shingles.

    • #21865
      Rob Stehlin
      Participant

      I just want to thank those that have taken my survey – you all are making a HUGE IMPACT.  Please share with others with PD.   We are going to make a difference.

    • #21867
      Beth T Browne
      Participant

      Well, I don’t recall responding to this, but then my memory has been affected some by Parkinson’s.

      I did the genetic testing by the University of Indiana as given to me by Fox Foundation.  It was negative.  I figure I got it do to old age.

      I am 84, still able to drive, cook, dress, exercise regularly, and just completed some Balance classes.  My tremors in my right and are my biggest complaint.  I don’t go out to eat due to that, and that is upsetting.  I could not take the LevaDopa.  It caused extreme nausea.  Now trying Rytary, but in a very small dose.  I am just going to have to stop wondering how I got this and accept it.

    • #21868
      Adam
      Participant

      81 now, cocaine addict in the 1970’S and 80’S. Have PD for ten years, mostly tremor. Am sure of the cocaine connection. [email protected]

    • #21873
      mary parker
      Participant

      All of the replies are so interesting. MY Theory is at age 14 I almost passed away from carbon monoxide poisoning. Over the years I developed symptoms very slowly until diagnosed at age 60. The first symptom was for many years people kept telling me I walked with a limp.

    • #21874
      Rob Stehlin
      Participant

      Beth, Adam and Mary – do you have any root canals, teeth extracted or suffer from low level abscesses or infections associated with your teeth?

      • #21875
        Beth T Browne
        Participant

        Over the years I had fillings. I also had a couple of root canals.  No teeth extracted but found out this month, I do need to have a jaw tooth pulled.  Saw the Xray.  I am having no pain, dollars involved, so I am putting it off for a while.  Wondering, however, how that might affect me with Parkinson’s.

        Had a gene testing with Fox Foundation and no one in my family has had this disease.  Is it just from old age, since I have had it since I was 81?  I am a cancer survivor, but no radiation or chemo.  A mystery.

    • #22399
      John Bumpers
      Participant

      I was stationed at Camp LeJeune, NC for 2.5 years while in the Marines. That was 1977-1980. From 1953-1987, Camp LeJeune had the highest environmental contamination ecosystem of any military base in the US inventory of military installations. I believe that is what caused my PD. I am a disabled veteran on disability for this. I have been very fortunate to have an excellent doctor that has me on meds that keep me from displaying any symptoms.

      • #22401
        Beth T Browne
        Participant

        John, great news. Could you share the medication he has you on? Thanks.

      • #22928
        John Citron
        Participant

        John,

        My uncle was there in the 1950s to early 1960s and lived in the barracks near the drycleaners. He ended up with multiple cancers from it. Sadly, he passed away in 2011.

    • #22402
      John Bumpers
      Participant

      “She” put me on 25-250 Carb/Levo 4/day, and Amantadine 100MG 3/day.  I was diagnosed 4 years ago, Feb., 2018.  I was on Carb/Levo 10-100, and my Dr kept increasing my dosage. I was up to 16 pills/day and had diskanesia(sp?) pretty bad.  I decided to see another Dr in the Dallas/Ft Worth area that had been recommended to me.  I saw her last November 12, and she changed my meds to the 25-250 Carb/Levo and Amantadine 100mg.  Within 48 hours of beginning the new meds, the diskanesia was totally gone.  I now drive to Arlington, TX every 4 months to see her, and it is going very well.  Most people aren’t even aware that I have PD until I tell them.  GOD is GREAT!!!!

      • #22403
        Beth T Browne
        Participant

        John, you are fortunate the meds are agreeing with you and apparently have helped. I was extremely nauseous on the Leva/Dopa and lost 5 pounds. So now I am on Rytary, the same, just time released. It doesn’t bother my stomach, but my tremors seem worse, and my blood pressure. Amantidine I am familiar with as my pulmonary doctor in SD prescribed it to keep me from getting sick with my lungs, and it worked. I only took one or two and it stopped whatever was making me sick. It worked fine and never bothered me until about 6 or 7 years ago, and it started making me very nervous and shaken. Weird. I would hate to have to take it daily. Funny, how we all are affected differently in many ways. People don’t know I have Parkinson’s. If I am at a gathering and my hand shakes, I make a comment about having tremors. I am in my 3rd yr. I still drive, shop, etc. and I have other serious illnesses. My heart and lungs for one, an esphogus problem, and I am a 28 yr cancer survivor. Will be 85 in Feb. Thanks for sharing your info, and I am so happy for you.

      • #22404
        Beth T Browne
        Participant

        John, you are fortunate the meds are agreeing with you and apparently have helped. I was extremely nauseous on the Leva/Dopa and lost 5 pounds. So now I am on Rytary, the same, just time released. It doesn’t bother my stomach, but my tremors seem worse, and my blood pressure. Amantidine I am familiar with as my pulmonary doctor in SD prescribed it to keep me from getting sick with my lungs, and it worked. I only took one or two and it stopped whatever was making me sick. It worked fine and never bothered me until about 6 or 7 years ago, and it started making me very nervous and shaken. Weird. I would hate to have to take it daily. Funny, how we all are affected differently in many ways. People don’t know I have Parkinson’s. If I am at a gathering and my hand shakes, I make a comment about having tremors. I am in my 3rd yr. I still drive, shop, etc. and I have other serious illnesses. My heart and lungs for one, an esphogus problem, and I am a 28 yr cancer survivor. Will be 85 in Feb. Thanks for sharing your info, and I am so happy for you.

      • #22731
        JerrySmile
        Participant

        Hi, John. Interesting information, thanks.  Could you or anyone else tell me how do you cover the night intervals? I am at 9 years in PD now and was taking until 1 month ago: Levocarb 100/25 mg 1.5 pills at 6 am, 10 am, 2 pm, 6 pm and midnight; Entacapol, 200 mg, 1 pill each time with Levocarb, 5 x a day; Azilect 1 mg 1 x day. Now, that worked OK (I had about 1 hr off – tremors, gait problems at the end of each 4 hr interval, which I had is common), but gradually at night it didn’t, because I had 2 x 6 hr intervals (from 6 pm to midnight and from midnight to 6 am), and the off periods were 2-3 hrs long, at the end of each 6 hr interval. Say I woke at 6 am, I had tremors and gait problems which were quite impairing. I saw the doctor and she said to try at night with 1 extended release Levocarb pill when going to bed (11 pm for me). Unfortunately, at the end of the 6 hrs intervals I don’t feel better.  On a positive note, I found that doing some bodyweight or Pilates exercises, after taking the pills, accelerates the start of their effect. As well, avoiding proteins, and taking say just fruits with pita bread. So, yes, I’d appreciate knowing what everyone is doing about meds at night. I searched for “levocarb at night,” didn’t find much in the forums, even though I believe some info must be there. Thanks, everyone.

         

    • #22405
      John Bumpers
      Participant

      Beth,

      I would love to take Rytary, but it is totally out of my budget.  A 90 day prescription costs almost $1400.00.  Totally ridiculous!!!!

      Best,

      John

    • #22408
      Rob Stehlin
      Participant

      As we all are looking for root causes of PD, we can see there are many ways to get to a point where we can be diagnosed.   If you have not completed my survey, please do as I look at the oral microbiome as a potential cause.    The survey takes 5 min to complete and I hope to share the information with the group once I get 300 to take the survey.  I am at 150 and looking for more with PD to complete it.

      Oral Health Survey

      Thanks – Rob    Diagnosed with iRBD 2019

    • #22430
      Garry Maxfield
      Participant

      I started getting PD symptoms 3 years ago but tried everything until a neurologist confirmed I had PD this year.

      Theories as to why?

      I think it from being alive

      Don’t complain, you may be a role model for someone else who is suffering too

       

    • #22445
      Robert Harris
      Participant

      Thinking about THE cause of Parkinson’s is like thinking about THE cause of cancer. Think instead about the underlying cause of PD symptoms: dying brain cells. Then, think about what you have experienced that is/was killig your brain cells. Candidates for my case inclde ***playing with mercury as a kid, ***using large amounts of bug spray in a game to kill ants, ***using and playing with many other neurotoxic chemicals. Look at the labels of pesticides, herbicides, and the like. Do some research. “Neurotoxic” means “kills nerve cells.” And guess what kind of cells brain cells are.

    • #22482
      Bill
      Participant

      Agent Orange exposure in Vietnam. Spent 11 months on the rivers in the Mekong Delta. We were in areas which were sprayed and 100% of the water we used came from the rivers and was contaminated with AO. There are no prizes for knowing the origin of the PD, however the tremendous support system available to us is a gift. In many ways, at age 77, I am healthier than I have been in years because of lifestyle changes made in dealing with PD. The symptoms don’t care what happens. What I do to mitigate them does matter and I am thankful for the abundance of support available.

    • #22443
      David Dorsey
      Participant

      Dopamine production in the substantial nigro.. And how this dopamine is used in the subthalmius nucleus is a mystery…the reason this production is shut down is the real issue. Levodopa is currently the only substance that the brain has accepted to the treatment of the symptoms.
      We must address the root cause of the dopamine shutdown.

    • #22721
      Monica R
      Participant

      I believe I have an inherited form of Parkinson’s. My father has had tremors and other overt symptoms of Parkinson’s since his mid-50s (he is now 91). He has not been officially diagnosed, but we have many common symptoms

      I was diagnosed with Parkinson’s in my early 60s, but believe that I’ve had the disease for a very long time. In my mid-30s I noticed a change in my gate and other symptoms have occurred over the years. About 10 years ago I was diagnosed with essential tremor, but that diagnosis was replaced with diagnosis of PD a few years later. Levodopa helps, Asda is ropinirole and gabapentin. I also have chronic low vitamin D levels, as do many in my family.

      I’m hoping to have genetic testing done with my father this summer and maybe that will provide some answers.

    • #22724
      Deepak patidar
      Participant

      I’m following the advice of the Parkinson’s Recovery Project.

    • #22765
      Kevin McGuinness
      Participant

      I also have Addisons disease and two other autoimmune diseases.  Getting Parkinsons shocked me.  I have found no connection with these other diseases and Parkinsons.
      At times i cannot determine which disease is responsible for my multiple symptoms.  I have played highschool and college football and spent 4 years in the military.  I worked summers in a steel mill on the charging floor and in the flues under the furnace.  I have advanced college degrees and worked in the medical field.
      There is just no reason or clues i can find for the development of Parkinsons.
      I don’t complain much but i am majorly disappointed.

      • #22805
        Bill
        Participant

        Kevin, Knowing where it came from is sort of the booby prize. There is a tremendous support system out there for Parkinson’s patients and their caregivers . . . a support system that will make a difference. Find a local group, do things that will keep you upright and moving.  At 77, I have Parkinson’s, it does not yet have me.

    • #22863
      Alan Tobey
      Participant

      In 2009 I was. just ending an unfortunate decade with undiagnosed non-celiac gluten intolerance — actually an intolerance to the gliadin peptide which, together with the celiac intolerance to the glutenine peptide, covers the whole gluten molecule. People with gliadin intolerance(more common on average among people descended from people living in northern European islands and coastlines), often inherit a gene variant which produces an altered form of the antigen-presenting T cell that allows it to ID and capture for an inspection by other T cells which can put them on the kill list for active processing. WHen the immune system was revved up by another active infection (in my case probably SHingles, the immune system apparently got an all-hands-on-deck message to be less discriminating in ID’ing candidate artive and aggressive foreign invaders; in this situation gliadin is among the enemy peptides nominated for attack. WHich the immune system did, mistakenly treating gliadin as evidence of a dangerous evil enemy, and firing up the whole defensive mechanism. Which includes the production of large quantities of gliadin antibody to be stored away for a future fight with gliadin in the form of wheat-containing gliadin..

      Meanwhile, the same gliadin antibody has been discovered to cross-react with cells in the cerebellum, interfering with normal function there. This has been called “gluten atoxia.”

      After diagnosis for gliadin intolerance, I learned that the only treatment is cold-turkey abstention, which I began early in 2009. About a week thereafter, I began having inflammatory symptoms — most consistent with the response to wheat allergies. At that point I had no gliadin in store (no wheat in my diet anymore), but the immune system had been toned up for daily battles with gliadin and kept pumping out more; gliadin antibody than ever. The best presumption is that this reached toxic levels, and cross-reacted with neural components that triggered my initial PD symptoms, setting off progression that hasn’t quit yet. In any case my reaction was immediate, with bradykinesia and resting tremor of multiple muscle groups (quadriceps and forearm primarily) appearing over a ten day period. ANd this trigger altered my normal system by further toxic effect, heading me down the not-quite-idiocratic path to 13 years of PD so far.

    • #22865
      Garry Maxfield
      Participant

      While there will be as many different theories as there are people with PD, an observation;

      Before diagnosed with PD life was always a rush. Busy here, busy there, found it hard to slow down. Now I am forced to take things slower and be mindful of what I do. It’s been a lifestyle change by being forced to slow down…..

    • #22893
      Christine Pratt
      Participant

      Before I was diagnosed with PD a friend pulled me aside and told me he thought my job was “killing” me. I had sharp pain in my left shoulder for almost two years and this caused my left arm to not swing when I walked.  I believe the “frozen shoulder” was the result of extensive high stress in both my personal life and with my job.  Being a Type A person I work hard, was in an office tied to a laptop often 10- 12 hours a day, had a very full personal schedule, slept little, ate junk food, took meds for cholesterol which caused my blook sugar to run high.  Constipation was a constant problem.   Basically I pushed myself hard.  I tried acupuncture to reduce stress and my shoulder pain but it only worked for a short-time so I was sent to physical therapy.  The physical therapist is who told me to see a neurologist. This is when I was told I had PD but I never had any test other than when I was given levodopa the symptoms improved.   I think the cortisol which results from stress burned out my brain and reduced my dopamine production.  I am not sure if levodopa helps or causes some symptoms.  I have been treated for PD for over 7 years but in the last couple months my doctor added Amantadine which has helped a lot.  This a type of flu med which is supposed to minimize inflammation.  Not sure where this will go.  My version of Parkinson’s is all about gait/mobility issues.  My focus is on limiting anything that creates cortisol and increasing anything that increases dopamine.   Does this sound familiar to anyone??

    • #22898
      Robert Li
      Participant

      Kevin, since you worked in a steel mill, have you ever had your Red Blood Cell manganese (not magnesium) levels checked?  Manganese is a component of most steels, and inhalation of airborne manganese can cause accumulation in 2-4% of individuals.  The RBC manganese test is not perfect for detecting if you have a deposit in the basal ganglia, but it is a quick screening that your general practitioner can do (some hospitals don’t offer the test, but most national labs do).

    • #22897
      Robert Li
      Participant

      Hi Christine, the slept little, high stress, brain always going lifestyle sounds familiar.  I don’t have PD, I have dystonia, finger twitching, balance issues, reduced sense of smell, etc.  I got over my constipation with the help of a doctor fixing my gut.  Fixing the constipation has potential to help dopamine production because you need to be able to absorb tyrosine broken down from protein in order to produce dopamine without L-dopa, and sometimes the gut just won’t do it if it’s not working.  I wrote more about dysbiosis here: https://www.dystoniahelp.org/dysbiosis/, if you’re interested.

    • #22906
      Den Russell
      Participant

      As Billy Connolly – fellow Parkie – said recently “it used to be called “Palsy” till
      A Doc called James Parkinson took it up…..
      i wish he,d kept it to him(@@@@@@@)self!

    • #22929
      John Citron
      Participant

      I have three possible vectors where I got PD from.

      My grandfather on my mum’s side had it. He unfortunately passed away with no treatment for it. I remember him tremoring away and staring off into space. The family blamed his tremors on drinking, but he didn’t drink a lot to cause tremors as I’ve seen in other people. He was also called lazy, dumb, and slow, and this was the Parkinson Disease; he was none of that at all.

      I worked in the high-tech industry initially in circuit board assembly and later as a technician where I was exposed to solvents, flux, solder, and chemicals from the components themselves.

      I was also on Lipitor from 1995 to 2004.

      I always questioned statins and never felt well when I took it, but being a good patient, I listened to my doctor. I have familial high cholesterol and it takes a lot to lower the values to the “normal” range. The doctor doubled my dosage and after that I really didn’t feel well. During a routine blood test, he discovered I had very high CPK levels and during this time I also had really bad cramps in my legs. I was sent for an EMG/NCT and that showed some muscle weakness and I also had Rhabdomyolysis from it. I stopped the medication and never felt right since.

      By mid-2004, the spasms and cramps got worse. I would get them when driving and ended up pulling off the road. Little did I know that was the PD. I still get those so bad in the wee hours that I have broken toenails. My hands tighten up so bad I end up with bruises in my palms sometimes at the same time as the feet doing their thing.

      I could barely get out of my car, and my left arm wasn’t swinging. My manager noticed that and the fact I wasn’t smiling. He noticed too that I was clenching my left hand tightly and asked who I was about to put down, kiddingly of course! He did insist I smile. Knowing now what was going on then, now makes sense.

      I am a classically trained pianist and played and still play almost daily. I noticed too that my hands wouldn’t always get their act together and my coordination was off. One day, I developed tremors on my left side, and it was then I contacted my doctor. I still get this and it’s very upsetting and frustrating.

      He sent me to a neurologist who said I had Focal Dystonia after we met for about 19 minutes. He came to this conclusion because I play the piano 1 hour per day if I was lucky. Yeah, this did it.

      He handed me a bunch of brochures and said to see him in a few weeks for further testing. I then saw his associate who noticed other pyramidal and extra-pyramidal anomalies. I then met with this doctor again, and he said exactly what he said before along with set up an appointment with my Botox clinic. It was then I put the brakes on and questioned him. Let’s say I didn’t have a good repour with him afterwards.

      Being a musician, I joined a Musician’s with Dystonia support forum and talked about my symptoms. The doctor on the forum told me to seek a second opinion because what I had didn’t sound like FD! A friend of mine, a doctor, also said the same thing. There’s a picture of us standing together and there I am holding my sore left biceps, again.

      After that, I insisted that neurologist give me some Sinemet, and it worked 100%! I felt normal after the first dose with not even a touch of nausea. The medication increased plus Mirapex.

      When I asked him about PD, he said I wasn’t old enough to have it. I then switched to another neurologist in November 2016 after he messed up a report to my primary care doctor, and I’ve been with her ever since.

       

       

    • #22930
      Patricia Conner
      Participant
      1. I had a bad accedent that affected my neck and spine.  It was a 10hour operation and a lot of physical excercise afterwards. .  I was operated in the USA,  but physical was in Mexico via the French .  Usa was good for operations but they have no concept on just living with a problem as not all can be solved.  Sorry, I am European.  Anyway, I swam three times a week and had magnets (FORBIDDEN IN THE STATES BUT ETERNALLY USED IN EUROPE) and dances to Rod  Stewart.  When covid came, I could not go to the pool and my addison pick up.  I went on urgent care, dying and I survived but then I had Parkinson tremors.  As it worked after the accident, I dance sitting on a chair like a mad arm swinging women, voice excercises and swam.  But I have non systems Parkinson and tiredness.  I learned that you can not be tired twice so only one can cause that.  I take one pill a day for addison and only one for  Parkinson .  Luckily, I am of  two nationalities.  The USA likes to know Why and has a boss for all.  This is good for new medicine.  But the French like to know how to live with it and work backwards to forwards.  They insiste on excercises and just brushing  off the idea something gave it to you.  It is just life. I dance to rod Stewart “you can stop me now” which makes me throw off the weight of knowing I have Parkinson.  His rythem is constant AND 15minutes takes off the half day freezing etc.   But my addison is fatal in ten yrs but never causes me any problems except one pill a day. .  Me and Rod Stewart, swimming, singing for voice are working for me to have fun.  I am 75yrs so my knees hurt but that is age, not Parkinson. My excercise and living with Parkinson is like any 75 yrs as long as I keep dancing to Rod and also alexander who has Parkinson but was leader of boichoi ballet.  The Russians are like the French.  We need to know how to Live with it and why is for the future generation.  So your mental spirit is most important.  Do not hope for a cure but fun the next day.  Europe and Asia and Russia are famous for “living” with it as we had the the “trembling sickness” for many years.  The US is working on the INTENT theory that saves Dopamine and we are very grateful for their help as they are to ours.  I do not believe we know what causes it so no guilt trips. I understand lung cancer as that is smoking.  But Parkinson is just life and IS the least horrible (NS, MA, AKS, HUNINGTONE, ETC)
      • #22931
        John Citron
        Participant

        You went through the wringers as they say Patricia.

        My first neurologist wanted to visit his Botox clinic to make money off of my insurance. Being one to question, meaning I put on my critical thinking cap and asked questions that he didn’t want to answer, we became adversaries.

        Eventually, after a report back to my primary care doctor that completely contradicted what was discussed in his office, I finally got a second opinion. It was then that this young neurologist, fresh out of John Hopkin’s and did her residency at Mass. General, with an open mind who put me through a bunch more tests.

        In addition to the EMG/NCT, I had tests for poisons, low vitamins, which proved my Vit B12 was dangerously low. Dangerously low as in being at 27 instead of in the 900-range where it should be. The first doctor never bothered and had made up his mind in 30 seconds, I think.

        After this incident, I discovered you need to become your own advocate and fight back when things don’t “smell right”, you need to speak out and speak up loudly and keep pushing when things aren’t right.

        I think part of the problem over here is doctors don’t listen to the patients and don’t look at the whole picture and instead focus on a tiny point. This is unlike the treatments you see in Europe where they focus on the body instead of one small thing.

        Over here because of that micro-focusing, they instead have preconceived notions and theories rather than looking at all the facts and listening carefully. I ran into this with another doctor. I had pains in my neck along with numbness in my face and awful headaches. I was told it was a migraine and then told to deal with it.

        After passing out one day, I lost coordination with my hands, couldn’t tie my shoes, or do much of anything for a month. I was sent for more tests… I had a TIA (ministroke)! During the ultrasound, a tumor was also discovered on my thyroid which I had that removed.

        That was a 4.5 cm cyst putting pressure on my neck. When I had that removed, the pain in my neck and shoulder went away. I was experiencing two things and the doctor I had didn’t listen to me at all. My hands recovered, but the numbness on my face never went away.

    • #22941
      Robert Li
      Participant

      John,

      You have my deepest respect for following the evidence and working so hard to find what you need. Thanks for sharing your journey, it is helpful for me and I’m sure others to find solutions.

      With respect to heavy metals, they mostly deposit in the bones and tissues after a few months so they are not readily measurable in the blood.  I suggested testing for manganese because it is not really considered a “heavy metal” in the usual sense.  Manganese is a component of almost all foods and needed in the body in miniscule amounts for such things as detoxification of reactive oxygen species.  However, paradoxically, manganese in excess amounts can act like a heavy metal.  So the body has a very complex homeostasis system for manganese.  In some people, such as people with liver cirrhosis, this homeostasis system can be broken.  You will usually, but not always be able to detect this in a manganese red blood cell test.   But this test is rarely done as part of a heavy metal screen.

      Inhaled manganese pollution can bypass the first part of the body’s homeostasis system and travel via the olfactory nerve to the basal ganglia and deposit there.  Not surprisingly, welding is the highest risk common occupation for manganese-induced Parkinsonism and focal dystonias in the most used muscles.  This is because manganese can travel along synaptic pathways to whatever muscle sets you use/coordinate most, and create a local deposit.  Perhaps this could explain Musician’s dystonia?

      Once this damage happens, the most common report is that the damage is permanent.   Chelating agents will not remove much of the manganese in the body and brain, partially because tissue stores tend to be high.  However, I was completely debilitated by dystonia and Parkinsonism two years ago.  Today, I am not at all disabled, although there are certain motions I still can’t do.  I will credit my recovery to a lot of different things, but primarily fixing my vitamin D deficiency and unstable digestion.  These issues muck up the homeostasis mechanisms.  I am planning to write about that on my website, probably in February.   I will also write about the reason that B12 and folate/folinic acid are so important for detox, and very genetics dependent.

      Please, see if your heavy metals screen included an RBC manganese test.  My levels were equivalent to someone with stage 4 liver cirrhosis, nine months after I removed myself from exposure.

       

      • #22943
        John Citron
        Participant

        Thank you for this detailed information as well, Robert. I see my neurologist in a couple of weeks, and I will bring this up again. She’s very open-minded about suggestions and we work together and not as adversaries that have two different paths.

        Recently, during another routine blood test, it was found my Vit D was low and I’ve started supplements for that as well. I had a shot initially and now continue with pills for the. Vit B12 was initially weekly then monthly 5000 mcg injections and now due to Covid-19, I take 5000 mcg supplements. I do go for periodic blood tests for this because I’ve had absorption issues in the past and if the pills aren’t working well, I’ll need the shots. The B12 shots made a big difference in my symptoms more than anything I’ve taken.

        I mentioned the high-tech industry work because I’ve noticed a correlation between PD and that. My neighbor, who sadly just passed away, also worked in the same industry as a hardware technician and also developed PD. It makes me wonder if the chemicals used to clean the circuits as well as the materials used to make the components has something to do with this. Is this a one-off? I’m not so sure. There are others in the same industry that also developed PD including the former head of Intel.

        When all is said and done, we may never know because there are so many causes ranging from chemical exposure, viral infections, genetic predisposition, and anything else in between, but it’s worth working and researching with hopes to find out.

        It’s interesting research and the correlations help us determine what the specific cause maybe in some areas, but there seems to be an underlying predisposition for it, otherwise, the numbers would be higher. Why is it only 500 people in an area end up with a specific cancer or PD while the remaining 200K-plus residents do not? Is it luck of the draw, or is it something else that makes that happen?

        In my case, my grandfather had it. He also had the 1918 influenza which left him deaf. Was it the influenza that caused the PD, but why did I end up with it too? It’s questions like that go through my head all the time. I think this is in part my inquisitive mind, being one that loves science and engineering. It’s because of this, I put on my critical thinking cap and do a long and short look at everything that’s presented to me, and it was because of this the first, neurologist and I didn’t get along. He thought he could pull “I’m a smart doctor and you’re a dumb patient” on me and that didn’t go as planned. In the end, he’s no longer in practice which is a good thing for others but sadly he ruined a lot of people’s lives along the way.

        • #22953
          Robert Li
          Participant

          John, if you’re taking vitamin D, you might want to consider asking for your iron levels/stores to be checked as well.  Vitamin D tends to increase the number of metal transporters we produce (by allowing RNA transcription), which is good.  However, if iron is low then absorption of manganese may increase because they share the same transporter used for iron absorption from the gut.   Also calcium will increase absorption, so it is good to eat green leafy vegetables and other sources of vitamin K to avoid too high levels of calcium in the blood.

          Other tests you may want to ask for that can be related to motor issues is usually called RBC trace minerals – copper, magnesium, calcium, molybdenum, selenium, zinc, etc. in the red blood cells.  Imbalances of these can trigger motor disorders.  Also, if you ask for a manganese test, make sure the lab order has the test code number.  Otherwise someone along the chain may substitute magnesium for manganese.

        • #22954
          Robert Li
          Participant

          John, I think you’re right about several things – the higher risk factors in the high tech industry up to around 2010 include lead in solder and many of the chemicals used for making PC boards.  Lead and mercury not only cause various kinds of damage, they also disrupt the homeostasis of essential metals like manganese.

          In terms of genetic differences, yes there is a lot of evidence.  But there is also good news – many of the genetic differences have workarounds.  They are the genetic differences that predispose us for vitamin D and B12 deficiencies or glutathione S-transferase differences, for example.  Often there are benefits to these differences, such as lower risk of some cancers, etc., that’s why these differences are common instead of one in a million.  But all together they could also increase the risk for PD when we’re exposed to certain toxins.  It’s usually a multi-factor issue and you can’t prove most of it, only plot out the risk factors in your life and eliminate them.

           

           

        • #22990
          John Citron
          Participant

          The use of tin-lead solder is still prevalent in the electronics industry, although I haven’t touched a soldering iron since 1992 when I left that aspect of the industry and entered into computer operations. By then the US tech jobs had disappeared as they moved offshore.

          I will ask my neurologist and my primary care doctor about my iron levels if the D and iron go hand in hand.

          I agree there are too many dots to connect here, but maybe someday someone with enough money, time, and energy can do it.

        • #23000
          Robert Li
          Participant

          John, someday people will solve it, but not if they’re financed by the pharmaceutical industry.  I’ve been working with some of the top metals toxicity researchers in the world but it’s going to take a grassroots effort of people like you and me and many others.

          After I found out that I had high manganese, I was shocked to discover that every multimineral supplement has it.  There is no reason to have it supplemented, because there’s enough in food to supply you several times over.  Vegetarians tend to have higher manganese levels due to the higher density in some foods like nuts, spinach, and some legumes.  It’s also speculated that it’s because there’s less iron in the diet.  Iron and manganese compete for the same absorption transports.  Vitamin D helps gene transcription, so it increase the number of transporter proteins in the blood.  In a test tube, vitamin D increased the number of SLC30A10 efflux transports manufactured by cells by a factor of 15 times.  SLC30A10 sit in the inside of cells and slowly remove excess manganese and bring it to the liver.  SLC30A10 can also carry zinc so I am careful about not over-supplementing with zinc, to reduce competition.  SLC30A10 are almost 500 amino acids (protein components) long, so if you have any kind of digestion issues, production may be an issue.

          The other thing you must have to protect your neurons is glutathione.  Glutathione in the brain has to be produced by cells in the brain, although supposedly the liposomal form can pass the blood brain barrier.  Glutathione is composed of only three amino acids, and production is usually limited by genetics, methylation/sulfation cycle issues, or inadequate cysteine from the gut.

    • #22944
      Paulette Myers
      Participant

      I believe I have a genetic propensity to Parkinsons.  My father had a mild case and his mother had a bad case.  His mother spent her life on a farm until she was in her mid-twenties and was probably exposed to pesticides on the farm.  I have prodromal Parkinsons and have REM Sleep Disorder, which I have successfully managed with Melatonin most of the time.  I had a very mild thumb tremor a few years ago, but I started a regular exercise program and that disappeared.  I have been to a neurologist, but they don’t seem to want to do anything until the disease gets worse and I need medication.  I have been very disappointed with that.

      • #22955
        Robert Li
        Participant

        Paulette, there’s definitely multiple genetic factors and I see disabling dystonias on one side of my family line.  However, I got over my disabling dystonia by changing my lifestyle habits including diet, sleep, reducing stress etc.  For example, I take Melatonin both to help me sleep and because it is an antioxidant against manganese-induced damage to dopamine and dopamine circuits: https://www.researchgate.net/publication/263517329_Melatonin_Inhibits_Manganese-Induced_Motor_Dysfunction_and_Neuronal_Loss_in_Mice_Involvement_of_Oxidative_Stress_and_Dopaminergic_Neurodegeneration

        I’ve been trying to write more about these kinds of things on my website but it is turning out to a big challenge!  dystoniahelp.org

      • #22957
        Robert Li
        Participant

        Elizabeth, I’m so sorry to hear how you were treated by the original neurologist!

        It does seem you’ve tracked down many of your likely risk factors for PD, which is hard to do.  They definitely tend to be interrelated and none alone is likely to cause PD or severe systemic disease.  In terms of Factor 4: metabolic, have you found a doctor who can help you with the methylation and sulfation detoxification cycles (B12/folate/etc.), digestion, immune system, and metabolome, especially in regards to your detox genetics (MTHF, Glutathione-S-transferase, etc.)?

        Also, you might find that after you’ve successfully removed some mercury, more of the other heavy metals such as lead and arsenic are more willing to release.  But it is important not to rush heavy metals removal, in order to protect kidneys from excessive redeposit.

        Finally, something that has helped me a lot is to reduce my air pollution exposure using multiple HEPA filters and a cheap PM2.5 sensor ($<100).  There have been recent studies on the influence of PM2.5 on neurologic disease and on death risk and it is quite clear our bodies don’t have a great defense to air pollution when our metabolic issues are high, or we already have heavy metal deposits.

        • #22958
          Robert Li
          Participant

          Since you were exposed to pesticides, have you been checked for dysbiosis (imbalance of gut bacteria)?  Dysbiosis is a common driver for neurologic disease, and also has to do with immune system and genetics (such as natural vitamin D production rate).

    • #22952
      Elizabeth Bodner
      Participant

      My PD symptoms started January, 2002. I was 33. The neurologist predicted I would be in a wheelchair within 10 years, I started crying and was handed a prescription for an antidepressant. I have never taken one pill and so far no wheelchair. Tremor started 6 months after removing  14 Amalgam fillings within 2 months without protective use of chlorella algae, unfortunately. Later I tried to remove the amalgam metals esp mercury with DMPS combined with alpha Lipoic acid intravenously. My urine sample next morning was lab tested at 14x- 16 times higher than normal  mercury levels. I also sniffed DMSA to get to my brain via olfactory nerve. So metals for me definitely. Factor #2: pathogens esp. prions bacteria viruses but also amoeba (I grew up at a fresh water lake), worms, protozoa actually any bug. Factor 3: environmental: as a baby I lived in a house with asbest roof tiles and lead pipes: yay me. But also arsenic ( high amounts often found in rice) but I also believe it may be produced in the body by bacteria fungal  complexes). Factor 4: metabolic issues esp liver dysfunction (due to /I believe/ pathogens, glutathione insuff., harmful fatty acids) leaky gut is well known, hyper/hypoglycemia, harmful deposits in blood vessel walls ( Uric acid, oxalic acid, harmful fatty acid,  Dopal crystals /complexes deposits. Factor 5: last but not least: PSYCHOLOGICAL, as a child I was never allowed to cry because it bothered my parents so ever since I can remember I have been holding in emotions.

       

      • #22991
        John Citron
        Participant

        Wow Elizabeth, your neurologist was kind wasn’t he! *Snark here*

        Mercury and other heavy metals cause all kinds of nerve damage. The mad hatter was a real thing in the 19th century. The felt was treated with mercury to make the threads tighter and more pliable.

        Why Was Mercury Used in Hat Production? – Hat Realm

        Arsenic ends up in rice from chicken poop and feathers used as fertilizer. Arsenic is given to chickens to make them more palatable looking because it turns the flesh pinkish instead of letting it remain yellow. They go off to market and their manure and feathers is used to fertilize the rice. Arsenic is also used as a pesticide and for rodent control.

        The other thing I read was the arsenic ends up in the rice paddies because the land, especially in the Southern stations in the US, that was once used to grow tobacco and cotton is now used to grow rice. The fields were treated with arsenic-based pesticides to wipe out the bole-weevils that feast on the plants.

        How Much Arsenic In Rice Came From Chickens? | NutritionFacts.org

      • #22996
        Ally
        Keymaster

        Elizabeth, thank you for sharing. I’m particularly intrigued by your comment about repressing emotions. I don’t know much about this as it relates to chronic illness or PD specifically. Have you talked to your doctor or a therapist about this? Curious to know more if you’re willing to share.

    • #23020
      KRIT SINGH CHAND
      Participant

      I was hesitating prior to this but today I disclose the reason why I had parkinson since 2010.  I am sure that this reason is confirmed as I met no. of my acquaintences who have PD.  The reason is too much sex.  I experienced leg crambling after having sex with my life partner in earlier days.  I then met three of my friends and relatives  who had PD.  They confirmed  that they also used to do  too much sex and I am sure that this is one reason.

      • #23027
        Den Russell
        Participant

        Well, well.  You,re really digging deep….

        I am now thinking too little sex might be the reason

        for my PD.  Keep smiling

         

      • #23028
        Robert Li
        Participant

        Impulse control disorders or behavioral addiction reported in Parkinson’s disease include pathological gambling, hypersexuality, compulsive buying and binge eating.

        https://pubmed.ncbi.nlm.nih.gov/22921247/

        Hello Krit Singh Chand, I wanted to share this, which may help you reframe your conclusions and perhaps feel a little more positive, looking forward.

        There are genetic dopamine processing differences (primarily the COMT and DAT genes) that can predispose some of us to addiction, Attention Deficit Hyperactivity Disorder, Autism Spectrum Disorder, unusual sleep patterns, and even atypical response to caffeine.  These dopamine processing differences are not genetic defects, because they can have benefits, such as giving some of us excellent memories, unusual cognitive skills, or decreased need for sleep.

        There is a risk if we have naturally high levels of dopamine.  When dopamine is released, it is more vulnerable to oxidation reactions.  Oxidized dopamine can cause dystonia / pain, and in the long run can damage dopamine producing neurons.

        However, high levels of dopamine itself is not a risk.  The presence of toxins in the basal ganglia combined with dopamine increases the risk.   The most common source of toxins in the basal ganglia may be metal deposits due to exposure to long term industrial / metalworking / train track air pollution.  For more info, please see: https://www.hsph.harvard.edu/news/press-releases/significant-link-found-between-air-pollution-and-neurological-disorders/

        To reduce my air pollution exposure, I have a “True HEPA” filter in every room of my house.   I also have a small air quality monitor (<$100).   Finally, I don’t go out for more than a few minutes without an N95 mask, when http://purpleair.com in my area reads yellow or worse air pollution.  Call me paranoid but at least I can move again!

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