DX 5 years on Dec 26th. What I’ve learned... - Cure Parkinson's

Cure Parkinson's

25,522 members26,843 posts

DX 5 years on Dec 26th. What I’ve learned about my PD. Please Read! It might be helpful.

38yroldmale profile image
36 Replies

PD is very common in my family. My dad and his dad had it. I have almost no hope they will ever cure it because it’s so complex. Here is what caused my Parkinson’s. (IMO)

1.Genetics.

This is something you cannot change. I know my genes have issues with clearing out toxins? PD is a man made disease. There is no reports on it before the Industrial Revolution. Fast COMT (how quickly you use up neurotransmitters) MTHFR, Methylation. poor ability to process vitamins ( like Pernicious Anemia that I may have)

2. Mental

This may be number 1. Neurologist say every PD patient has the same personality. Worriers, ruminanters, driven, usually successful. I believe most of us are stuck in fight or flight (sympathetic) Our bodies are designed to mainly rest and recover (parasympathetic) . Our bodies are incredibly resilient and strong. When we are constantly running away from the bear, our body can never relax. Humans are at least 100,000 years old. Our bodies can’t adjust the amount of MENTAL stress of our new lifestyle. The amount of information grown infinitely in the last couple of decades. More crap to worry about. Our hunter gathering ancestors were mainly in parasympathetic nervous system.I think that’s why there’s such an increase in Parkinson’s lately. Chinese medicine believe Parkinson is being “stuck” in sympathetic nervous system.

There are multiple ways to fix this. By far the most effective for me was Wim Hoff, breathing and cold exposure.

3. Environmental toxins.

Those with PD struggle to clear out supposedly benign chemicals/additives etc. Right after I was dx, I did a detox bath (Sea salt/baking soda/hot as you can stand water) Before the bath, I took a blood test for heavy metals/toxins/any blood test that detected toxins that came out clean. In the bath, I could only stand the bath for like 6-7 min. I literally leaked out of my calf an orange, metallic toxic junk after drinking over a gallon water within an hour. My body was detoxing hardcore. What was it that came out? I should have kept it. There are ways to help. B2, glutathione, Restore Gold (NAC, Green Tea Extract,ALA, TUDCA, Acetyl-L-Carnitive, Grape Extract), NAD+vitamin c/e are some of my favorites.

4. Diet and lifestyle.

Long term nutrition deficiencies. I believe a low b2 levels caused a ton of my issues. B2 help lower homocysteine that is correlated with PD. Most of all, MTHFR which is said to be a b2 deficiency. MTHFR struggles with removing toxins. They cannot convert folic acid to folate. It actually blocks the pathway. This is VITAL!!! Your folate levels will show fine but it’s not working well.Your most likely borderline anemic. Folate and B12 is vital for the production of blood. I was borderline anemic for many years. The ranges of blood test are not precise enough. (MCV 99 no anemia /MCV100 anemia) Who came up with the range?? Blood is key in most health. Long term low blood to the brain??? Diet soda, high carb, low nutrients food. MTHFR cannot process synthetic vitamins. These synthetic vitamins are harmful. In the late 90’s, the FDA decided to enrich flour with synthetic vitamins. This is causing huge problems. 30-40% of the population have a form of MTHFR. Unintended consequences. Pernicious Anemia is way under recognized. The synthetic b12 cannot be processed in my body. That’s the standard treatment for low b12 in the USA.

This has pretty easy solutions. B2 is the single most important vitamin for me. 0 side effects. Everyone with Parkinson needs to supplement with this. It’s non-toxic, no side effects and dirt cheap. They actually had a study Treated PD patients with just b2 and removed red meat. They had amazing results. Modern medicine has completely discounted it for 20 years.

5. Autophagy!!!

It’s basically a self cleaning mechanism for the cells. Parkinson’s is caused or is correlated with a buildup of a toxic protein in the brain. Autophagy literally eats messed up cells. You can read my posts on this. Basically, it can be instigated with multiple modalities. Fasting, HIIT training and Sauna are my go to ways. Intermittent fasting is key. every so often go on a long-term fast like five days. it sounds difficult but you can do it if you can get past day two. Day 4-5 are wonderful. The longer the fast, the more powerful autophagy. Eating the same amount of calories but in a smaller window of time. One meal a day? Our ancestors went long time without eating. When our bodies don’t have enough calories, they literally eats the weak and messed up cells. It’s really not as hard as you imagine. if you have Parkinson’s, you have will. They had to study eliminated the ability for mice to reach autophagy. They died of neuro degenerative diseases. I have had a problem with sleepwalking and eating for over 20 years. I never fasted long enough, even overnight to reach autophagy. I know this 20 years most likely caused me to have Parkinson’s early.

HIIT exercises are promoted for PD. It’s also the best way to reach autophagy. Regular use of Sauna has a 60+ percent reduction in neuro degenerative disease. More autophagy. Cold exposure I believe also induces autophagy but the studies are mixed. Making our bodies more resilient is the key to Health. Again, Wim Hof can control his autonomic nervous system with his mind. Please study his method. It’s life changing.

I wish when I was diagnosed, I would’ve been able to read something like this to give me hope. Hope is the most important thing in Parkinsons. I believe with Laura Michely that Parkinson’s can be treated more like diabetes, rather than a progressive downhill disease. She has treated people that have not progressed for like 10 years. Parkinson’s is about tomorrow, the worry of what tomorrow will bring. I believe I’ve stopped it. Seriously. I’m the same amount of levedopa as I started 5 years ago. In a lot of ways I feel better. I may be able to get completely off the medicine. Number one you need to control your mind. The Wim Hof method has done this for me. Doctors thought the 60-80 percent of neurons that caused PD were dead when your dx. Now some think they don’t actually die till late in the disease. Some recovery is possible after you stop the disease. Four of the five years, I’ve been diagnosed, I forgot how to live. I was basically a guinea pig. I was constantly obsessed with Parkinsons. I suffered more than I can imagine. I think I figured a lot of vital information. If anyone wants to talk to me,, I’d be happy to talk. PM me. There’s some of the best advice I’ve ever heard with Parkinson’s is to live like you don’t have it.

My way of beating PD is to live!!! Merry Christmas.

mdpi-res.com/d_attachment/n...

Written by
38yroldmale profile image
38yroldmale
To view profiles and participate in discussions please or .
Read more about...
36 Replies
Bolt_Upright profile image
Bolt_Upright

Great post. Thanks.

"Regular use of Sauna has a 60+ percent reduction in neuro degenerative disease". Do you have anything on this?

I found this from 2017: Sauna bathing is inversely associated with dementia and Alzheimer's disease in middle-aged Finnish men pubmed.ncbi.nlm.nih.gov/279...

"Conclusion: in this male population, moderate to high frequency of sauna bathing was associated with lowered risks of dementia and Alzheimer's disease. Further studies are warranted to establish the potential mechanisms linking sauna bathing and memory diseases."

38yroldmale profile image
38yroldmale in reply to Bolt_Upright

from the study

The KIHD studies also revealed that frequent sauna use was associated with reduced risk of developing age-related neurodegenerative conditions such as dementia and Alzheimer's disease, in a dose-dependent manner. Men who reported using the sauna 4–7 times per week had a 66% lower risk of developing dementia and a 65% lower risk of developing Alzheimer's disease, compared to men who reported using the sauna only once weekly (Laukkanen et al., 2017).

38yroldmale profile image
38yroldmale in reply to 38yroldmale

sciencedirect.com/science/a....

Bolt_Upright profile image
Bolt_Upright in reply to 38yroldmale

Thanks.

Fumaniron profile image
Fumaniron

motivating!!

Reading your post, esp the mental section, I recognized myself. It’s my HwP, but I have serious arthritis. I have only subscribed to the PD section of Health unlocked, I need to look further.

rebtar profile image
rebtar

Thank you. Very inspiring. Yes, my life is consumed by PD and I worry about it incessantly. ALL the people who have reversed symptoms that I know of have reversed the negativity. I think it's the hardest part. I'm not young (67) but time to pick myself up again. Stop complaining and do what I need to do!

gomelgo profile image
gomelgo

Best present ever! I'll be getting in touch. This week I was visiting a community where they had two saunas, one of which was a makeshift basement shack with three giant infrared bulbs and a space heater. I have not pooped this well on demand, ever I don't think. Sorry for the TMI, but here in the PD section it really should lose it's stigma imo.

JayPwP profile image
JayPwP

Very good post.

!!! Merry Christmas !!!

MarkPrana profile image
MarkPrana

Excellent post and insights, thanks for sharing ...

Adding to item 4, Beetroot is emerging as a potential superfood for PwP, as it also reduces homocysteine levels:

lifefood.co.uk/couk_en/blog...

Merry Christmas!

WinnieThePoo profile image
WinnieThePoo

I like the bit about living. I have put it slightly differently in the past. "there is more than one sort of wheelchair that parkinson's can put you in" and obsessive solutions are just that. Another wheelchair

But perpetuating the forum myth that PD is man made, due to toxins and didn't exist before the industrial revolution leads to a lot of hot air, wasted energy, and distraction from finding real remedies

news-medical.net/health/Par...

38yroldmale profile image
38yroldmale in reply to WinnieThePoo

I don’t get it?If I am full of it, How am I able to 1/3 my meds? I’ve cleared out my 2/3 toenails without pharmaceuticals that are so common to PD patients? I’m guess I’m full of hot air? That crap that came out during my detox is probably nothing? It’s normal for weird colored junk to ooze out of your leg. I’m modern medicine will figure it out, someday. Just like MJF saying 20 years ago they are going to have this cured in 20 years? You think it’s all physical diease? It just happens that everyone that has it has the exact same personality to some extent. Merry Christmas!

M-o-ggy profile image
M-o-ggy in reply to 38yroldmale

Hi there can u say more about the toe nails

38yroldmale profile image
38yroldmale in reply to M-o-ggy

It’s common for toenails on your 2 toes next to your big toe to get cloudy and yellow. I’ve had it on my Parkinson side for as long as I can remember. when I stopped my therapy, the disease started to move to my good side. My toenails on that side started to cloud over. What I was doing and the Parkinson’s went away from My good side and my toenails cleared up. With my Current therapy I’ve almost completely cleared up my Parkinson side toenails.

WinnieThePoo profile image
WinnieThePoo in reply to 38yroldmale

Much simpler. I'm saying that if parkinson's disease can be identified in written Chinese, Indian and Greek literature over 2000 years ago, stating

"PD is a man made disease. There is no reports on it before the Industrial Revolution."

Is incorrect and unhelpful

Simples

38yroldmale profile image
38yroldmale in reply to WinnieThePoo

Modern medicine doesn’t really even know what PD is? Because they have reported Tremors a long time ago? Tremors can be caused by lots of things. Many people disagree. Maybe our modern stress and information overload could not be the cause either? Our 100,000 year old human bodies haven’t evolved to handle this much stress. You never answered my question?

WinnieThePoo profile image
WinnieThePoo in reply to 38yroldmale

I couldn't identify a question. Lots of statements with a question mark on the end. What would you like answered?

WinnieThePoo profile image
WinnieThePoo in reply to 38yroldmale

Tremors? Really? Let's go back 3000 yesrs

An Ayurvedic medical treatise from the 10th century B.C. describes a disease that evolves with tremor, lack of movement, drooling and other symptoms of PD. Moreover, this disease was treated with remedies derived from the mucuna family, which is rich in L-DOPA.[3] Galen wrote about a disease that almost certainly was PD, describing tremors that occur only at rest, postural changes and paralysis.

Esperanto profile image
Esperanto in reply to WinnieThePoo

Before you claim that someone is providing incorrect and unhelpful information, you should first verify your own claims. It is true that in ancient times, PD bij was likely present and there were probably similar causes such as genetic factors, mental issues, autophagy, lifestyle, including pollution. People worked with harmful substances such as lead, arsenic, and mercury. Additionally, particulate matter from open fires was a significant issue.

WinnieThePoo profile image
WinnieThePoo in reply to Esperanto

The claim was there was no evidence of PD before the Western Industrial Revolution. That was incorrect. The condition was described and treated with levadopa thousands of years ago.

How hard does this have to be?

You will have to find your own coping strategy for accepting that not everyone has to share your viewpoints. And a viewpoint doesn't become a fact, just because its yours.

When those actively engaged in trying to rid us of this disease succeed, it will be because they are looking in the right place. I guess if PD is caused by open fires that only takes us back to the pre -Neolithic era. But it still doesn't explain why 99% of modern people with open fires don't have PD.

But if it makes you feel better, by all means keep repeating it.

Esperanto profile image
Esperanto in reply to WinnieThePoo

I don't need to be proven right that the Romans had a higher risk of PD due to their lead water pipes 2000 years ago. You can even argue that toxins have no significant role before and even after the industrial revolution and are irrelevant to PD research, but please don't blame me for reacting to this every time. The ongoing PD pandemic, especially among young people, accompanied by a growing body of research pointing to contamination with toxins as a contributing factor, demands our full attention. For ourselves, but also as part of a strategy to eradicate PD as much as possible. Yes indeed, I will bring this up every time.

WinnieThePoo profile image
WinnieThePoo in reply to Esperanto

Recognising that toxins are likely contributory is potentially helpful, at worst harmless. A cleaner environment, and sustainable energy production, are surely worth striving for and beneficial to us all, regardless of their impact on PD development.

Extrapolating that to argue PD is wholly attributable to environmental factors, "a man-made disease, is unhelpful at best. It is not clear to me what constructive, helpful consequences flow from your insistence on this mantra. But looking in the wrong place for a cure is surely unhelpful. And there is overwhelming evidence that PD is not man-made.

If you eliminated all open fire smoke you would not eliminate PD. Likewise chemical agricultural sprays. A successful development of a cure for PD, or a preventative therapy, needs us to recognise that 99% of people exposed to any toxin or combination of toxins you care to think of do not get PD.

Fortunately your insistence on "bringing it up every time is just noise on a forum. Were it to influence decisions about research into the disease it would be positively harmful.

Looking in the right place will eventually provide a cure. And in the meantime provide better therapies than we have currently.

What does insisting the disease is man-made achieve?

Esperanto profile image
Esperanto in reply to WinnieThePoo

Perhaps we are not really in disagreement, but we both have allergic reactions to the use of certain words 😉

Of course, other factors play a role, but there is a large man-made part. Perhaps the reason why my heavily nicotine addicted sister does not have PD or is it just because she's a woman? I may not have been able to avoid my PD, but with the current knowledge, I could have delayed it for many years. But fortunately, lifestyle and environmental improvements can still be used to slow down the disease and make it somewhat manageable. I have achieved remarkable success over the past year, and it gives me hope and optimism for 2024 that we can hopefully share.

Always_hope profile image
Always_hope in reply to Esperanto

Have you read the book THE PROMISE OF LITHIUM by Thomas Guttuso MD.Very strong case that it's the LITHIUM in cigarettes that help not to get parkinsons or delay the onset with many years.

Esperanto profile image
Esperanto in reply to Always_hope

I didn't know that there is lithium in cigarettes, but it is present in the battery of e-cigarettes... I wasn't familiar with the book or the author, or any research related to PD. If it has been on the market since the 1960s, one would expect more awareness. HU has given quite a bit of attention to it. I will start by reading it.

Always_hope profile image
Always_hope in reply to Esperanto

Let me know what you think. My husband is going to try it but at the moment he is taking copper and other cofactors. You can't take lithium and copper so he will try low doses lithium later next year.He's not taking any medication at the moment.

He is also taking B vitamins daily.

WinnieThePoo profile image
WinnieThePoo in reply to 38yroldmale

"it's all mental. It just happens that everyone that has it has the exact same personality to some extent."

My Dad had parkinson's disease. He was the complete opposite of the type you describe. Don't make the mistake of believing that active participants on this forum are typical of everyone with PD

JohnPepper profile image
JohnPepper

Phew!

You say nothing about EXERCISE!

THERE IS NO MEDICATION WHICH CAN REVERSE PD SYMPTOMS! FACT!

If you really want to reverse your symptoms then start to do FAST WALKING!

Rules for FAST WALKING!

1. First warm-up.

2. Walk as fast as you can for as long as you can, then STOP.

3. Do not go for DISTANCE, YOU GO FOR SPEED!

4. When you erach ONE HOUR then STOP

5. Never walk nevery day, your muscled need time to recover.

Good Luck and keep i n touch, I want toi know how you are doingf.

I am now 89 years old and have had PD since 1992.

HOPPY NEW YEAR!

38yroldmale profile image
38yroldmale in reply to JohnPepper

John,

Thanks for your book. It was the first book I read in my PD journey. HIIT training is a form of exercise. I appreciate all the work you’ve done. Your an inspiration!

JohnPepper profile image
JohnPepper in reply to 38yroldmale

Have you tried FAST WALKING yet?

Happy New Year!

D_b_IneeD4Me profile image
D_b_IneeD4Me in reply to JohnPepper

what is the name of your book sir?

JohnPepper profile image
JohnPepper in reply to D_b_IneeD4Me

Hi. Happy New Year!

My book is 'Reverse Parkinson's Disease' and is available from Amazon

D_b_IneeD4Me profile image
D_b_IneeD4Me in reply to JohnPepper

thank you very much i will get order it today!

JohnPepper profile image
JohnPepper in reply to D_b_IneeD4Me

Thanks and Happy New Year!

John

D_b_IneeD4Me profile image
D_b_IneeD4Me in reply to JohnPepper

Thank you 🙏 I will read it. Happy new year to you as well 🙏

JohnPepper profile image
JohnPepper in reply to D_b_IneeD4Me

Enjoy!

You may also like...

autophagy and Parkinson’s

degenerative disease. HIIT training is what are the most effective ways to reach autophagy....

B2, MTHFR, OCD, B12, Inositol

with it, especially if you have a b12 deficiency like I had. It also can cause extreme anxiety!...

Parkinson's and Mitohormesis - presentation by Dr. Matthew CL Phillips

in people with Parkinson’s disease and Alzheimer’s disease, and is now applying fasting and...

What causes Parkinson's Disease in most people? Is it mostly toxins?

I believe, from all the studying I have done, that most Parkinson's is caused by toxins, i.e., Agent

I am rigidity- dominant PD ; My personal experience!

as above •Intermittent Fasting • LCHF diet •MTHFR gene test (pending). •Fast walk •Cycling •Yoga/...