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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

    • #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.

    • #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.

    • #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

       

    • #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.

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