Newbie, not on medication, seeks advi... - Parkinson's Movement

Parkinson's Movement

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Newbie, not on medication, seeks advice on alternative therapies to manage PD please

Salvation1
Salvation1

Hi All,

I am looking for some advice please on alternative therapies, especially from anyone like me who has chosen not to start medication.

My story is as follows:

I was diagnosed formally 3 years ago; had shoulder pain for 2 years prior to that and have probably had symptoms for a few years prior. So probably started symptoms mid 40s.

Since then I have managed my PD medication free other than for a few moths where I tried an MAO-B inhibitor (Rasagilene), but it had no discernible effect, so I stopped it.

I am a big believer that Parkinson’s can be halted, reversed and even cured, but feel that modern medicine is looking at the disease the wrong way and is typically looking to address the symptoms rather than the root cause. I found everyone from the medical side uninterested in an alternative approach and was continually told to ‘take the meds’. As I haven’t done this I am not really being seen by anyone and trying to manage this on my own.

I tried the PD UK Forum, but got some knockbacks and negative comments, then I found Health Unlocked site, which seems to have a more positive outlook towards those trying alternative therapies. Hence, I am doing that thing that blokes don’t normally do – opening up and reaching out – in the hope of receiving some help and advice please.

At present my symptoms are: Right side stiffness, especially arm affecting motor control, writing, mousing, washing, everyday tasks etc. This has been compensated mostly by use of the left arm/hand. However I now feel that the left side may be deteriorating. I have a ‘mask face’; a definite musky smell and greasiness to skin with onset of small flaky patches (eczema?); slowness of movement; slight tremor when put under pressure e.g. putting key into lock with people queuing up behind me; periodic cramping of foot, calf and shin; slight difficulty swallowing at times; night time drooling; difficulty turning over in bed and trouble sleeping etc.

I still maintain a sense of smell; retain my ability to walk quickly; have good balance and have no issues with constipation, often going twice a day – I just eat a standard but sensible balanced diet.

I should also state I still work in a stressful job and I’ve not told anyone about my condition, though some people are starting to notice things.

Over the past 10 years I have experienced considerable lower back pain culminating in a microdiscectomy; various family deaths (many Cancer related); Family breakup issues and workplace bullying. The latest issue I am trying to cope with is a Mother who has increasing dementia. I think that it is fair to say that worry and stress have very much played/are still playing a part.

Over the last few weeks my symptoms seem to have worsened and have really dragged me down, resulting in higher levels of anxiety and worry. It has made me feel like there is little point in continuing this miserable existence, where everyday things get a little worse.

Not wanting to give up I decided to look again at the internet and came across Health Unlocked and the PWP community sharing ideas like, mannitol, thiamine, serine and mucuna treatments etc.

Basically I am now at the point where I need to try something and preferably something that others have experienced some success with.

I look forward to hearing back from the community and would like to thank in advance anyone who takes time out to post suggestions.

Thanks

58 Replies
oldestnewest

You will find some people on this group who are understandably skeptical of Parkinson's recovery. Others of us are open to the possibility.

PDRecovery.org

The Parkinson's Recovery Project is the big one. Janice Walton-Hadlock is a doctor of Chinese medicine, and has been working with people with Parkinson's for decades. Some of us here are trying her approach. Her books are available for free on the website. Her understanding of Parkinson's has evolved, to the point that she is in the middle of rewriting her main book, Recovery from Parkinson's. The first eight chapters of the new version are available. Definitely also download and read her book Stuck On Pause, the first 17 or 22 chapters of which are also available on the website. If you ever do decide to take levodopa medication, her book Once Upon a Pill is a good resource. However, JWH strongly warns that her recovery approach can be dangerous to people who are on levodopa or other Parkinson's medications (or who have taken them for more than three weeks). (Stopping the medication quickly can also be deadly.)

gezond-met-parkinson.nl/

This is a website from Emmy, who followed JWH's method (along with other approaches), and has experienced a remission of her Parkinson's symptoms. It's in Dutch, but you can use translate.google.com to translate it. She also is planning to produce her own English version.

groups.io/g/PDRecoverers

This is an email list of people interested in recovering from Parkinson's disease. (It is also focused on JWH's approach, by and large.)

youtube.com/watch?v=wAY6XmM...

An inspiring video interview with Bianca Mollé, who undertook a serious practice of healing qigong, and became symptom-free.

pdrevelation.writeas.com/in...

PD revelation is a wonderful blog by John. He is actively trying Janice Walton-Hadlock's approach.

I personally am doing a combined approach. I'm doing qigong, trying JWH's approach, and I am also trying quite a number of things like exercise, a mostly vegan diet (per Dr. Laurie Mischley's advice), and a set of supplements.

Qigong is very helpful for me. My Qigong experience:

healthunlocked.com/parkinso...

Also high-dose thiamine should not be overlooked:

highdosethiamine.org/

Elliot, so how do you feel your regime is working?

Here is my advice

Look for underlying diseases that could trigger Parkinson’s here are some examples. Leaky gut, Lyme disease heavy metal toxicity, Mycotoxins, exposure to pesticides, treat these conditions

Find you a good functional medicine doctor that will be willing to treat you without pharmaceuticals and willing to explore underlying causes of Parkinson’s

Eliminate poor lifestyle issues such as stress, poor diet, poor sleep

Get a extensive blood panel work up and address any negative findings

Start a healthy diet. There is evidence to support a keto diet is beneficial to Parkinson’s.

Do a 5 fasting mimicking diet at least two times a year

Get on a supplement regimen that includes Neuroprotective attributes coq10 fish oil, alpha lipoic acid, And many others that you can find supporting Parkinson on this website

Exercise extensively. Resistance training cardio yoga

Practice mindful activities that address your symptoms Such as active Walking that overcomes Shuffle of feet

If you have to move to Levadopa do not use the pharmaceutical but instead use Mucuna purines The natural form of levodopa. Dr. Terry wahls has a protocol.

I know you’re still working, but if you can retire Do this and focus on your health. Social Security will grant disability for Parkinson’s without any challenges, at least in my case. If you have a work disability policy and you can demonstrate that you cannot perform your job due to pd

Then you have a valid claim. If you take this path make sure you have a good attorney and your doctors all lined up with recommendations To stop working.

Like you i’ve had a diagnosis for three years and have been focused on treating this without the heavy pharmaceuticals. But luckily able to stop work and Focus on my health. I wish you luck and good health and keep up the good fight

Normanjean
Normanjean in reply to Patman60

Hi where do you get your Mucuna purines from and what dosage

Patman60
Patman60 in reply to Normanjean

capsules and powder barlowesherbalelixirs.com/s...

power 99% mucuna nutrivitashop.com/

as to dosage it varies with the person but you should be adding additional supplements to support the mucuna as per Dr Terry Wahls protocol. terrywahls.com/ you will need to find a local doctor who is trained in the protocol to buy the neuroreplete and sysreplete suppliments

rescuema
rescuema in reply to Patman60

A very high percent l-dopa Mucuna may deprive the benefits of Mucuna that contains many other synergistic beneficial compounds.

I would recommend Barlowe's, Paradise Herbs, Nutrivita or other lower percentage Mucuna with high purity (against contaminants) and COA.

intechopen.com/books/parkin...

Welcome, I hope you find lots of help from this community of wonderful folks. Here’s a link to my favorite natural person

healthunlocked.com/parkinso...

Any unnatural people you would avoid?

Not really, there’s one or two people who don’t even have Parkinson’s who have at a couple of occasions made argumentative comments but they have quickly found pwp have no time for that. But natural or unnatural were all looking for the same outcome.

I would recommend the following in order of priority given hindsight if I were to know it earlier to help to slow down the progression earlier:

1. High B1 thiamine HCL Protocol - you can read about in over the internet. More information can be obtained from their Facebook page called ‘Parkinson’s thiamine hcl’.

2. Reduce stress and anxiety. This you would need to sort out yourself. To improve your sleep and relax your mind, you could try hemp oil or CBD oil without THC.

3. Take probiotic that has bacillus subtilis with other floral probiotics and fruits for gut health and reduce constipation. For more information you can go to a Facebook page called ‘Gut bacteria against Parkinson’s’.

All the above with physical exercises.

The others like qigong, acupuncture, taking mucuna and others supplements, etc can be look at later.

In order to heal, it helps to understand the source/cause of your specific issue to address it - this is not easy for most people. It is often joked around on this forum that laboratory mice are "lucky" in that they're often cured from PD. Why? - because the scientists know exactly what caused the induced disease in those mice.

For some people, it's the toxin exposures (water contaminants, metals, mold, chemicals, drugs, pesticides/herbicides/glyphosate, etc...) nutrient deficiencies, genetic SNP's that predispose you to problems such as detox and methylation issues, accumulated oxidative stress, etc. Everyone can differ in their specific causes/symptoms, which is why PD is often referred to as a snowflake disease, and no single remedy applies to all.

As others have suggested, the basics are similar. Don't sit around (very inflammatory), identify your nutrient deficiencies, lower your exposures to inflammation and stress, eat clean/organic, identify/avoid toxins, etc. If you're lacking in dopamine and unable to exercise, you need to do what it takes to help you move around and exercise, including taking Mucuna, l-dopa, conscious movement (as with JohnPepper), etc.

In addition to what others have suggested above, you might want to look into Hair Mineral Analysis (for metals/toxins, mineral balance, etc) and also nutrient therapy with a naturopath. Most people are surrounded by daily toxins that they aren't even aware of, so an HMA may help at least as a starting point. I recommend a no-wash test such as the ones offered by Trace Elements (profile 2).

To find a nautropath, the below link may possibly help.

ifm.org/find-a-practitioner/

I didn't understand how I could possibly be deficient in any nutrient having taken good multivitamins/supplements all my life, but deficiencies in enzyme transporters and genetic mutations can cause these problems despite your conscious efforts, especially if you drink alcohols or indulge in empty calories/sugar. I highly recommend that you try either TTFD (allithiamine/lipothiamine) or high dose B1 Hcl protocol to get B1 into your brain (along with the required co-factor Mg), try a good active vitamin B complex (for MTHFR mutation, absorbency issues), supplement Zinc carefully (deficiency and dyshomeostasis very common), and most importantly avoid sitting around for long duration on top of daily exercises.

If you're constantly in a state of stress and inflammation, your body will continue to deteriorate no less heal with aging so do what you could to counter/avoid that, including practicing meditation, positive mindset, or try Qi Gong.

MBAnderson
MBAnderson in reply to rescuema

excellent

Hi,

Just logged on to find all your replies.

Thank you so much to you all for taking time out to signpost information and provide suggestions to consider etc.

Clearly there is a wealth of information for me to work through.. One thing I forgot to ask is the site protocol i.e. do I ask questions by hitting reply under the person who posted the information or do I somehow send them a direct message?

Perhaps I should have stated that I rarely use social media or sites like this, so any hints and tips to keep me on track also gratefully received.

Thanks again

rescuema
rescuema in reply to Salvation1

Yes, reply under a specific response and the person gets notified. If you simply post your reply as you did last (not under a response), no one gets notified except the person who created (yourself) or saved the post. You can also opt for a private message by using the "Chat" feature near the top or by clicking on a member's name/icon and "Message" under the profile.

Salvation1
Salvation1 in reply to rescuema

Many thanks rescuema, I am grateful for the clarification and the clear instructions you have provided.

With the amount of replies and suggestions I have already received I think I will definitely be using those reply, chat and message buttons to find out more.

rescuema
rescuema in reply to Salvation1

You're very welcome. Don't hesitate to post your concerns and questions publicly as you have already so that others (lurkers) may benefit as well unless the questions are private in nature. You tend to receive more responses out of a public brand new post than through older post replies. Your thoughtful post elicited many caring high-value responses here. It could also get rough here once in a while but try not to get discouraged by negative feedback and welcome to the forum!

Exercise your ass off, as often as you can.

If you need ldopa or another prescription PD medication (an agonist or inhibitor) to make this feasible, it is worth taking.

This thread is turning out to be quite the compilation of great advice! Someone could publish it !

I'll add a couple.

Intermittent fasting will activate the vacuoles in your cells to dispose of the garbage proteins that are choking your dopaminergic neurons.

Low dose lithium orotate is something that helps me , as recommended by a great doctor. Something worth looking into . I think you might like this book – "Nutritional Lithium: A Cinderella Story: The Untold Tale of a Mineral That Transforms Lives and Heals the Brain" by James Greenblatt, Kayla Grossmann.

Start reading it for free: a.co/0fE0qQ7

Look into the Dr Marty Hinz amino acid protocol, which is a lot of research on balancing nutritional imbalances in neurotransmitter precursors.

Good luck to you and us all!

I totally understand where you are coming from. However, I think you need to say this is what I have and life goes on. After the results of my Datscan, two months ago, my neurologist has put me on Modopar (125g x 4). I am also unsure about taking medication but my neurologist wants to see if my body responds to it and then I guess he can confirm I have Parkinsons disease. I see him in two days to review my situation and I guess decide on the next course of action. I am 52 and for about 2 /3years I had problems with my right hand, shoulder pain and a slight limp when I walked. Now those are less of a problem. I also go to a sports physio once a week ( this works wonders), the osteopath every 3 months and I am following the Wim Hoff programme ( one guy has had really positive results with this and has reduced his medication significantly. I have also read that one woman has successfully healed herself with a heavy metal detox programme. The medical medium has a range of detox programmes that I am following. I believe that following a rigorous exercise regime, introducing certain additional vitamins, eating healthily and eliminating certain food groups and introducing others is the key to recovery. It won't be overnight but it will happen.

Put together a programme from the moment you get up to the point of going to bed. It doesn't have to be one that's preparing you for the olympics but one that provides a healthy start to the day. I start with the breathing exercises of Wim Hoff and then a 3 min cold shower and that gets me motivated. Then everything else follows.

rescuema
rescuema in reply to Zuzue

"I believe that following a rigorous exercise regime, introducing certain additional vitamins, eating healthily and eliminating certain food groups and introducing others is the key to recovery. "

I want to reiterate for others the importance of this point. I am going to be controversial and advise against too much exercise, attempt to be an ultra-endurance athlete, or get overly exhausted regularly. Too much exercise can actually cause inflammation and you may end up losing/sweating out exorbitant amount of nutrients/minerals important for detox that are not easily replenished, especially when drained out of the brain. Your body needs minerals (macro and trace) and vitamins to function, detox, and generate ATP, so you want to avoid depleting the reserve. Many studies show nutrient deficiencies are the root of every health problem, so eat high nutrient organic whole foods (avoid empty calories), make it colorful (for antioxidants and phytonutrients), alternate/vary as much as possible, and be cognizant of your overall nutrient status to restore the potential deficiencies or your detoxification pathway may get/stay blocked - especially bad for PD. Because of the agricultural practices in the last few decades, the lands are stripped of nutrients and the crops are nowhere near as nutrient dense as they used to be while laced with harmful chemicals (even organic). This is also the reason why most of us need to supplement to restore the missing minerals/vitamins and endeavor to optimize detox (even stress increases the toxic load).

Have a look at fight-Parkinson’s.org.

Colin Potter, the founder of this self-help website, did loads of his own research and trying out of complimentary ways to deal with Parkinson’s to try to postpone or obviate the need for mainstream medication. For that reason, he has been vilified by organisations funded by drug companies. But you can read the info and make up your own mind. His personal story is very interesting, I’ve met him in person and he is interesting, well informed and reflective.

Another approach is fast cycling. An expert on this is Nan Little, Pedal for Parkinson’s. How to do it (subject to any health checks you may need first to assess your wellness to do this), she wrote:

‘Research shows that if you ride 3 hours per week with a 10 minute warm up and 10 minute cool down and 40 minutes at 80-90 rpm, you are most likely to reduce your PD symptoms by 35%. You should try to keep your heart rate between 60-80% of Maximum Heart Rate (MHR). MHR is determined by subtracting your age from 220. So, you are 63 so your MHR is 60-80% of 157. You change the resistance on your bike so you can keep your heart rate in that range and you can keep your cadence at 80-90 rpm. It might seem a little complicated at first, but you get used to it.‘

Also from Nan:

‘I was 62 when I was diagnosed. In the last 11 years I have followed this cycling routine and I have ridden my bike across the state of Iowa (450 miles) six times, climbed Mt. Kilimanjaro in Africa, and Annapurna Base Camp in Nepal, climbed Machu Picchu in Peru, rafted down the Colorado River though the Grand Canyon and last summer hiked around much of Mt. Blanc. We just returned from Norway on a trip to see the Northern Lights (beautiful!!). Rather than slowing us down, PD gave a great excuse to speed up life experiences.’

I hope this helps. There is so much money-making rubbish out there!

There is only one way I know to reverse the symptoms of Pd and that is FAST WALKING!

Don't say to yourself that you won't be able to do it. YOU WILL! Even people confined to wheelchairs have been able to do it, it just takes a little longer.

I am no allowed to give you my website on this site, so try Googling my name and get hold of me. I am not selling anything. I have written 3 books on the subject but you are under no obligation to buy any of them. I will give you all the info you need at NO CHARGE! Iyt just takes a lot longer that way.

rescuema
rescuema in reply to JohnPepper

JohnPepper, correct me if I'm wrong, but I seem to recall that you've noticed the best result when you fast walked every other day vs. everyday. I also recall that in your particular case, your daily intense gym workouts actually worsened your condition before you discovered your fast-walking?

Despe
Despe in reply to rescuema

Rescuema,

You are correct (sorry John for replying). We follow John's fast walking routine, and it's every other day. That way one gives time to muscles to rest. It works great for my husband and me. :) Of course, in our younger years, we did a lot more than walking!

JohnPepper
JohnPepper in reply to rescuema

Correct on both scores. When doing strenuous exercise our muscles need a day to recover, otherwise they start getting their energy from the muscle tissue and not the fat tissue. In that way you lose muscle strength and increase fat content.

I went to my gym for 24 years for 1 hour per day. For the next 2 years after diagnosis, I increased the gym time to 90 minutes every day!

Hi. mIt's me again. If you Google John Pepper and click on "Reverse Parkinson's'you can get hold of me,

Hi. Like you I am medication free. One of my therapies is photobiomodulation. Look up redlightsonthebrain. I wear a device on my head 20 mins every day which has led lights of various frequencies. I think it helps me and have used it each day for a couple of years. The research points to assisting with non motor symptoms such as apathy. Put together in Tasmania Australia.

pmmargo
pmmargo in reply to Dizlizz

I have been trying this as well! My friends who have medical education say it may prevent dementia. I'm going to do it now.

0zz65

bcowart
bcowart in reply to bcowart

What a great list of resources you wonderful people with Parkinson’s disease have posted here. Salvation1, you hit the jackpot, and also have created an opportunity for folks to share their alternative approaches to healing and treating Parkinson’s disease. After reading through the messages to the current bottom (as of early Mon 9/14/20) I see almost all of the points I would suggest looking into, and then some. I would reiterate the importance of exercise. Look into Rock Steady Boxing for Parkinson’s disease. It’s a program designed exclusively for PWP. (People With Parkinson’s). This has helped me a lot. It’s not just boxing. It’s running around, playing catch with balls while running, stretching, voice exercises, and really being aerobically pushed. A recent study I saw seemed to indicate that running was more effective than any other form of exercise when It came to Parkinson’s disease. I have tried tandem bike riding, and that was helpful too. I needed less meds when I did any of the high-intensity training.

I have looked into and attended conferences and webinars and conference calls put together by Robert Rogers (of Parkinson’s Recovery Radio Network), not to be confused with Janice Walton-Hadlock’s Parkinson’s Recovery work which is based on Traditional Chinese medicine. Robert has hundreds of interviews with alternative treatment practitioners in his Parkinson’s Radio Network project. You can hear them free online.

I have just started working with Bianca Molle on refining my chi gong practice.

Other approaches to look into:

1. Ozone therapy

2. Infrared sauna

3. Salsa and Tango dance lessons

4. Challenge your brain to learn something new, such as a new language (unless you are regularly learning new languages, in which case learn something else like playing and instrument, writing poetry, painting.

I intent to learn some new pieces on the piano.

5. Don’t give up. Read up instead. Who is doing the most interesting drug or other trials (such as UCSF).

6. Check out the movies about Parkinson’s disease therapy and treatments by Dr Laura Mischley, neurologist and PD specialist. The set of movies is extensive and affordable.

7. Oxygen and ozone therapies. I tried a lot of HBOT (Hyperbaric oxygen.)I have recently begun rectal ozone treatments. Not a lot of fun, but it can very effectively treat stealth bacteria and viruses that can be found in ticks.

8. Look into Lyme disease research. A organization to start with is Lymedisease.org. Lyme and Parkinson’s disease sometimes go together in the same body for some reason. In fact, I have a blog that has close to 1000 articles about Lyme and Parkinson’s disease and how they interact and intersect. Bobcowart.blogspot.com

Best of luck and stay in touch!

laglag
laglag in reply to bcowart

@Salvation1 Hi. I've been going to Rock Steady Boxing for 14 years and it definitely helps slow the progression.

rocksteadyboxing.org

Despe
Despe in reply to bcowart

Great response and advice! However, Dr.Mischley is not a neurologist, she is a nutritionist with 20 years of PD experience.

Rosenmu
Rosenmu in reply to bcowart

LAURIE MISCHLEY, ND, PhD, MPH, Associate Clinical Investigator, Bastyr University Research Institute, BS in Nutrition Science from Pennsylvania State University in 1997,

ND from Bastyr University in 2001, Certificate in Clinical Trials from University of Washington in 2009, PhD in Nutrition from the University of Washington in 2016,

MPH in Epidemiology from University of Washington

"...retain my ability to walk quickly..."

Maximize your walking and any other exercise to which you can habituate. For starters and throughout.

Hi.

A combination of different herbs and CBD hemp-based products could be helpful in slowing, even stopping the progression of your condition. If I were you, I would research also the benefits of herbs like: Epimedium, commonly known as Horny Goat Weed, Maca extracts, Tribulus Terrestris and L-arginine. Also very efficient are mixes of medecinal mushrooms such as: shitaki, cordycepts, reishi.

Since I am a psychotherapist, I believe that physical diseases area rooted in psyche (psychosomatic) and not always genetic as many will tell you. Find yourself a good therapist that will help you find the root cause. The journey may be long, but often rewarding as you learn about yourself.

" I believe that physical diseases area rooted in psyche (psychosomatic) and not always genetic as many will tell you. Find yourself a good therapist that will help you find the root cause."

Much truth in that, I think!

How was your diagnosis confirmed?

You will receive plenty of advice. Nobody could possibly follow it all. When trying to evaluate it a couple of questions may help

1) How confident can you be that the advice is first hand from someone truly and correctly diagnosed with Parkinsons disease?

2) How long since they were diagnosed?

There's a lot of probably well meaning advice, but relatively little successful medication avoidance from long-haulers. There are useful things, like exercise, which help tremendously - but are not a total fix.

I remember some advice given to me during my divorce when I was in denial about the situation. "Sometimes, things are as they seem"

ChrisWF
ChrisWF in reply to WinnieThePoo

Indeed. Loads of things would appear to "work" in the first few years.

Hi WinnieThePoo, thank you for taking time out to engage with my post.

In answer to your question, it about 6 years ago I noticed reduced right arm swing, some rogue clicking of the mouse due to muscle spasms in right arm/hand and pain in right shoulder leading to disturbed sleep. I asked my GP for help and was referred to an orthopaedic consultant at local hospital.

Over the next three years I was passed around and underwent MRIs for shoulder, neck and brain, then had various nerve conductivity tests etc. My shoulder pain worsened and was at the point of being operated on when a stand in consultant asked about my handwriting. I said it was slow and laboured. I could sense he was concerned, then he said that he wanted me to see a neurologist before my operation. I was seen about 12 weeks later and given provisional PD diagnosis. About 6 months later I had a DAT scan which apparently showed reduced dopamine on the left side of my brain. This was 3 years ago.

I feel very fortunate that the consultant referred me to a neurologist, because it meant some of my questions could be answered and it saved me from the unnecessary shoulder operation pain and rehabilitation. Some good came out of it.

What is driving my fear and desire to seek an alternative treatment is that my left shoulder is showing similar pattern and pain. Hence I need to start considering my options.

Thanks for the guidance. Rest assured whilst I asked the question in the hope of receiving a positive reply or two from people willing to share their advice on being med free, I realise we are all unique cases, so will be thinking carefully before making any choices.

Your concern is duly noted and appreciated though.

Thanks again.

Well like you I have just joined looking for answers on behalf of my wife who has yet to start down the medication route and like you I recognise all the symptoms. However, unlike you my wife seems to have had a personality change, once a shy person now aggressive particularly afternoon worsening in the evening. Mornings seem reasonably normal but when I am not by her side her mind runs riot. She blames previous medications for her predicament and possibly me for going along with it as not only does she not have the use of her right hand,left handed thank God, she has lost the use of her legs and now has no quality of life as she has to be lifted from bed to chair and back again by carers that attend morning and night.

However, notwithstanding the above my GP asked the doctor to call who had taken care of her while in hospital last year. well after examination he concluded from her symptoms that it was not Parkinson's but said there was something else going on in her brain and retired to consult with the doctor that had carried out a Datscan.he finalised by saying although she takes no medication which could be the cause of what I see, she could be having us all on. I am now seeking a specialist opinion from Dr. Jonathan Chan who has an interest in this and many other mental issues.

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First, because it affects your blood sugar, a critical factor in your weight and longevity. [7]

Second, in a study published in April of 2015 in Biological Psychiatry [8], women who had one or more stressful events during the previous 24 hours burned 104 fewer calories in the seven hours following a fast-food meal than women who ate a similar meal but were stress-free.

Although 104 calories per day may sound negligible...

This Adds Up To 11 MORE Pounds Of Fat...

EVERY. SINGLE. YEAR.

This is how people "get heavier as they get older" or develop that "big boned" look with age — the stress causes added weight, and the weight adds up over the years.

The bottom line is pretty clear:

Stress makes you fat (especially around the midsection)... ruins your sleep... makes you more likely to suffer from one of the six leading causes of death...

I don't think I need to beat you over the head with any more research or horror studies about the problems with stress.

You know it's bad.

Living with chronic stress is literally like eating McDonald's every single day.

In fact, the negative effects on your heart, metabolism, inflammation and sleep—are worse than sugar, meat and gluten combined.

So why haven't we solved the stress problem yet?

This is a question that has been burning inside me for years because...

Chronic Stress Burned Me Out And Nearly TOOK EVERYTHING FROM ME

My name is Wade Lightheart and about 2 years ago I crashed and burned to a crisp.

People like to throw around the word "burn out" — but I think I was one level away from being hospitalized.

I remember sitting down with my BiOptimizers co-founder, Matt Gallant, and I looked him right in the eye and said, "Every day I feel like I'm in hell."

I went to his house and got hooked up to medical grade brain scanning device and it showed I had about 25% of the brain electricity of a 75 year old man. There were probably zombies on The Walking Dead that had more brain energy than me at that time.

Worse, this burnout was making me "edgy" and more prone to anger in my relationship (plus robbing me of libido). It was killing my motivation in my business.

Ewell

Hi, Salv,

I used thiamine as prescribed by Dr. Costantini with ldopa and nothing else for 5 years, diagnosis early 2014, mild symptoms tremors since 2009. I still work full time and I am caregiver of my visually impaired wife. No known side effects.

My opinion is that given the brain injury, levodopa is essential to make up for the lower dopamine production and thiamine will keep surviving cells alive longer.

Simple and effective with a good risk and benefit ratio.

The "impossibilists" have no future, the super-precise of the web are too busy to find a solution, scientists have other interests, mice have the cure.

So we are left to ourselves;

here on HU we make sure we are all abandoned together, we will live, we will survived.

Take care to yourself.

Gio

Hi, much of your description of your symptoms are very similar to mine. I’ve had Parkinson’s for nearly 20 years, I’m 63, and I have found many ways to fight this enemy that works, at least for me. I totally agree with you about halting, reversing, and even curing this disease and I have incorporated a lot of therapies and such aimed at that goal over the years and I’ve even been able to reduce my medication, only taking 2-3 sinemet pills a day now and those I take a half a pill at a time, one half every 2 hours. One of the most irritating side affects of the sinemet is a tightening or clenching of my jaw muscle which really affects my speech and I have found through trial and error that the half results in a less clenchy feeling . I exercise, which is the one singular thing you can do to stave off the Parkinson’s, do Qigong every morning, eat really healthy, mostly all organic, lots of water and I pay serious attention to my gut health, as some research has indicated that Parkinson’s and gut health are very much linked, I play lots of brain games, stay active and moving and I’m a huge supporter of the benefits of using CBD oil and other cannabis based tinctures and the like, that I have using for the past 20 years as it has been known to have Neuroprotective properties and I use melatonin to help me with sleep and I take a variety of supplements and vitamins and I’m still very mobile and even care for my 3 grandkids as I’ve done for the past 10 years, even homeschooling them right now because of the virus. My best advice is do your research and stay well informed and move, more so, incorporate a good exercise routine into your day and stay with it. Move it or lose it as my diagnosing doctor told me, something even 30 years later I here loud and clear in my head every day. Best of everything to you.

I have similar issues and like you have been trying alternative treatments .My nutritionist thinks I have adrenal issues,so I take supplements. My chiropractor thinks I had a passing stroke which didn't show up on a MRI which I didn't have until a year and a half after symptoms of right side weakness, dragging of my right foot, muscle spasms in my right leg and tremors in right hand started a little later. The muscle therapist agrees with the chiropractor. I have been trying to go to them every 2 weeks. The integrative dr thinks Parkinson's because when I first saw him I was somewhat shuffling my feet and had hand tremors. I received 30some glutathione iv s and 30 some acupuncture treatments for a combination PST and Parkinson's. In addition I did a detox program and started the supplements. The nutritionist doesn't think it's Parkinson's. The neurologists thinks it's parkinsonism. Some similarities to Parkinson's. I have not been recommended to go on medication and would not at this time do to the horrible side effects. I have been through 2 Physical therapy sessions for about 6weeks per session and 1 OT .So I technically don't have a confirmed diagnosis. My biggest problem is with the issues of my right leg tightness and cramping and often losing feelings when I sit. I also have trouble rolling over in bed and getting out of my car. I have tons of stress which I try deep breathing, exercise, pickleball, and use a sauna 2 to 3 times per week .This all started in 2016 when I went to bed extremely upset about an issue that exacerbated that night. When I got up the next morning I was dragging my right foot and had right side weakness. I am also interested in alternative treatments for what I am experiencing. I will see my neurologist in November. I have not seen him for 2 years my last visit he laughed when I told him all the alternative treatments I was trying. His response was "I'll bet you spent a lot of money. No suggestions for going on medication.

Hikoi
Hikoi in reply to Smittybear7

Such a pity you have taken this path. Nothing is giving you relief.

Parkie-
Parkie- in reply to Smittybear7

Hello Smittybear

"I have adrenal issues,so I take supplements"

Can you share what supplements you take for adrenal issues?

Many thanks

Rosenmu
Rosenmu in reply to Smittybear7

Do you take B vitamins and magnesium, might help some with the muscle and nerve issues. Do you feel like the therapies you are doing are helping, any in particular? I'm thinking of acupuncture for my neck issues, but waiting until after PT for a different issue. I use Essential oils for many issues, a relaxing oil diffused might help with your stress issues as well as the magnesium.

Hi All,

Thank you to those who continue to reply to my post.

Having felt a bit 'in the wilderness' for so long I've been blown away by the replies. It is almost overwhelming the amount of things to look into and consider.

Clearly with so much information for me to work through it is going to take me some time. Hence, I just wanted to ask you to please bear with me as I work through everything and try to cover the questions and points raised etc. Follow up questions may be some time after your initial post.

One thing that jumps out at me is that nobody seems to have mentioned using mannitol. I seem to remember that an Israeli man launched a film of his experiences using mannitol and from the little I read I felt sure that someone was going to recommend this.

If anyone can shed any light I would be interested to receive their thoughts, although to be honest it feels like I have been given plenty to follow up on already.

Thanks again :-)

If you search Mannitol here you will find many posts.

rescuema
rescuema in reply to Salvation1

Many have tried mannitol here- just search and you'll see many past conversations. It works extremely well for a few (apathy, sense of smell, etc), some take it just in case it benefits in the long-run, but others notice nothing except flatulence and runs. If you tend to be sensitive to sugar alcohols, you should be extra careful since it is an osmotic diuretic and could cause electrolyte disturbance and mineral loss.

The below link is worth visiting.

scienceofparkinsons.com/201...

Rosenmu
Rosenmu in reply to rescuema

I would urge a person to start with a small amount of mannitol and work up, it helps my smell but causes gut upset if I'm not careful. Enzymes after taking it can help. I was impressed with the results of a study that it helped smell, I miss smelling my coffee.

I've been thinking about your question for a few days and decided to respond again. Do you know anyone that has been cured of Parkinson's using an alternative method? I don't think anyone can say they have been truly cured. I believe there are a lot of supplements and exercising you can do to slow it down a bit but I don't believe anything right now will cure it. Not to say there never will be. We can only hope and pray there's something in our lifetime. Not to be a "Debbie Downer" but it would be a good idea if they knew what causes it before they can fix it. It seems they have a lot of ideas, like dopamine, mitochondria, blood brain barrier, etc, etc, but they are not quite there yet. This site is the best thing to come to for ideas and opinions though. I have faith that someone on this site will help or be the one to figure it out.

So to end my lengthy opinion, you need to do a little bit of meds, a medium amount of supplements (which includes nutrition) and a lot of exercising (high intensity or at the very least keep moving and keep off the sofa). The meds and supplements will relieve some of your symptoms and will enable you to exercise longer and more often.

pdpatient
pdpatient in reply to laglag

Agree with you on that, laglag. I meant the part about your thesis on the hope for a cure. If they have not found any cure for cancer over all these years and after all that money, i think that the best hope that we as Parkinson's sufferers have is for disease remission or stop of disease progression.

Ever hopeful😇

Rosenmu
Rosenmu in reply to pdpatient

I will be happy for remission or slowing disease progression, even if I was cured that would only last as long as I maintained my health, same as what I'm doing now. Otherwise I would probably get some other condition. As with PD, Cancer can be put in remission with proper treatment, I have seen lots of testimonies by people that have had success with natural therapies.

Smittybear7
Smittybear7 in reply to laglag

Google Beating Parkinson's drug free. Several people claim following this man's protocol they no longer have any symptoms. Interesting

laglag
laglag in reply to Smittybear7

I've read it before and it is interesting. It may work for some but not for others. You might give it a try. Have you tried Rock Steady Boxing? It's not a cure but it slows the progression in most PwP's.

rocksteadyboxing.org

Also, limit the stress in your life as much as possible.

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