Do you have a theory as to what caused you, personally, to develop 'Parkinson's'?

Now that you have developed'Parkinson's' and have probably done some reading, discussed or carried out some research, do you have one thing in mind that you would have done differently in your life, if that were possible, which you believe may have caused it?

As one who has partaken of a lot of dairy products in my life, I would definitely have cut them out of my diet!

172 Replies

  • I suppose a combination of genetics and exposure to the right chemicals. As a kid I used to watch the crop dusters spray cotton fields with malathion and would get a good whiff of the stuff. My dad brought home some mercury and I enjoyed poking my finger in it. My car had a carbon monoxide leak that gave me bad heart palpitations. I noticed that I was very "right-sided", e.g. when I jogged my right leg was always sore because I favored it. So my theory is that I am genetically sensitive to certain chemicals. Exposure to these chemicals may have "knocked out" a few brain cells as a kid (I was an all-A student in Jr High School but became pretty average in high school). So until I reached the age of 50 years, my body's repair mechanism's was keeping me in check. As we get older (like an old car) our needed repairs outweigh the body's ability to repair and the symptoms begin. Since I am predominately right-handed I believe I probably had relatively more dopamine-producing cells to control that side, so when the repair process became inefficient, my left side started to show symptoms first. So that's my 2 cents worth.

  • Hello DeanGreen

    You have given us a 'painted picture' of just what it is like living in the 20th and 21st centauries with all the dangers we can become exposed to. Re the Mercury and crop spraying, they are dangers we just didn't take on board all those years ago, but now, we are so much more aware.

    Thank you for your response.


  • my late aunt who deid in 2008 from alheimers desease used to suffer from cold sores on her lips . it was only recently that I noticed similarities between her condition and mine ( APD ) noticable a shuffling gait problem and hepres infections so a google search came up with quite an arrray of posssisble causes for parkinsonisms this is one my favourites although my neurologists tends to poo hoo this I feel this is the posslble cause of my PD.

    here is an extract from

    My feelings are that Alzheimer's and Parkinson's can be caused by the same common causes.

    The symptoms will be different depending on which area of the brain is attacked first.

    The striatum is the closest to the nervous system and should be first in line for virii that travel along nerve fibers (HSVx). It is also situated in a location where heavy metals can pool, owing to the influence of gravity. This gives you Parkinsonism. Parkinsonism is basically the set of symptoms experienced when the dopamine producing neurons in the striatum have been damaged or killed off, usually by Nitric Oxide Synthase.

    If the virus remains latent and spreads past the striatum prior to activating, you will see symptoms defining Alzheimers or a range other neurological disorders.

    I concur with the recent hypothesis that HSV-1 / 2 + APOE-4 allele, is responsible for the increased levels of NOS, causing apoptosis and the creation of protein deposits in the majority of PD and AD sufferers. This is similar in some aspects to chronic herpes encephalitis.

    Parkinsonism can also be induced by chemical/heavy metal toxicity in the striatum. eg. MPTP, however HSV-1 induced Parkinsonism is more prevalent.

    I base my opinion on the following:

    1) Statistical correlation of HSV-1 & 2 infections to incidence of PD & AD cases

    2) Oral infections of HSV-1 are in an opportunistic proximity to the brain and particularly the striatum. HSV-1 is latent in the ganglia and travels along nerve fibers, so is able to traverse the blood brain barrier easily.

    3) HSV-1 is found in the protein deposits

    4) NOS is produced by HSV-1 during replication, requiring L-Arginine for the process. NOS is the chemical messenger that induces apoptosis.

    5) L-Arginine is synthesised directly in the brain, L-Lysine is not. Research has shown that amino acid transport efficiency across the blood brain barrier diminishes with age.

    6) Reduced absorption (from dietry intake) of L-Lysine in the brain leads to an ideal environment for un-noticed replication of HSV-1.

    7) The allele, APOE-4, increases the ability of latent HSV-1 to replicate in the brain. This may explain early onset diseases.

    8) The a-synuclein protein has recently (August 2011) shown to be a helically folded tetramer, not unfolded as previously thought. The tangled tau proteins implicated in AD interact with a-synuclein protein implicated in PD.

    9) Scavenging of L-Arginine by HSV-1 would result in less bioavailability of L-Arginine in the brain, removing the brain's normal ability to prevent aggregation of protein, resulting in the familar protein deposits.

    What you can do if you suspect your neurodegenerative disease is HSV-1 based (ie. have a history of cold sores):

    1000mg of acyclovir (Zovirax) + 200mg of amantadine, every day for 2 weeks, then drop to a maintenance dose of 400mg of acyclovir from then on. Expect dramatic results within a month.

    Ultimately, the key to curing parkinsonism or other neurodegenerative diseases is to identify whether the cause is a pathogen or exposure to a neurotoxic substance and then treat it. The symptoms should disappear once the underlying problem is taken care of and the brain has had time to balance and repair............ more

  • Thank you Steph02

    What a great deal of thought and investigation you have given to the causes of Parkinsonism and Alzeimers and the possible connection between the two. I must admit that I have never thought that a history of cold sores may be implicated.

    I just wonder if there is anybody reading your reply who can connect with what you have said, who will try the nutritional approach to its treatment that you have set out.

    Thank you again for taking the time to write such a comprehensive and interesting post.

    In appreciation


  • A bit dubious about fruit. Apples in particular since I've eaten a shed load of them over the years. I'm really referring to pesticides which may have a role to play. My wife was spraying the garden with something containing manganese which may be suspect. Nonetheless these things have to get beyond the blood brain barroier so who knows.

  • Hello Grey-stones8

    With all the non organically grown fruit and vegetables we eat nowadays, is it any wonder how much pesticide we are exposed to. Where fruit is concerned,which I eat raw, I always wash unless I scrape or peel off the skin, but I wonder if washing does any good? I suppose growers use pesticides because, we the customer, demand our food blemish and insect free, overlooking the consequences of taking in toxins. By doing so, we are part of the problem, it's not only the growers fault.



  • I did not understand a bit of that. Could you dumb it down, If you have the time thank you

  • Rex 25

    To which post do you want more explanation?


  • Norton, I can’t find it now, it might have been the one by steph02. These threads are very hard for me to follow. I think I’ll take that survey and tell Health Unlocked about it. Thanks.

  • thanks for information

  • thanks for information

  • thanks for information

  • thanks for information

  • thanks for information

  • thanks for information

  • Back when my husband was an electronic technician he built circuit boards with LEAD sodder. He would be right over the sodder iron breathing in fumes. that is the only thing we have been able to pinpoint that might have caused it. But you never know for sure. We also have lived in an area where under us is a huge contaminated plume of basically dry cleaning chemicals used for other purposes by the Air Force on Otis AFB. Could be affects from that as well I suppose Because I also have neurological problems though not PD.

  • Hello Arwenmark

    Your living on top of a dry cleaning chemical plume is a horror story. So is your husband breathing in fumes from soldering iron fumes. In the UK we have Health and Safety at work rules which quite frankly can be an irritation at times, but I'm sure there are many people alive today who have reason to be thankful for them.

    Thank you for your response.


  • I believe my PD is genetic, i don't think there is anything I could have done different that would have made much difference.

  • Thank you Hikoi

    I have heard somewhere (can not recall where) that genetics account for only 5% of the development of chronic conditions. The rest is down to environmental causes.


  • Yes it is a complicated subject Norton and I think we are only just discovering the genetic links, first gene found in 1997 and to date I think there have been identified 13 gene mutations that are associated with Parkinson’s disease. There is a difference between the rare “causal genes,” which actually cause the disease. A causal gene alone, without the influence of other genes or environmental factors, guarantees that a person who inherits it will develop PD. Then there are "associated genes,” which do not cause Parkinson’s on their own, but increase the risk of developing it.

    Have you seen the video called "My father my brother and me" ? A family with PD

    The 23andMe site says the about Genes vs. Environment

    27 %. Attributable to Genetics

    The heritability of Parkinson's is relatively low but a recent study estimated it to be about 27% in European populations. This means that environment generally plays a larger role than genetics in determining a person's risk for the disease. However, a small fraction of Parkinson's cases are attributed to rare mutations in a small number of genes, including the G2019S mutation in LRRK2. People with the LRRK2 G2019S mutation have a much higher than average risk of developing Parkinson's disease during their lifetimes.

  • Hello Hikoi

    I always enjoy reading what you write about. You bring to us good information, well researched and I thank you for your contribution.


  • Thankyou Norton

    Here is the video, an hour long. Things have progressed since it was made but still I hope you find it interesting.

  • Thank you Hikoi

    I will view the video you kindly brought to our attention, when I get time to break away from this thread which you inspired me to ask the question from the Professors protein thread. Thanks!


  • Hello Osidge

    As we know, PD is a strange condition, but the family scenario you describe defies any explanation I can give. I just wonder what medication regimes both were on. Could these have been a factor for the progress and outcomes?


  • You may enjoy the video I posted above Osidge by Dave Iverson. Originally a frontline pgmme.

  • Hikoi

    Thank you again, your contributions to this thread have taken it to a level that is beyond my knowledge.

    Thank you.



  • I think Modern Man is being challenged to adapt to an unnatural environment, the fate of the 99%ers since time immemorial. nothing has changed.... and it's going to take a long time to adapt to the environment we are marshalling in. actually, I think planet is going to take care of it and rub us out.

  • I believe my PD is environmental. There are 2 other people within 2 miles of me who also have PD. We are all barely a year apart in age

  • I do not believe my Parkinson's has an environ-mental cause. I grew up in Sierra Madre, and from the age of five in Long Beach. Neither my sister, still alive at 94 in a Montana rest home nor my brother, born 1925 and recently deceased

    had P. and we grew up in the same households.

    There were no known hazardous elements in the air.

  • Thank you Gladyscon1

    I have heard it said that PD can also be a symptom of aging and if we were to live long enough, we'd all develop Parkinso's!


  • Average age of onset is 60 years.

  • That is exactly the age I was diagnosed at!


  • Hikoi

    Compared with you and several others on this site, I am definitely 'below average'.

    Thank you for bringing up the fact that I am only 'average' to everyone on this thread!!!


  • Oh dear That definitely marks you as average then ! ( just kidding)

  • Hikoi

    You are right, even though you are kidding, that's why I'm pleased to have some of the big guns support this thread. But this website is so strong in depth with marvellous contributions from people we don't normally hear from. I have gained so much from you all!



  • Hello ivyanne

    The environment sadly nowadays contains some nasties in it which are obviously detrimental to health.


  • I have had a lot of manganese fillings since my early 20's my dentist says their is no proof these are harmful and it is not necessary to remove them. What do you think norton?....also somewhere I read that it may be from a period of deep stress/trauma which I could identify with but find it hard to see as the cause of Pd. my mother had a hand tremor and a lot of stiffness from her 60's onwards but the doctors say it was from a combination of medication and arthritis , she did have a lot of problems but I wonder was pd missed. ...I was properly diagnosed at 47 by that time my writing had diminished until I took the ropinirole and it magically came back...

  • Hello Marmaduke123

    I must admit that I have never heard of Manganese tooth fillings, but I have a few Mercury ones though. Like your dentist, mine says it has not been proven that they are detrimental to health. On the other hand, there are lots of people who advise against this type of filling and I prefer to believe them. What am I going to do about it? Leave well alone, because taking these fillings out will cause even more problems by swallowing the mercury.

    There does look to be a genetic link with the cause of yours; as for stress, it's only going to get worse in today's society. We should all move to Bhutan where laws are based on the principle of causing happiness.

  • Ha ha ..thanks norton you,ve brightened my morning. Yes. I think I'll move to Bhutan...

  • I'll pack my suitcase! When are you all leaving?

  • Thankyou for this zawy...very very interesting reading

  • Can we ever avoid what life throws at us? We can call it fate or whatever, but we can never know how life will pan out so cannot plan for anything (except saving for old age)

    Pointless saying if I had my life over again would I do anything different. I think none of us would unless we were aware of what we did in the previous life.

    I know with 99% certainty what caused my PD, but not one doctor will accept it.

    Back in 1999 my doctor suggested I was depressed and gave me Prozac, I took it for ten days then had some sort of fit, whereas I was sedated with massive doses of Vallium for a few weeks. I had a serious movement disorder for some years after, I was unable to work and lost my business. because no doctor (but one who later retracted his statement, probably by threats made to him from the authorites ) would stand up and say the Prozac caused this problem, they then all ganged up together to say it was all in the mind.

    Believe me, you are left on your own when authority gangs up on you.

    Even now with my diagnosis, I do not trust one doctor and never will.

    I had 25 years experience as a Registered Nurse in the health service, and always believed the NHS was above criticism. not now!

  • Hello Owdsod

    No, we can not change what has happened to us, but it might be possible to learn from others experiences. For instance I knew that Prozac could cause problems, but judging by your experience there is no way I would ever touch them. I actually enjoy reading about people's lives and thoughts about life. That is quite real to me and often I relate to them. As for yourself, keep contributing for they make black and white subjects, colourful.

    By the way, I agree with you generally about the medical profession and make every effort to keep control of my life and not let a doctor tell me what to do. That way, I have to take responsibility myself and that is the way I like it, but have to accept that sometimes you do something's on faith!

  • I bekieve that working at the county courthouse for 30+ years is a big factor,,There was alot of mold, mildew and asbestos...I can list a minimum of 7 people (out of a workforce of approx. 30) who have PD.

  • Hello Grandmasanta

    I should think that stress may also be a factor in that environment.


  • Hi Norton, I'm very interested in the herpes/ Parkinson theory. I always suffered a lot from cold sore herpes before I was diagnosed with Parkinson's, and was also unfortunate enough to contract a severe dose of German measles from my grandchild which ended with encephalitis..

    Must bring this up with my consultant when I next see her.

  • Hello esrob

    We are grateful to Steph02 for he input yesterday. It was generous of him to share his thoughts and experiences with us.


  • Wow! Our local courthouse also had similar mold problems for some time. Having mold allergies and being chemically sensitive myself, I know what daily stress can do to body and mind. Asbestos as well? I hope your life is somewhat better now despite PD.

  • Thank you for your contribution. As for myself, I am improving on my lack of sleep, thankfully.



  • Hi Norton.

    I can't imagine not eating cheese. Life without cheese would be like getting all dressed up to go out and finding nobody wants to go out with you. Where is the pleasure in that?

    Do I think that there was one cause of my Pd? Yes! I think that having eight amalgam fillings in my teeth in one year, caused my Pd. My Pd started two and a half years later, in 1963. Stress may have triggered the Pd and have exacerbated it, but the cause, in my opinion, was the mercury in the fillings. I had no contact with crop spraying or dangerous chemicals, although I had worked for a company between 1956 and 1963, which entailed me using something like carbontetrachloride, which is also a possibility. I hope this is what you are looking for.

    Kind regards


  • Hello John

    It's always good to hear your comments. In answer to your question on do I have any thoughts on what caused me to develop PD, yes I have. I have drunk a lot of milk, eaten yoghurt, cream and cheese in my life and now I know that dairy products have been implicated as a possible cause of PD I have dispensed with them. Why? Well I want to try and slow down or stop its progress. What is the main reason for eating food, it is to give us energy. Yes, I know that eating can be pleasurable and social, but they are secondary to getting energy and do not want to take in dairy which is meant only for calves anyway.

    There is another possible cause, which is that I used to service quick release fittings in the RAF using Tricloethyline, spelling? It has been said that working with this solvent increases your chances of developing PD, sixfold. I used to dip my hands in it and breathe in the fumes until I was dizzy.



  • Hi John. It's good to know there is another cheese lover among us. I sure hope we don't eventually learn that we have to give it up.

  • Hello Joanne_Joyce

    I know you come from Winconsin and like milk etc., but you and I have been here before! Cow's milk is for calves. My take on it is that i want to slow down my PD progress if I can and cutting out dairy may help, but no guarantees. Humans are the only species that take another animals milk so far as I know; can that be right and healthy? I liked eating cheese too, but it is a rich food and along with other processed food is too rich and not health promoting.

    Sermon over!

    Kind regards


  • Thanks Norton. I'm ready to learn more about that and I'll let you know when I take your advice.

  • Jonne_joyce

    I think that there would be quite a lot of information on the Internet which backs up what I am saying, but there will be others saying it is health promoting. Often, these people have some self interest in why you should continue eating dairy.



  • These are interesting theories and could be a fascinating thesis for someone's dissertation. I've had more than most when it comes to dental work and fillings, had hpylori virus that caused a bleeding ulcer, spent 25 years in the Air National Guard performing mid air refueling missions and 30 years in the steel making industry as a manager but in a mill environment. When I was small, I remember that my granddad sure did shake a lot. Who knows!

  • Hi Jash

    I think that what you describe is a possible cause of your PD. Health and Safety laws at work in the UK are a step in the right direction and may have saved a lot of people from developing serious health problems.



  • I had severe Lymes disease(Deer Tic) it was mis-diagnosed for almost 6 yrs. I was so ill I had IV infusions of antibiotics 4 days a week, 2 hrs a day for a year and 1/2. during this time because of severe nerve damage I was diagnose Parkinson. It was been a long,long journey of sadness for things lost and joy for a life I have learned to live and for allowing God's Grace to help and love me, Even when I didn't love anything or anyone and was determined to wallow in my self pity. I have wrote many times look for what you have not for what you don't have. When you do good for others you forget about yourself for a time which is wonderful for your heart & mind. Shake, Rattle & Roll!!(((HUGS)))

  • Hello Kadie57

    You raise another dimension to this problem , acceptance! I still think it important to look back a think what caused the PD in the hope that others may possibly learn from it.

    Thank you for raising some important points.



  • I have no doubt as to the cause of my PD. Lead poisoning from pumping leaded gasoline from the time I was 13 until leaded gas was taken off the market in 1973. 7 years. Remember the good old days of full serve gas stations, when cars did not turn off their engines when refueling and the gas tank was behind license plate and there was no clip to hold nozzle. Therefore I was bent over holding the nozzle while enjoying the fumes of the running car. As luck would have it I was working at the busiest gas station in Boston at Boston University. Boy I enjoyed those days.

  • Hello Landman

    Yes, I have read a few of your posts when you mentioned breathing in leaded gas fumes. When you think about it Landman knowing it is processed oil that is naturally found in the earth and like most, if not all, stuff from our earth (especially food) has a deleterious effect on our bodies if taken in sufficient amounts.



  • I believe mine came from being in 2 abusive relationships. I've had 2 concussions. The first when my ex-boyfriend drop kicked me down a flight of steps hitting my head and having to have part of my earlobe sewn back on. The second from an ex-husband that beat my head into the concrete in a parking lot. I am 57 years old and was diagnosed at 50. I have 4 older sisters and none of them have any signs of PD. My dad's older brother developed PD in his 70's so I'm not sure if the combo of these things or what.

  • Hello Harding55

    Oh dear, how it saddens me to read what some humans are capable of doing to each other. As you say yours could be due to possibly genetics, but your siblings do not have it so the most likely cause could be stress from your relationships and the trauma to your head. I'm sure everyone on this thread hopes that you experience a lot more contentment in your life nowadays.

    Kind regards


  • Yes I have been happily married to a wonderful man for the last 14 1/2 years and he takes great care of me and he is not abusive.

  • Harding55

    Thank you for returning here with your update. That is great to know and no less than you deserve. May I, on behalf of us all, say Hi to your man and wish you both many more years of peace and contentment. Your second post has uplifted me for the rest of the day.

  • Thank you Norton. Have a blessed day.

  • My husband has Parkinson's Disease. We both think his 4 yrs of Lipitor therapy caused Parkinson's for him.

  • Hello eml256

    I seem to recall that Lipitor is a statin, something I am averse to. There are quite a few side effects from statins, but I don't know if PD is one of them. You are the first person to bring it up. BTW, we recently read in our UK newspapers that an apple a day is just as effective; have you heard that?


  • Interesting that your husband's being on a statin drug preceded your husband's symptoms. Although I was already having fine tremors which also ran on my father's side of the family, they got and remained much more pronounced after I was put on a statin drug (for a minor elevation in my cholesterol). I think the fact that my Dr didn't advise me to start taking Co Q 10 with it also contributed, as statins deplete Co Q 10. Low Co Q 10 is very common in Parkinson's.

  • Hello Marion11005. Yes, it is known that statins can deplete Q10 and I have read in the past that at least one manufacturer is adding it into their statin.



  • I can’t help but feel that I’ve always had it - I have no science to back this up, it’s just a feeling. A feeling based on early childhood memories of pd like symptoms. I write a daily blog and I will discuss this in detail tomorrow - Thanks for the idea.

  • Hello Rex25

    I had a quick look at your blog and found it interesting. Thank you. It sounds as though your PD is of genetic origins, but you don't really say. You sure appear to be living a full life writing a blog for others to enjoy and that is inspirational to us PwP.



  • Thanks Norton - My mother knows of no one in our family who has pd, so I’m not sure. Like I said - it’s just a hunch. One thing, I read somewhere that being unable to throw a ball properly is an early sign of pd. I’ve always (sorry ladies) thrown like a “girl". Have you heard of this?

  • Rex25

    That's an interesting point and one I have never heard this hypothesis before.

  • This is very interesting. I was stiff as a board and uncoordinated as a child- now called fibromyalgia and have always been 'not quite normal'. Too stiff to learn to dance, threw a ball in random trajectories, and so on. In April 1986 (age 43) I came down with CFS/ME (disabled for 10 years). Chronic fatigue? as in "We're all tired what's so special about you?" (Are you crawling on the floor and having convulsions?) Anyway, a friend told me my right arm hasn't been swinging when I walk ever since he's known me - that would be at least 10 years before PD diagnosis. The central pain/paresthesia syndrome I developed with the CFS backed off quite a bit for years then came back in spades. It was the central pain that triggered the PD diagnosis 7 years ago. Sinemet has helped a lot with it and Lyrica has made life quite bearable. Actually, I feel pretty good. Maybe 'not quite normal'.

  • Thank you again for your contribution. I think many of us can identify with PD symptoms occurring several years before diagnosis. In my case probably 15 yrs



  • Cut out stress, harmful vaccines, minmum xrays, no root fillings or mercury.,no food with pesticides and hormones, no sugar, the poem 'ifi had my life again i,d pick more daisies'.. Be less afraid and fussy!

    Still worth trying to reverse synnptoms...

  • Hello Hilarypeta

    Good to hear from you. Although 'shaking palsy' has been around for hundreds of years at least, I'm sure you have listed several modern day possible causes. Agree about stress whole heartedly and the need to live as natural as you can. At times I feel as though I want to isolate myself from the mainstream, so long as you don't take my iPad away! I love it.



  • Norton, thanks for opening up this subject. What I would like is to get more information on siblings who grew up in the same environment. Why did I get PD and my brother didn't? Twin studies would be particularly revealing.

  • Hello again Joanne_Joyce

    I fear no one can give you a definitive answer to your question, but if you follow Hikoi's posts in this thread they may help you understand a bit more. Did either of your parents have PD, for instance?



  • JJ

    I agree its interesting about siblings, why did my brother and I get PD but the others in my family havent?

    There has been twin research but its getting old, so many advances have been made since recently. Approximately 15% of people with Parkinson’s disease have a family history of the condition, in other words, one or more of their relatives are also affected.

    Scientists are always very careful how they talk about causes until they have absolute proof. The other big issue particularly in US, but everywhere, is insurance company health care cover and the problems there would be getting cover if a genetic link was found. I think that can affect how PD organisations write about this.

  • Hello DeanGreen

    No not any more. As I have been a 'clean freak' all of my life using everything one can find on supermarket shelves, I did think chemicals. BUT PD has been around for centuries. Long before we were enticed to use these Hazards.

    My wonderful, new Neurologist has just taken me off all PD meds as according to him I have been overmedicated. I am to monitor myself and if I think I need some help then and only then will I use Madopar. No more Sifrol ER.

  • Hello Bridieelena

    I realise you addressed your post to DeanGreen, but I have to ask if you actually have PD and if so, how long since diagnosis and how long taking medication? What were the medications?



  • Hello Norton

    Diagnosed in 2009.

    Started on Madopar, three times daily, 6 hours apart.

    12 months later began Sifrol ER and then 12 months ago Azilect.

    Azilects side effects were, I feel, Skin rash and weight gain. I didnt feel any different on the Azilect.

    It is going to be interesting to see how I will tolerate not being on the Meds.

    I do have a 'problem' but exactly what remains to be seen. The alternatives to having something mimicking PD are not exactly palatable though.

    I am very very optimistic about the future .


  • Bridieelena

    Thank you for getting back to us. Yours is an interesting case! I hope that ultimately you do not have any neurological condition. Please keep us informed as to how you are getting on.

    Best wishes


  • Shall do Norton.

  • Hi Bridieelena. I am very interested to hear that a neurologist took you off all PD meds. Was that a clean break, or did you do it slowly? I know of so many Pd patients who have severe dyskinesias and who take huge Pd doses every day. They have all been told that they cannot come off Pd meds. I wonder which of these two scenarios is true?

    On the subject of stress: I am sure that stress does not cause Pd. It probably triggers the condition, but the condition would have to be there in the first place.

    On the subject of toxins: We cannot get Pd unless we have certain genes. Genes on their own do not cause Pd, other than the familial Pd gene. There must be a toxic insult to go with the genes.

    On the subject of trusting doctors: I had the experience of being diagnosed with Pd by three different neurologists. After nine years, In the year before I wrote my book, when I was feeling a great deal better, my neurologist told me that my condition was deteriorating and I needed to go onto sinemet. I went on for three months and because I felt no benefit from them, I came off. I don't know what symptoms sinemet temporarily stops, but as I did not have a resting tremor and I was able to walk properly again, at that stage, I don't know what else sinemet does for us. My question is, If I now no longer take any Pd meds, from just one year after my neurologist said my condition was deteriorating, Who do I believe? I have never needed to go back to that neurologist, or any other for my Pd. I think nerologists know a lot more that can help us, but don't want us to get better.


  • John

    Thank you for your input again. Re Sinemet, i do have a resting tremor and Sinemet dampens it considerably, BUT, it affects my walking perceptibly which worsens as I come off and after an hour or so my walking improves with no further Sinemet taken. It all boils down to lessening the tremor BUT at the expense of walking wellish!



  • Hmm. I do not have a resting tremor and sinemet helps me walk much better - I stumble from stiff legs without it. Different strokes I guess...

  • John, I cant believe Neurologists dont want us to be well.

    Yes, I have 'cold turkied' the lot. I feel no worse than when diagnosed in 2009.

    Its early days yet but as I sit on my deck with a Bourbon and good company, my Husband, I am very content.

  • This is not true. Only a small percentage of PD is genetic.The neurologist I know does want us to get better.

  • Hello PatV

    I can not speak on behalf of John Pepper and his comment about neurologist, but he has made an observation in the past about pharmaceutical companies not making more effective drugs because they want us to buy their drugs repeatedly to maintain sales levels and profits. In this, I can see his point.



  • In response to a post by 'Chidainer' a couple of days ago, who believed that his PD was caused by chemicals, I posted the following:

    My PD may have been caused by trichloroethylene. I am 74 and was diagnosed about 7 years ago due to a developing tremor. However, I suspect it may have been there, in the background, for 25yrs or more.

    In the second half of the 1950's I was apprenticed to a major bearing manufacturer, here in the UK. Trichloroethylene (we called it 'tricolene') was freely available and used for general cleaning and degreasing, there was always a container of the stuff around for general use, no special protection required. On the production floors there were large tanks of it where components were degreased / cleaned between machining and assembly operations.

    The following website may be of interest There are several more that can be located by a search. It might be profitable to study workforces employed at such businesses.

    I wouldn't claim certainty for the cause of my PD, but it must be a distinct possibility.

  • Thank you Plainbob for re listing your experience and thoughts on Triclorene under this thread. There are a few of us who have worked with that stuff or something similar who developed PD. I breathed he fumes in for hours at a time and dipped my hands in it whilst degreasing equipment.



  • Norton your question asks what 'caused' your Parkinson. Do you make a distinction between cause and trigger? Do you think they could be different?

    I understand that we have less than 20% of our dopamine producing neurons left when the condition shows symptoms that lead to being diagnosed. This means it takes years to develop. Recently I heard a scientist saying at least 10 years. If that is so (and I believe it is) then things that happened 2 or 4 years before diagnosis could not have caused PD because the person would already have PD by that stage but not know it. What do you think?

  • Hikoi

    What a question! When I opened this thread I was thinking of broad causes such as eating dairy, mercury fillings etc. yes, I am sure not everyone realises it is only when we get down to about 20% of our neurons left that symptoms manifest themselves to a point when we go to see our doctor. I would not say that we have fully blown PD 3/4 years before diagnosis, but agree we are well on the way with far less neurons than we started out with. I agree with the 10 year hypothesis, but from my own experience would go even further back than this.

    An interesting discussion, I wonder what other PwP 's thoughts on this are?



  • Yes indeed like you i too feel my symptoms can be traced back at least 10 years. Very interesting thread, thankyou Norton.

  • I have been diagnosed 6 months ago. Taking no meds and non prescribed at this point. Yes, I can trace pd-like symptoms back about 15 or more years ago, stiff arm movements while walking, one foot drops a bit and didn't seek medical care until tremor appeared post-hysterectomy surgery which caused extreme anxiety and tremor. No history of tremor or pd in family although I had one uncle who stuttered if that is a pd symptom.

  • Thank you RacerCP for your reply. I don't know if a stutter is a PD symptom, but I'm pretty sure that extreme stress can be a cause.



  • thank you!

  • Yes, my theory is that I was exposed to pesticides on the farm and suburbs and radiation near Mojave AFB at a child. Looking back I had small symptoms as a young adult. Also several head injuries as a child and adult. I probably would have displayed diagnosable symptoms by age 70 but manifested at 62, the year my 36 year old son died of accidental drug combination. My neuro says stress will exacerbate pd symptoms, e.g., holocaust survivors have higher percentage of pd than general population.

    Would I do anything different ? Yes, not stay with abusive husband. Take the kids go.

  • Thank you PatV

    Oh dear, you certainly have been put 'through the wringer' with occurrences during your life. However, I do read your posts on other threads and can tell that you still have plenty of spirit in you. Long may it continue.

    Kind regards


  • Hi Everybody reading this thread. I wonder if any of you, suffering with a resting tremor, realize how much emphasis has been placed on this symptom? After all, it is not painful, nor does it prevent you from doing things with the affected hand. Yes! It is unsightly, but so are many other defects, but the moment you start to use the affected hand, the tremor disappears. Then why do patients tend to not use the affected hand, which causes the muscles to atrophy, through lack of use? If I had to chose between having a restng tremor and an inability to walk properly, I would choose the resting tremor any day. We all know that dyskinesias are caused by levodopa medication, so are you temporarily overcoming the resting tremor and replacing it with dyskinesia? When you look at it that way, aren't you being a bit foolish? The cost in money as well as in the eventual loss of movement, when the levoldopa ceases to function, all seem to be a total waste. Please put me straight on this.

    While I am stirring a little, I keep wondering why articles often make the statement that our dopamine producing cells die, when attacked by Pd. But, those 'dead' cells do not get removed by apoptosis. In other words they have been disabled and not killed. When the brain produces GDNF, those 'damaged' brain cells get revitalised. Am I missing something?


  • Hello John

    Re resting tremor. Mine is rather more than you describe above. For instance, it does not affect only one hand, but both, although not equally. I also have a head tremor and my right foot tremors too. Please understand this too, the resting tremor does not go away when I pick up a glass of water or cup of tea; the contents spill, everytime, despite my trying the technique you describe in your book.

    Recently, I stopped taking my Sinemet and Mucuna Pruriens for a week and I was terrible. I had to give a blood sample and it took two people to hold my less tremoring arm down so that they could take a sample. That experience made me go back on medication again to get some relief. I do not get dyskensia at all unless my impaired walking after taking my medication is diskenysia.

    My Parkinson's was diagnosed as 'tremor dominent', but at times I have wondered whether I have 'essential tremor' as well.

    I walk as you suggest, but so far it does not abate after a brisk walk and I am beginning to doubt it ever will.

    My wife is not embarrassed to be seen with me, but I am aware of feeling awkward when we are out and I am drinking tea or whatever or trying to pay for something at a checkout (so I now keep my wallet in my pocket!).

    There must be degrees of resting tremor, but I do not know how mine compares with yours.

    I hope that I have explained my situation sufficiently well for you to understand how it affects me. How do others cope with a resting tremor?


  • Yes Norton, my experience of tremor is much more akin to yours than to what John describes and it stops me doing things. I cannot control the tremor, but any attempt to consciously stop it tends to have the opposite effect; any stress also triggers or exacerbates the tremor. I take Sinemet Plus 25/100 four times a day at 4 hourly intervals but it has no effect on my tremors. In fact I am considering reducing the dose to see what effect it has since the leaflet with the Sinemet cautions that it may cause tremor! Like you, Norton, I feel awkward when out with my wife, or anyone else. Fortunately, I find people invariably kind and helpful and the folks in the pub where I go once a week with a friend know me well. Incidentally, a pint of real ale seems to have a beneficial effect in reducing my tremor - it doesn't help my increasingly awkward gait though! I only have one pint because of unwanted effects in other directions.

    I do hope these posts are read by neurologists, there must be much grist for the mill on this site..

  • Hello Plainbob

    Than you for this post, it is enlightening. I'm thinking of opening a new thread where we can go over one or two things from the past and hopefully build on them if possible. John Pepper always has something interesting to say and I hope he will join us. Your contributions would be most welcome.



  • Did you start out with a one-sided resting tremor that got worse? I fear that will happen to me.

  • Hello RacerCP

    My tremor started in the right hand eight years ago. Since then, it has progressed to my left hand, but I can still carry a cup of tea around without spilling it, unlike my right hand.



  • John

    Like Norton your description of tremor does not fit my experience either. When the meds wear off and I get tremor i also get rigidity which feels like extreme tension in all the muscle on my affected side. My fingers and toes curl and the muscle tension can be painful and it does stop me doing things. I can no longer write, type, or carry a full cup of tea, I shake too much and focusing on it only gives a few seconds of relief. Thankfully my left side isn't affected yet so I use my left hand for everything. You are fortunate your experience is different.

  • Hello Hikoi

    I can relate to much of what you describe, but without the fingers curling and the pain fortunately. I can only write when my medications give me 'on time', other than that my writing is not small as generally described in Parkinson's, but an illegible scrawl.

    I look forward to John replying to your post, but in the meantime, for the benefit of others like us, would you consider listing your medications and how much 'on time' they give you?

    Kind regards


  • Hi Norton, happy to do that but I wondered if it may be another thread topic along with date of diagnosis, any supplements. What do you think?

  • Yes, I agree entirely as this important subject is getting lost in this thread and it is getting so long that many otherwise interested people will not find it. One problem though is that I posted a similar question some weeks ago which had a flurry of interest only a couple of weeks ago. I will look it up in the next couple of days to determine if we are duplicating anything. Good suggestion.



  • Hikoi

    Please see my latest post to John Pepper who maintains that neurons do not die off and can not be resurrected, but are merely disabled. This is such an important point that I believe that he needs to expound this theory again and you will see I have suggested a new thread where he can air his thoughts again. This means that for now the resting tremor idea for a thread will be superseded or delayed for I don't know about you, but being male, I can only do one thing at a time!



  • Hello again John

    This thread is diverging a little from the original theory of why we think we got PD, into managing it. Your points are far too important to be tucked away down here and I'm concerned that many otherwise interested PwP will not see them. For instance I thought that neurons died off and you believe they can be resurrected (am I right ) because they are only disabled. I know you have mentioned this before, but I think it needs airing again for the discussion and the hope it gives. Perhaps we can open up a new thread exclusively on this theory and how we can go about bringing some of the disabled them neurons back into play. Is it worthwhile to do this or are we just going over old ground?



  • I do not believe that all neurologists, as individuals, do not want us to get better. I was attacked, at an Annual General Meeting of our National Pd Association, by a delegation of neurologists, who stated categorically that I had claimed to be cured, in my book. That is an outright lie. I state specifically in the book that I am 'not cured', several times. They Stated categorically that I claimed to be cured without the use of medication. I mention Eldepryl, the only medication I used, 53 times in my book. So that was also an outright lie. They claimed that I used the Association to sell my book. In fact, the Association asked me if they could sell my book, in order to raise funds for themselves. Another outright lie. The effect on the members, at that meeting, was to cast doubts on my integrity and hopefully put them off buying my book. Would you say that those neurologists were speaking in the interests of the patients?


  • No John, I have your book and you talk in terms of 'reversing Parkinson's' not curing! You can not stop people putting their own interpretation on what you are actually saying.

    About two weeks ago, some person on this website appeared to suggest that you were 'pushing' your book. My interpretation of you mentioning it several times here is that you do so that others of us can possibly gain from it.

    So, please do not get all defensive over what people say and in any case it tells us as much about them as it does about you!

    I am quite sure that many of us are pleased you found this website and gain from your posts even though you do harp on about walking!

    Stick with us for we are better off with your contributions.


  • According to Dr. Jakov, PD is caused by masturbation.

    My personal history supports this, so it must be true.

    (Just kidding, I'm a genetics case for sure.)

  • Parkinson_Schmarkinson

    Take yourself in hand. You don't explain why you think you are a genetics case; I feel it important to know why?



  • In answer to your Q: about rheumatoid arthritis and PD: I have Osteoperosis and in the past few decades, have beat tuberculosis, and .diabetes.

    I try to deal more in conclusive research and experiment than theory. Therefore I have researched Peace Prize winners and nominees, and other researchers of noteriety.

    Dr. Joel Wallach, a Peace Prize nominee, thru thousands of otopseys, discovered that all sickness and disease is one or more nutritional deficiencies. When these deficiencies are shored up by taking the tharaputic amount of minimum daily requirements (which is only a maintaince amount, of the deficient nutrients, the ailment goes into remission and eventually goes away. Most diseases in 3-4 months of 3x MDR then back to MDR.

    For a foundation of understanding see attachment with a complimentry copy of my book, "You Don't Need A Degree To Doctor Yourself".

    I recomment: Corral Calcium (gel or powder capsuls)

    Gelatin: real Jello, not prefab tub type, or Knox gelatin made into jello with your favorite juice.

    NOTE: Gelatin is finely ground cartiledge

    Colloidal Silver- Dr. Becker- 40 years of mresearch, found this trace mineral kills 650 disease causing organisms

    and repairs damaged DNA the blue print of each cell in your body. It turns the generic cells in your body into cells that match the damaged cells (whether by disease organism or by trama- injury) with healthy cells and your body eliminates the damaged cells until your organs and body are restored to health.

    Basically we repair the body with what we are made of: calcium for bones, gelatin for cartiledge, proteil for muscles.

    As a Live-in caregiver I recommended to a family, in Minnesota, to give their Dad, who had advanced PD, Instant Protein w/enzymes 3x MDR. In 2 months his schuffle went away, his hand dexterity came back, he stopped drulling and began to regain his speach.

  • i got my parkinsons disease in vietnam,1968-1969 . exposure to agent orange.

  • Hotrodguy

    Im in touch with someone else from the USA who took in agent Orange at the same time as you. We hope that you are coping well and that you are being well supported.



  • My husband went onto a Crestor trial. He had an enzyme that the trial was studying. That's when his tremor started and his swollen hands. We met with doctors where the study was held and they said there was no relation.

    In hindsight, though, he'd had a fall a few years before that (tired, in the dark, exiting a lecture hall, a bit of a shuffle and he hit a crack). That was a wakeup call. I think he is scrupulous and careful in all he does and worries a lot and has some anxiety now (not before).

    I think his PD might have something to do with the in utero environment of his mother (who had miscarriages and one still birth before having him). That and the stresses in his family-of-origin and work he did (retailing) caused him to burn through his dopamine-producing cells. Kind of life people getting diabetes because of diet. To sum up, environmental and psychosocial issues. A man we both knew had PD and was scrupulous too about doing everything well. Not OCD but careful in his work.

  • Thank you Quirkyme

    You really have given this some thought and I thank you for doing so, as you have come up with some points not discussed earlier in this thread. For me though, I would suspect the reaction to the Crestor trial (what is it?). If the enzyme was artificially made that would be suspect for me. The swollen hands and tremor starting afterwards would lead me to making the connection.

    For what it's worth, I have a tendacy towards OCD, always straightening things up!



  • Crestor is a statin. I looked it up on Michael J. Fox site, and it says Crestor might actually have some preventive action. As for my husband, it was probably coincidental but I do wonder since his PD came on so quickly after that. He was only on it a short time, though.

  • Thank you for explaining it for me. I dislike statins!


  • I was exposed to Chlordane - a pesticide - as a child growing up in the late 50's in NJ, USA. My father sprayed it everywhere, both outside and INSIDE our home. Although I was not raised on a farm, we were surrounded by farmland. They say now that exposure to pesticides does increase your chances of contracting a neurological disorder.

  • Hello Jazzfan53

    Thank you for responding with your story. It does appear that your developing PD may have been connected to the use of pesticides. It makes me wonder if you have any siblings who may also have any siblings with PD or is there a genetic link within your family. If not the latter, then perhaps it was the pesticide.



  • i was exposed in vietnam to agent orange. thatis how i got it. hotrodguy

  • I went to the Parkinson’s Institute in Sunnyvale CAlifornia to participate in a study called "Determinants of Risk and Progression in Genetic vs. Non-Genetic Parkinson's Disease." It turns out I have two rare mutated genes (LRRK2 [ This variant reported by 23andMe, rs34637584, also known as the G2019S mutation, is the best-studied LRRK2 SNP related to Parkinson's in individuals with European ancestry] and GBA (The GBA variant that 23andMe reports corresponds to the N370S mutation, not that I know what that even means). A double-header! They listed my risk for PD as 86.7%. This information had two good effects on me. It didn’t allow me to entertain any denial fantasies, and it took away any feeling that getting PD was my fault or anybody’s fault. It just is. When I told my older daughter that I had two rare mutations she looked me square in the eye and replied, dead-pan, “That explains a lot.”

    On top of all that, my father had PD and died last year from a fall.

  • Hello

    Sorry to hear of your father's fall and passing last year, but thank you for returning to explain the genetics.



  • Thank YOU, Norton, for initiating and monitoring this interesting discussion.

  • You are welcome and thank you for your contribution.c. This has been an interesting thread for myself too.

    Kind regards


  • I have multiple possible causes for my PD.

    1. I was born with some physical deformities including scoliosis and a fused left elbow. Dr.s think it was because of a morning sickness drug given to my Mom during pregnancy with me.

    2. I was in a bad car accident at the age of 3-4. Records are gone, but my parents believe I had some form of a head injury.

    3. I was raised on a farm. However I don't believe this as a primary cause as no family or neighbors have ever had PD. I haven't heard of even anyone in the community with PD.

    4. I had scoliosis surgery as a teenager. Shortly after release from the hospital I can now identify subtle symptoms showing up. Fatigue, muscle weakness, constipation, headaches and double vision. I had a procedure called a myleogram where dye was injected into my spine to help the surgeons use the x-rays to a better advantage. I've always felt I have never felt the same since this procedure.

    5. At the age of 45, I fell on concrete and took another below to the head. My tremor, shuffling feet, etc. started after that and was diagnosed 3 months after the fall.

  • Hello Ace1

    My, despite your tremor starting after a blow on your head at 45 years of age it is interesting to note that you had a difficult start at birth so it may have been developing for many years. Rex25 felt that his started at birth too.



  • Hi Norton. There must be few amongst us, who did not have a head injury as a result of a fall as a child. The farm connection to Pd is generally related to crop spraying. Not all farms do crop spraying. It is the injestion of the chemicals, while crops are being sprayed that has to be taken into accouint. STRESS is, to the best of my knowledge, not a cause of anything. It triggers many conditions, which are possibly lurking in the background.Mercury in the teeth can and does cause Pd. If you think that the mercury in your teeth does not get into the bloodstream then what do you think that terrible metalic 'taste' in your mouth is, when you eat or drink certain foodstuff? Your saliva helps that 'metalic taste' to enter the bloodstream.

    I repeat my statement that no toxins can cause Pd unless you also have certain mutated genes. They go together!


  • Hello John

    All I know is that stress is a trigger to worsening my tremor which makes me think that it may be connected earlier to the development of PD.

    As for mercury in tooth fillings, well it just has to be connected, but as you say, you must have something in you susceptible to the development of PD. For example, my wife has just as many fillings as me, b does not have PD. I come from a family that show up tremors later in life, but none had been diagnosed as having PD.

    What about the number of people who have diabetes2 who go on to develop PD. Do you know much about this cause?



  • Hi Norton. I have an idea that stress lowers our imunity and as such makes the body more vulnerable to infection and the body's ability to fight any invaders. I have seen that dentists deny that amalgam can do any damage! I wonder if they have researched this matter, relative to Pd?

    We are all aware that there is more than one type of Pd. I seem to recall seeing the figure of in excess of 5 distinct types. This would mean to me that the type of mutated gene would vary the type of Pd. How does this sound to you? I will ask around at the various meetings I attend and see how many Pwp's have diabetes.



  • Hi John

    That's a new one to me as well, linked to immunity, but it would not surprise me if it wasn't an autoimmune condition in the same way that MS and RA is. As for mercury amalgam, dentist would deny any connection wouldn't they? What needs doing is some research, but who would pay for it, not dentist's!

    Yes, please ask at your meetings about the possible link between diabetes2and PD.



  • John

    ."Mercury in the teeth can and does cause Pd". This is quite a claim, is it Belief or fact and if fact what proof do you have?

  • Hi Hikoi. I will follow this up on the internet and come back to you. I get most of my info from the Northwest Parkinson's Foundation weekly news update.

    Kind regards


  • Hello John

    I like Hikoi's directness about the mercury business, but it stands to reason and knowledge, intuitively that mercury is toxic to the human body. I seem to recall from my science lesson's (yes, I did go to school) that when a mercury thermometer broke we were warned not to breath in the fumes. What also about the warnings to be aware of eating fish that have been contaminated with mercury.



  • Hi Norton. I have told Hikoi that I am going to find where I got this information and what I can find on the internet. Maybe you can all have a look, it is worth the trouble.



  • Hi Norton,

    My opinion is because I used to chew the paint off the windowsill as a child (probably lead paint) and I used to play with mercury. Actually rolled it between my fingers...from a broken thermometer......I still remember how it felt---loved it. Then, many years later, during a marital crisis, and deep depression for about 2 yrs, I began to have PD symptoms at age 40. My older sister, who also developed PD at around the same age, had just gone thru a very stressful time following my brother's critical car accident before her symptoms appeared. So, a combination of factors is what I think caused mine and my sister's. My neurologist told me stress played no part in it. I don't agree.

  • Hello Jocee

    Thank you for an interesting response to my question. I tend to agree with you about stress as I believe too much of anything can have adverse consequences on the body, but who are we to argue the point with neurologists? Tonight, I have posted a question on mercury amalgam fillings possibly causing parkinsons which you might like to read any answers we might receive.

    Thank you again Jocee


  • I have three things in my past that I wonder about now. The first is mercury. My grandparents had some in a jar and although I was told not to play with it - I did. I used to roll it from one hand to the other and dropped some that would fall into the crevices of the floor boards in the bedroom. We lived with these grandparents so I had frequent access to the mercury. The second thing was the same grandparents had huge fields of vegetables that were sold to canning factories and liquid fertilizer and insect spray were used. The final thing was a fall I had on ice covered bricks and my feet went up in the air, but I came down hitting the back of my head on the bricks. I describe the sound of my brain that I heard as an overripe watermelon sloshing back and forth in my head. Of course, I don't know what caused my Parkinson's, but I certainly do wonder whether these things contributed to or caused the disease.

  • Thank you 1730arizona. Thank you for replying to my question. You describe the possible causes of your developing parkinsons well. As you imply, there's a good chance that it was a combination of chemicals and mechanical causes.

    I look forward to reading more posts from you in the future.

    Kind regards


  • mine is I was in the wrong place at the wrong time.VIETNAM 70-71 AGENT ORANGE

  • Thank you ram927. If you have read through all these posts you will find that you are not the only one that blames Agent Orange for the possible onset of Parkinson's. I think it most likely that. I only hope that you are being well looked after by your government.

    Kind regards


  • I've been wondering if the hip transplant (partial) I had in late November of 2006 could have anything to do with it.i think it's titanium and it has given me no major problems. I'm sure metal transplants were considered in early studies. Anybody else still wondering?

  • I am a pt of PD that is what was diagnosed by neuro. but then ws given sinemet even upto 800mg per day but there was no off n on episodes so was diagnosed as PD PLUS most probababLy pure AKINESIA . i suffer from freezing gait and balance problem n there is no constipation or olfactory decline . and there is no problem with my intelligence as i can play chess bridge yery well

    i think i suffered from BPH [ BENIGN PROSTATE HYPERTROPHY ] when i took one ayurvedic med. containing [ VANG BHASM ] ie.. TIN IN VERY FINE POWDER FORM . this might have caused this problem but i have given to my pts. many times [ myself being a GP IN india for last 50 yrs.] or i might be a victim of pesticides used in india very abundently . is there is any remedy for metal poisoning whIch get fixed in brain part that is SUBSTANCIA NIGRA ? please let me know .

  • I had chemo and radiation in 2011 for breast cancer. I was told not to take any antioxidants or to eat fresh fruits and vegetables. I believe this destruction of antioxidants is what brought on the parkinsons. (Parkinsons patients are found to be lacking in glutathione, our greatest bodily made antioxidant.) I was also exposed to weed killer 10 years prior to all this coming into my classroom for a day and a half. This loaded the gun and the chemo pulled the trigger.

  • Thank you Michaela13

    On another site I was surprised to find many that there were many women who had undergone breast cancer treatment and developed parkinsons. Obviously there are many women who have had breast cancer treatment who never develop parkinsons either. Your comment about being told not to take antioxidants or eat fresh fruits and vegetables during treatment is something that I've never heard of previously and seems counterintuitive. As for lack of the antioxidant glutathione I see that some PwP have tried increasing their levels by taking a daily extract of derivative from cow's milk whey? I don't know if it improves their well being.

    Pesticides, chemicals are part of the environment we live in today and I believe you are right about the connection with developing Parkinson's, but it is difficult to know what we can do to minimise their adverse effects.

    Thank you for your interesting comments comments though.



  • Just spotted this thread, so I had to write what my thoughts are on my own personal PD. My symptoms started 2010 with a right hand tremor. Up until then I was fit and healthy. I walked every day with my dog. I have lived for the past 12 years, alone after a 30 year marriage of at times hell..

    I ended up being prescribed benzodiazepines which I became addicted to. I went though an awful time coming off them. I eventually ran a group helping other addicts.

    Things didn't improve, we lost our home, my ex. could have gone to prison. He had his mums house deeds so after all his mum and dad's years of toil they ended up with nothing, I was threatened by my ex and sat on while he held a knife and said horrid things. I lived with stress for years.

    I used to get ague and shake and my teeth would chatter. I blame him and benzodiazepines

    Now I find it difficult to help my children with my grandchildren because of my PD and guess who is a helpful hands on grandpa.? Am I bitter? Yes I am.

    I now have an over active thyroid which I am struggling with.

    How do I get past this, I don't go anywhere he might be, he makes me feel physically sick.

    Yes I blame him for PD. Am I wrong?

  • Hello Cicely46

    Your post makes heart rending reading. After being subjected to some horrific behaviour during your thirty years of marriage by your ex, you asked the question "I blame him for PD. Am I wrong?"

    After reading your post three times, it appears to me that you still give too much of your power away to him and it is doing you no good mentally which may translate into the place where you are now in respect of your health issues.

    Whilst it may be difficult for you to accept his playing 'grandad' to his and your grandchildren after what has gone on between him and you, this surely does not mean that you are a lesser grandmother. To me the best thing you can do

    Is to put much of your energy into improving your health, thereby becoming sufficiently strong so that you do not have to concern yourself with what he is doing now. Whilst I wish that I did not have'parkinson's' I believe that I have developed in deeper ways than if I did not have it.

    Remember this. Cicely, when it comes time to leave this earth, we can take nothing with us, but leave our reputations behind. Far better to be remembered for the way we treated people fairly and decently as opposed to treating them despicably.

    Finally, I so much admire you for having overcome your sleeping pill addiction and running an addicts group. You have come through adversity before and my wish for you is that you continue to do so.

    Best wishes


  • Well I come from a family of 16, 8 brothers and 8 sisters. There is absolutely no sign of parkinsons or even a tremor in my family. I'm guessing my parkinsons is the result of a combination of things.

    In my early 30's I had a car accident in which I received a blow to the head with a bump the size of an egg.

    I was working at a plant when one day we had a anomia leak I was caught in the white smoke of that for about a minute. At a hockey game I turned to speak to a lady when all of a sudden this guy took a slap shot and hit me in the temple. And in the 90's I had this strange hot and cold session where I would be shivering with the cold for about 30 seconds the I would get really hot for about 30 seconds. I was like that for about 4 hours. I'm figuring that was inflammation in the brain. Should have gone to the doctor then but NO too stubborn, That's where Iubrophen comes in. I wasn't around much pesticides but used chemicals when I was cleaning. Javex is certainly a no no.

    If I was having an ON day and I was to use Javex I would automatically shut down.

    So a combination of blows to the head, ammonia leak and inflammation in the brain is how I think I got Parkinsons.

  • Alleymay1957. I see that already you have four recommends for your post. You certainly have had some traumas in your life and I fear that any one of them could cause the onset of Pd. All were frightful, but I know that ammonia can be nasty stuff when inhaled.

    I particularly note that you come from a large family with no one else suffers the same symptoms as yourself.

    No doubt that you will be trying to stop the progress from now on and I hope that we see more posts from you letting us know how you are getting on.

    Kind regards


  • I think it is because I have been a worrier, serious, pessimist and took very little joy in life. I think when you submit to joy you increase the serotonin and dopamine in your system which creates more. I also think that just before I started tremors I had major surgery, a hysterectomy, as well as the unexpected death of my niece and the trauma just took me over the edge.. This is all very unscientific but you asked what I think. Now with this diagnosis I try to laugh, let joy into my life and don't waste my time worrying.

  • Good for you RacerCP. I admire your honesty about the earlier years.



  • I do have a theory. I think I have been a fairly depressed person who doesn't really experience joy and happiness even though I have been fairly fortunate, I am suspicious and not too trusting so that I haven't allowed my brain to release dopamine or seratonan (sp) and now that I have been diagnosed I try to be happier and let joy come into my senses. It's been a liberating experience being diagnosed with this disease and I hope to keep symptoms at bay by being happier and also I try to be more assertive and not tolerate emotional abusive behavior, whereas in the past I would be passive and let it go.

  • I was diagnosed 4 years ago and they told me that I probably first got it 6-7 years before that. But can they be sure?

    As a young man back in the 60s I drove a car with a faulty petrol pump. Every so often the car would stop and I would get out, disconnect the feed, literally suck the petrol up and ram the lead back on again while spitting out the remains onto the roadway.

    I'd rate it low for taste. I didn't smoke.

    Went into a petrol station one day to pump up my tyres. Could have been 20 years ago. I was taking the caps off the valves when another car arrived and parked in front of me. Before he stopped the engine he pushed on the accelerator, must have floored it, and a whole lungful of hot chemical filth went right into me. I know it's a long time ago but it immediately came into my head when I first got the bad news.

    While mixing some garden neutrients about three years ago I noticed that there was manganese on the label. PD researchers don't like manganese. How long have I been getting manganese in my veg?

    Only the manganese (possibly) fits the timescale. So maybe someone should be asking questions of the soil people.

  • Hello Grey-stones8. I shouldn't be surprised if the fuel incident was the initiator of your subsequent development of Parkinson's! Having said that, we are exposed to so many toxins in this Industrial Age. Too late for us, but I also fear for our grandchildren; who or what is there to get a control of the situation?



  • Parkinson's is very much in my family. My mum has it and her mum had it too. So there could well be a genetic reason that I'm now having symptoms. But I also discovered recently that my mother's house, where I grew up, has lead pipes. Growing up, my parents also used a lot of chemical cleaning products, (as was the way in the 70's and 80's). So it's really impossible to know whether it's purely down genetics or to the environmental factors that we had in common, or to some combination of the two. I suspect that our genetics made it more likely for us to develop parkinson's, given the correct environmental triggers. And then these triggers happened. I'm sure that major stresses also played a part in our symptoms starting at young ages.

  • My father worked in a chemical plant making DDT, Pesticides, Herbicides and etc.My job was to shake his clothes, when he got home, I used to shake them over my head and it was like white powder floating down and as a kid pretend it was snow and try to catch it in my mouth. I used to swim in the quarry at the factory, and later learned it was the chemical company's dumping area. In the late 50' s we didn't know the dangers.

    We never had a bug, not even an ant in our home. I am the only one in my family that has Parkinson's disease,

  • Vietnam agent orange

  • 2 physical answers loom large as reasons - first = ten+ years playing rugby football and mostly as the hooker in the front row of scrum battering & barging our shoulders & neck much like rams do. 2nd - 2 back -to-back summersin a row of riding waves at the Jersey Shore and tossed headfirst into the sand bottom like a piledriver crawling out and each time feeling like i broke my neck.........#3 - psychological - an ultra high stress year at selling dental implants for Nobel w virtually no training out at Yorba Linda HQ in Cal. for 12 months of pure Hell and feeling like a fish out of the water the ENTIRE TIME.

  • Yes, TOXINS! From a thousand different places. My mother's cigarettes, the "smoke trucks" that drove through our neighborhoods pumping out plumes of DDT, my childhood dentist and his mercury laced fillings, the mercury puddle we found in the street when we were kids and played with, high school chemistry class, house paints, oven cleaner, rubber cement, leaded gasoline, the oil refineries in north east New Jersey we used to drive by to get to my grandparents house, and all the other contaminants I've come into contact with in my almost 60 years. ... At least they haven't given me cancer. (Yet!)

  • I think cropdusting of the field in front of our house may be the cause. Also, I have always used herbicides ( 24D, roundup,etc) to keep the weeds under control.

  • I took Prozac for over 20 years and wonder if it interfered with dopamine, while increasing serotonin. It was a lifesaving medicine for me, but my PD was diagnosed while I was still on it, and my MDS had me taper off (and substitute sertraline) so I could start Azilect. I think the jury is still out on the long term use of SSRIs. Would be interested in others' thoughts about this.

  • No.

  • I was prescribed Prozac in 1999 for depression I took it for 10 days then had a severe reaction which lasted for two years but gradually calmed down and left me with constant vibrating in my body. All the medical opinions were that it was all in the mind However those ideas i believe were in letters to other medical professionals which I have seen It seems none were able to make a decision that the prozac caused the problem (I was very well until I took that drug) Not until 2010 when I was quite ill and was diagnosed with PD and responded well to treatment. In 2014 after a Dat Scan It was confirmed it was PD in a letter to me. Now they changed their minds and now say the scan is perfectly normal, and they have stopped my treatment and I now feel ill again.

  • I would have been more aware about the fillings the dentists used in my teeth years ago and all the little bits I must have swallowed when they were working on them....

  • I read something today that made me think of the switch box on my water switches on at low pressure and off at when it reaches calibrated for, pressure on water reservoir....the contact hugs and kisses the equivalent of neuron, with an electrical synapse, until calibrated pressure in tank is reached....and only then contact snaps back, stops driving motor.

    I suspect high blood pressure or low oxygen.

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