This is from Dr Wahls. My question is , what's the point? Early Dx doesn't help the patient. Just means having to worry about illness or worse, being forced out of a job or career because of future problems. Maybe ignorance is bliss in this case. I braced the doc about my lack of signs and her response was things will get worse with time.
Spot the 10 early signs of Parkinson’s be... - Cure Parkinson's
Spot the 10 early signs of Parkinson’s before it’s too late
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kaypeeoh
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I agree with you, since nothing really can be done that definitively makes a lot of difference, there is no point from the point of view of the benefit of the patient/victims. Other people might derive benefit, profit, sell books and services sell consulting time, sell ratings time.
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One thing or two that might have some preventive value is to stay away from things we know can give you Parkinson's if you encounter them. Handling chemicals (in your work) such as trichloroethylene (try not to work in dry cleaning), be real sure as a farmworker that any chemicals such as paraquat or dicamba be only strictly under licensed handling, were the person handling is licensed and willing to go strictly by the label, and not be around when the wind is up, don't ever get sprayed on or be around when there is drift from other fields or other operations where they are using these... Stay the hell away from MPTP, and recreational drugs since you never know what they actually are or cut with. That's not following warning signs, it is prevention from things we know will absolutely give you Parkinson's. Maybe for sure get tested to see if you have any genetic weaknesses because then combining any of those with exposure to any of the above chemicals might just land you with Parkinson's from doubling up on the factors... And yes, that just might be worth doing right now... Take it from any of us who have Parkinson's, it is definitely worth getting a genetic test because Parkinson's is something that is definitely worth not getting and if you can prevent increasing your chances because you know you already have a genetic weakness, that is way better to know so you don't run a fall of some of the other things to stay away from, than doing things that will someday add to your problems producing dopamine in your brain. Way worth it.
Again, prudent prevention, But not really responding to signs and symptoms since those are going to occur inevitably if you are to have Parkinson's.
I would add to that be proactive in preventing viral or bacterial infections. The reason I think this is that it seems like when people with early Parkinson's got covid or some other serious viral infection the results have been very problematic in terms of both Parkinson's symptoms and other health issues and if long covid takes hold there are a whole host of other symptoms that are definitely threatening. Personally I believe there are other ways of slowing or to some degree reversing symptoms that I will not go into right here right now
People develop the disease and look for reasons that explain having caught it. But I doubt anyone knows for sure. My history includes years of welding using a mineral to make steel turn liquid at a lower temperature. Off the top of my head I can't remember the mineral but for years miners extracting this mineral would develop PD-like disease.
possibly manganese although there are others
"Manganism can cause tremors, muscle rigidity, slowness of movement, and poor balance. "
"What is the neurotoxic chemical in welding fumes?
Numerous studies indicate that welders may be at increased risk of neurological and neurobehavioral health effects when exposed to metals such as lead, iron, and manganese. Carbon monoxide, heat, and stress can also contribute to neurological impairments in welders"
cdc.gov/niosh/welding/about....
Manganese... Yes. Something called "Miners' xxxxx. " Maybe "manganism." Welders.
" Upon protracted exposure symptoms are more prominent and resemble those of idiopathic Parkinson's disease, as which it is often misdiagnosed, although there are particular differences in both the symptoms; for example, the nature of the tremors, response to drugs such as levodopa, and affected portion of the basal ganglia. Symptoms are also similar to Lou Gehrig's disease and multiple sclerosis."
And this, meaning once you get it it's too late, another one to try not to get in the first place: " There is no specific treatment, and prevention involves avoiding high-dose manganese exposure to prevent severe neurological effects."
Yes anything or everything people can do to be proactive and preventive so that they stay as healthy as possible for rest of their lives.
I used to be a proponent of "ignorance is bliss", but now I am grateful for the chance to try and stop my RBD from progressing to PD, and I believe I am going to succeed.
I should point out to those evaluating my protocols and strategies that I hit my head on my nightstand last night jumping out of the way of a tank that was bearing down on me. I will be removing my box springs (not needed) from my bed tomorrow so if I fall out of bed it won't be so far a fall.
Thanks WhyRBD for asking me about dietary changes. I have a very strict and limited diet, but a month ago my wife found these packs of grass fed beef jerky on sale. Boy did they taste good. I probably had 10 packs over 2 weeks.
And now as I thoroughly read the ingredients (I don't always read them as I need two pair of glasses to read fine print) I see the jerky has SOY! I don't eat soy, but I sure did.
Hopefully that soy was the trigger. I stopped eating them a couple of weeks ago, so we will see.
An early diagnosis could have prevented a lot of misery and misunderstanding. In hindsight, this insidious disease has been at work in me for at least 15 years. It not only explains a range of symptoms for me but could also have fostered understanding in the outside world regarding behavioral changes, particularly for my partner, as well as for family and friends. Additionally, it could have prevented unnecessary damage to my business and clients.
With the current insights, I might have even been able to significantly slow down the progression of PD by adopting a different lifestyle and possibly even preventing my peripheral neuropathy.
You can be happy knowing you have PD, as long as you accept the disease and the process. This is difficult if you choose to bury your head in the sand.
At present I would go with the little to gain. Early diagnosis would also make for more wrong diagnoses. I was initially diagnosed with benign essential tremor.
Hello Esperanto, I would be interested to know what preventative steps you would have taken as regards peripheral neuropathy specifically. Thank you.
Even before a potential diagnosis of Parkinson's disease and peripheral neuropathy, I should have undergone a comprehensive blood test (in addition to the annual standard check-up) to measure all B vitamins. This would have revealed a deficiency in B6 and possibly B2. Both deficiencies are detrimental for these conditions. A simple low-dose bioactive B-complex or multivitamin supplement could have prevented a lot of damage.
More generally, I should have recognized my chronic stress, which undoubtedly contributed to triggering the onset of Parkinson's disease.
Thank you for your informative and interesting response. I think my ‘idiopathic’ peripheral neuropathy is probably beyond remedy now (3 years in) but at least it doesn’t seem to be progressing up from my numb toes 🤞
Just because a doctor says it is idiopathic peripheral neuropathy does not make it so. It is essential to get your B2 and B6 checked. Vitamin B2 deficiency can cause vitamin B6 toxicity even in the absence of B6 supplementation. See here for details: healthunlocked.com/cure-par....
Vitamin B6 deficiency or toxicity can cause peripheral neuropathy.
Esperanto,
Based on an MRI, I was officially diagnosed in 2019 with PD. A few months later, I began having constant pain in my feet, which is still with me until today, although I'm learning to live with it.
I have three questions please:
1) What's the difference between Peripheral Neuropathy (PN) and Restless Leg Syndrome (RLS) ? That isn how to distinguish one from the other?
2) Are the two interrelated ?
3) What's the relationship between PN/RLS and vitamin B deficiency notably B2 and B6 ?
Thanks for your attention.
Did you have a DatScan? MRIs cannot diagnose Parkinson’s.
Hello Juliegrace,
Yes, a DatScan, not a MRI, my mistake.
Thanks for your remark.
evenshoshan
1) PN involves damage to peripheral nerves, causing symptoms like tingling, a strange combination of numbness and burning pain, sometimes sharp pain as well, primarily in the feet and hands, later also in legs and arms. RLS, which I have no experience with, is characterized by an uncontrollable urge to move the legs, often accompanied by uncomfortable sensations, especially at rest. PN can be present throughout the day and often worsens at rest at nicht after significant exertion. In the case of RLS, the symptoms typically occur in the evening and at night, especially when at rest and trying to fall asleep. Poor sleep is, therefore, a consequence for both PN and RLS. The distinction lies in symptoms: PN involves persistent pain/numbness, while RLS involves an urge to move.
2) Yes, indirect they can be interrelated. PN may contribute to RLS symptoms, as nerve damage can cause discomfort that triggers the urge to move. However, they are distinct conditions.
3) Known with PN is especially the toxic effect of an overdose of B6 in the pyridoxine HCl form. Vitamin B deficiencies, particularly B1, B2/B6, and B12, can certainly lead to PN due to their role in nerve health, especially with PD medication and the possible interaction with carbidopa. B2 / B6 is also linked to RLS as deficiencies may worsen symptoms.
Esperanto,
Thank you so much for that clear cut information, much appreciated.
So agree!! I cannot understand the energy and resources put into developing tests to diagnose Parkinson's when once they diagnose all that ensues is exercise and C/L
If I'd known earlier, I'd have started vigorous exercise earlier.
I’ve been a gym rat and aggressive mountain biker and got PD anyway. No one knows diddlysquat
And I presume you followed the advice to load up on carbs which raise the blood sugar and long term high levels of blood sugar can damage the nerves over time.
No. I had a healthy diet, FYI. Still do
I don’t think I’ve heard of research that indicates that vigorous exercise prevents PD altogether. My understanding is that it’s the only proven way to forestall a worsening of symptoms (i.e., disease progression). I have concerns that my 32-year-old son is showing some signs of PD. He’s an avid cyclist, so he’s already doing the thing that a doctor would recommend. Based on that, I have opted not to say anything (for now).
You are correct. We have a number of people in this forum that were extreme exercisers before diagnosis.
Not sure. I have an identical twin and she doesn’t have PD
Hmm, not so sure about plenty of exercise being a positive. The idea is to encourage hormesis, apoptosis and autophagy. Too much exercise with no rest period, can lead to excessive stress and an acceleration of symptoms. A good rule of thumb is exercise every other day, rest and recover on the alternating days.
Everything I’ve read says minimum 150 min/wk high intensity to delay progression.
Agreed however rest and recovery is a critical aspect of the protocol.
It's interesting to read all the comments but its hard to tell why you got Parkinson's.... take my example..I was on good diet, decent BMI, gym 5 days a week, no alcohol, no smoking, no family history but still I got Parkinson's at the age of 48....when I question this to Neurologist, he only said I am one of rare cases
Only thing I can reckon is I was on lots of stress in 2018 period and it shoot up my BP and in couple of days my right leg started shaking and then right hand, so the morale of the story is..its hard to tell why you got the PD
What do you consider a 'good diet'? Without qualification that means nothing.
Good diet before PD--we always cook fresh and with spices everyday-- no frozen food, we eat many types of lentils, no red meat but yes chicken and fish, half plate full of fresh salad, eat 2 types of fruit every day, maintain 12 hours intermittent fasting- i eat my dinner at 8pm and then any solid food next day after 8am, drink 6 to 8 glasses of warm water...what else we need?????????
Why don't you eat red meat? It's the most nutritious food available? Dr Garry Fettke says that some fruit have been bred to be too sweet and are no better that sweets,
Eating red meat is associated with a greatly increased risk of cancer. References:
pnas.org/doi/abs/10.1073/pn...
A red meat-derived glycan promotes inflammation and cancer progression
"Long-term exposure to this combination resulted in a significantly higher incidence of carcinomas (five-fold increase) "
journals.plos.org/plosone/a...
"(Neu5Gc) is a non-human red-meat-derived sialic acid immunogenic to humans. Neu5Gc can be metabolically incorporated into glycan chains on human endothelial and epithelial surfaces. This represents the first example of a “xeno-autoantigen”, against which circulating human “xeno-autoantibodies” can react. The resulting inflammation (“xenosialitis”) has been demonstrated in human-like Neu5Gc-deficient mice and contributed to carcinoma progression...
individuals in the top quartile of total anti-Neu5Gc IgG antibody concentrations had nearly three times the risk compared to those in the bottom quartile"
Note that these are not the measly 10-15% increase that oftentimes make the headlines but these are manyfold increases of three to five times.
I would suggest that that study if flawed and that many of the results are skewed by the fact that it was processed meat, not the fact that it's red meat. After all humans have evolved over 3-4 million years eating mostly red meat and if it was carcinogenic the evidence would have reared it's head long ago whereas the current epidemic of cancer has risen as the consumption of processed foods has risen and the use of artificial pesticides and herbicides has increased.: youtu.be/1YG81VK6co8?si=BxYz908R2WQdm6dg
Either you did not even bother to read the abstracts of these studies, or if you did you didn't understand them. This is about compounds that are intrinsic to red meat.
Cancer has been with us since ancient times. Cancer was not even diagnosed or understood as such prior to the advent of modern medicine. Now that researchers understand that there's an issue, they are looking at the evidence and it's reared its ugly head.
You are quite the cynic
Have you had any exposure to the insecticide permethrin? Used in household flea bombs and it's even available to spray on clothing.
Maybe yes, as we have outbreak of bedbugs at our work in 2017 and contractor used spray to kill bed bugs
healthunlocked.com/cure-par...
You mentioned in this earlier post that you strongly believe permethrin caused the development of your condition. Do you still hold that belief? While permethrin cannot be considered healthy, how can you be certain that it was the cause three years before and not something else or a potential cofactor?
Personally cannot be certain, however, the evidence is strong including this animal model which developed Parkinson's after Permethrin exposure: pubmed.ncbi.nlm.nih.gov/277...
Plus the human epidemiological data showing quadrupled risk after exposure.
Thanks BP. For many years and before we got fly screens throughout the house, we had 4 automatic permethrin dispensers. I hated those things with a passion but was told that they sprayed a "safe" chrysanthemum based chemical. Perhaps my screaming intuition was trying to tell me something?
But then I was probably destined to get PD. My father had it, I was definitely exposed to Paraquat and Derris Dust as a boy and likely TCE as a young adult.
You may have unknowingly been exposed to tax or paraquat...
Well, I do agree they seem to be spending a lot of energy on "early diagnosis" when in my opinion they should be spending it on "cure".
On the other hand, for any one person I think knowing early is useful, mostly because I also believe diet and exercise make a big difference, and the sooner the better.
And I guess there could come a time when IF (and only if) they catch it early it could be treated. Then all this research will be important.
Do you have a link to this article by Dr. Wahls?
I think and I'm sure she'd agree, the sooner we know the better so we can take steps now to slow progression. I would have made a LOT of changes to my lifestyle much earlier on if I had known. Went 20 years with it slowly progressing with several prodromal symptoms, tons of doctors, tons of wasted time and energy and stress, all to find out later the symptoms were because of Parkinson's. I do understand that others prefer to not know. We must do what we feel is in our best interest.
hi kaypeeoh,
Dr Wahls’ story is quite remarkable. (Inspirational ) & definitely worth the read. She is an MD who was failed by Western medicine. And ended up wheelchair bound with MS, also thought to be irreversible. She now has regained her mobility with diet & supplements. There is some thought & success with applying her protocol to other degenerative neurological conditions, i.e. Alzheimers & possibly PD.
Why would you want anyone to know early? I think that is a VERY personal decision but it may push people to make some lifestyle changes that could potentially slow progression of the disease?
I wish so badly this disease didn’t exist, it is wreaking havoc on my young husband’s life. I think anything you can do that works for you - despite what other say, research studies done, or not done- that is what you do.
There are SO many rabbit holes to explore- almost too many, with this disease, it can be paralyzing. I appreciate this site & this input/ information available here but as the saying goes- life is like a camera. Focus on what’s important, capture the good, develop from the negative, and if things don’t turn out, take another shot!
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