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Do you have theories about why you have Parkinsons?
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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.
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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.
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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.
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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?
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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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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.
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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!
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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.
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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?
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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.
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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?
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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?
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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.
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Wow, Robert! I haven’t heard about that connection yet. But it makes sense. Is this a relatively new finding?
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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.
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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?
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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?
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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.
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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.
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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.
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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.
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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.
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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?
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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.
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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.
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Hi Joyce,
I believe my PD has something to do with my siblings, who caused me so much stress, just before and after my mother’s death. My Mother died in April of 2019 and I was diagnosed on July 13, 2019. I developed a problem shuffling to the right when I was line dancing, then it became harder and harder to walk. I also was re-diagnosed with essential tremors by the same doctor at the same time. I had been diagnose with an essential tremor 20 years early, but it wasn’t and isn’t that bad, and a little medication keeps it totally controlled.
I also had an unfaithful husband and was divorced in 1980. I remember how traumatic and painful that was.
This is no fun, but with a positive attitude and friends, we can make it through. Although, with my speech being so low and hard for some people to hear or understand, I don’t know how long I will be able to be around some of those hard of hearing friends.
I also have found it valuable to go to a Support group once a month. Doctors don’t seem to give out any information, they simply diagnose. It is amazing the information you can get through support groups.
Good luck to you,
Judy
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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.
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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. -
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.
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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.
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