When I first joined this group a little over three years ago, I breathlessly scoured every post in search of the "silver bullet" which would slow or stop the progression of Parkinson's Disease and I spent a small fortune buying virtually every supplement which seemed reasonably possible to achieve that result. At one point, I took nearly 50 pills per day. It made me feel good to actually DO something which might help my condition and it made me feel almost smug to think perhaps I could do something which was not approved by the doctors at Mayo Clinic and/or the greedy people who comprise "big pharma" -- whoever that is.
During those early years on this site, I was almost angry at the curmudgeonly veterans who didn't seem to share my excitement about the latest story about supplements or the latest success stories with fruit flies and mice. They always circled back to that dreaded carbidopa levodopa stuff even though it had horrible side effects and they weren't particularly encouraging or enlightening.
I really hope I am not becoming a curmudgeon and I will try my best to be a source of encouragement and positivity, but forgive me if I don't get as excited about the proper "therapeutic dose" of a particular supplement or the new "Parkinson's Protocol of the Day" or the latest advances with lab rats.
This is a wonderful community with many intelligent, caring people and I look forward to seeing your posts and comments every day. Virtually all of the supplements I still take and the most encouraging thing I have purchased (Coronet Duo Red Light Hat) came to my attention because of this site and I am very grateful for that. At the same time, I want to acknowledge the wisdom of many of you who came before me. If there was truly a silver bullet, we'd all be taking it by now. We are fighting a disease (diseases, I think) which varies considerably from person to person, which likely has multiple causes, and multiple components to an actual cure.
As with the stages of grief, I have come to accept my Parkinson’s Disease. At least for now, it's not nearly as bad as I expected. At least for now, I will be less mad that the "gold standard" for treatment (carbidopa levodopa) hasn't been substantially improved upon for 50 years. Maybe it has not been substantially improved upon for 50 years because it's pretty darn good! It works great for me and I need to spend less time obsessing about the latest trendy supplement and more time enjoying my life. If that makes me a curmudgeon, so be it. 😊
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I totally get it. I too have spent a small fortune of vitamins (and holistic options) for my husband. I too am less excited when someone shares an article about “cures”. I continue to fill our medicine cabinet with trendy new supplements. I am just less like to get excited about them….. prayers to you and hell yes - go enjoy your life !
Curmudgeon... hugh, I looked it up and it says "bad tempered ". I don't blame you
No healing protocol of any disease will ever succeed if collecting the disease causation data from patient is non-existent. As far as I can see the researchers ONLY involve PD patients at top ie clinical trials data and NOT at the root ie causation data because IDIOPATHIC is assumed without even consulting or investigating with the patient
I've been visiting my neurologist for 4 years now in a leading teaching hospital centre in the country, not once have i ever been interviewed, questioned or investigated for past brain injuries, exposure to toxins etc.... all they ever did is check my movements (or lack of it), assume idiopathic and then dump (more) levadopa on me. They once wanted to invite me for clinical trials (from the top, again- lame) but discontinued with me because they suspected i smoked cannabis
If I scale that up (at least there is no reason they should treat me differently), then they do the same to hundreds of other PwP here in the UK... again pretty lame. And yes, I'm also grumpy about this
This. "No healing protocol of any disease will ever succeed if collecting the disease causation data from patient is nonexistent."
I don't think cure is the right word - it should be replaced with recovery.
I don't think disease is the right word - it should be replaced with injury.
Maybe we need to reframe what it means to suffer from a neurodegenerative condition and modify our goals for recovery to mean slowing if not infact stopping the progression of neurodegeneration enabling us to enjoy a reasonable quality of life. Maybe this is what a cure or NED/remission looks like.
Will we be 100% after recovery? I don't think so and expect there will be residual effects from the injury. Like all things in life, the sooner you begin the better the outcome. The bias in medical care against functional and holistic medicine doesn't help.
You say no one has ever recovered... have you heard of Bianca Molle? She has recovered from Parkinson’s. She calls herself a Parkinson’s 'survivor' and attributes this to Qigong. She no longer has PD symptoms and takes no PD meds.mettamorphix.com/
She has described her early symptoms and they were typical PD symptoms, fatigue, tremor, pain etc. She also found ldopa drugs reduced these symptoms. When she first stopped her meds she was in a very bad state but she stuck with her qigong doing it three hours a day which helped her through it. So, yes I agree with you that many are misdiagnosed, however I think hers was Parkinson’s. I might add that I worked with her and committed to three hours qigong a day but it didn’t work for me!
We underestimate how many variations there are of PD. Perhaps Bianca and JP would fall under the umbrella of PD but a different type of PD and therefore are not at all indicative of what we associate as the normal manifestation. Dap, I recall reading that you have had slow progression for 8 years I believe? I found that encouraging. I hope I am recalling correctly.
I’m in my 12th year. My PD hasn’t progressed since I began B1 in 2017. I’ve kept to the same ldopa dosage since then, which is 200mg a day. I’m sure I’ve been lucky. I do do a lot of things, like exercise, supplements, diet, etc but I still think I’ve been lucky. I think it’s quite probable that some people have slow progressing PD.
Wow! That’s kind of you to say! I’m sure there are others giving thanks daily as I do, mainly for B1. I hope I’m able to help others in my posts and comments.
How wonderful! And uplifting! I almost stopped my B1 but you and an offline PD friend are encouraging me to continue. I know dosage is very personal but may I ask your dose?
I don’t take the sort of B1 which goes through the digestion, so it wouldn’t be comparable. I take a sublingual version that goes straight into the blood stream. As none gets lost in digestion, you need far less and it doesn’t need to be HCL. I started on one pill a day and over the years I’ve reduced this to about half. It does taste awful though and is often difficult to get.... pureformulas.com/no-shot-b-...
Very interesting and encouraging, thank you for sharing! May I ask, did you always take the sublingual form and do you take it with food, and at what time of day ... I wonder how you were able to know when to halve the dose? (Are there any other supplements or habits you find most useful?) Thank you in advance.
I started on the sublingual version then, as everyone was taking the swallow version I changed but never managed to find the correct dose, so I went back to sublingual. I knew the dose had become too high when I started to feel jittery and anxious. I take it first thing in the morning well before food. Useful habits? Walking. Playing the piano and singing. Yoga. I’m gluten and dairy free but I don’t know what difference that has made.
Crowds of people have actually recovered. Forget one minute about Qi Gong and Thiamine and have a look at High Dose Vitamin D3 administered to a highly traumatized PwP, under the supervision of neurologists:
« "Yesterday we saw a patient with onset Parkinson's disease at Dr. Coimbra's practice. The symptoms started after severe traumatic stress: The patient was robbed five times in the street within a period of three months during a political and financial crisis in his hometown in Brazil. Twice his little son of four years was taken hostage at gunpoint to make him give away his valuables. He started to have tremor of hands and neck, slurred speech, could not walk in a straight line anymore as he experienced dizziness and his leg was not moving properly. In addition he started to forget names and information e.g. the name of his favorite band or musicians he had been listening to for over twenty years.
The treatment was started with a lower dose of Vitamin D of 20,000 iu as Parkinson patients usually are not that resistant to VD3 as patients with autoimmune disorders. Doses were controlled and would have been adjusted according to the usual treatment (PTH and other standard/parameters), but the patient did fine with 20.000 iu.
In addition the patient was prescribed:
- 400 mg Riboflavin / Vitamin B2
- 960 mg of elemental magnesium (the patient did not tolerate magnesium chloride or citrate and was advised to take chelated magnesium glycinate, which he tolerates perfectly)
- 4 x 500 mcg 5 MTHF Methylfolate (this needs to be adjusted individually and should not be taken in such high doses without doctors prescription and control of personal preparameters!)
Within a few months, symptoms started decreasing, after a year he only experienced slight symptoms in his hands and legs. We saw the patient after two years of treatment: He reported that he seldom has slight problems with his memory
"I take a few seconds longer than I used to, but than the word comes out“. But as he is about to turn 60 years this might be due to a normal aging process. In addition to not having any signs of Parkinson anymore he reported that he tolerates stress much easier and keeps calm even in stressful situations now.”
Excellent initiative. Don't forget K2 even if you can make up later for the possible omission. Note: the pioneer/expert here seems to be member 38yroldmale who commented on a recent related post. Please feel free to contact him. Happy recovery.
But.,.....I still truly believe Rock Steady Boxing is better than any supplements so far, and one more but, you need to pair C/L with RSB and that will get you by for quite awhile. Supplements help you feel better for awhile but that "feel good" feeling quickly goes away. Just my opinion. 🥊
It allows us to get our frustrations out! 🤪 No really, it's non-contact. We only punch the bags. Sometimes we use bats to pound the bags (not each other).
Please my friend, please, give supplements a chance. Most are easily debunked and we must remain very cautious and be very diligent but some supplements actually make a difference. I’ve witnessed it in my father and experienced it myself.
#1 Exercise - high intensity, balance, coordination.
JC my very good friend! I see my own reflection in your post. Looking back at my own posts, you may find that the older my post, the more enthusiastic and hopeful. And the later my replies to other people's hopeful posts, the more jealousy of mice I present with!Hang in there , buddy! Between the genomic revolution and stem cell therapy , this thing is a done deal within 5 years max.
Meanwhile, I have cut my own personal supplement stack down to just B1, lithium orotate , panax ginseng, fish oil and vitamin c. As good as it gets.
I’m the opposite end of the spectrum! I will elaborate more later with my own post as time permits.
I feel so much better than when I started in November.
Sleep issues almost completely resolved
Neuropathy almost completely gone
Brain fog gone
Memory improved
Leg difficulty greatly minimized.
Supplements are part of a lifestyle overhaul that has given me HOPE because I have IMPROVED!
Jim, I totally understand what you are saying. As I said before, as an athlete diagnosed 9 years ago, I thought I had it all figured out and was going to tell everyone what they should be doing and what meds to take. Boy was I naive lol…… I’ve always been pro exercise and pro CD/LD and for us to be present in our life now with meds. I still believe that but the disease is stronger then I am, unfortunately and has robbed me of some of my confidence. I am hopeful for the approval of my DBS surgery and I believe if I can get more control of my body , it will help with the anxiety. I take heart and try to stay positive knowing that we all have each other and understand. Take care. Karen
I think yours is a valuable perspective. Self awareness and humility to acknowledge and comment on the fact that you thought you had all the answers only to realise that you didn't is a good lesson to those coming after you.
It's a very easy trap to fall into, thinking you've got PD 'figured out'.
Karen, I started out the opposite! I was certain i was doomed. My first step was researching how to make my final wishes known and how to ensure the Swiss doctors could help me facilitate my end. My car broke and I didn’t want to fix it bc I figured I wouldn’t be driving for long anyways. Initially I sure did not handle this with the emotional strength you have had!
Women like you and Laglag are examples to me that I have many years ahead!
You have given me hope!
And with that hope I am finding strength to nurture myself and protect myself as much as possible!
Christina, thank you for saying that. I have been having some tough days as of late but still trying to stay hopeful and remember there are people that have things going on worse then I do. Stay positive and and keep searching for what benefits you, and yes everyone is different but you might be the one that discovers that miracle with your tenacious research. Don’t let anyone’s negativity change who you are. Chin up. ❤️ Karen
I hear you, Jim. I remember myself staying up late at night, trying to find that magic silver bullet in a newly discovered vitamin/supplement. I have spent a considerable amount of money on Amazon.com! I was thinking it would be wise to just buy common stock and get a discount, hahaha.
If you think that it's hard on you or my husband, think again. It's more difficult on us, the care partners, as we see our better half change from day to day to a person that we never knew. . .irritable, grouchy, apathetic, and depressed. I have and still gather whatever strength I've got left to fight this cruel condition. Never give up, dum spiro spero!
As I wrote before in your misfortune, you and my husband, and everyone here in this forum and elsewhere, are fortunate you don't have other neurological conditions which progress a lot faster and are fatal.
PS. There are supplements and devices that help a lot. Of course, the best medicine is EXERCISE, EXERCISE, EXERCISE!
So true: a vicious circle, as you said. Fear is indeed at the root of this nice condition. To make things worse, Lo and behold, there is a thing called in Cognitive Behavioural Therapy "Relaxation-Induced Anxiety"...
Fear, Awe. Shock, Trauma, Paralysis...: "But Lot’s Wife Looked Back, and She Became a Pillar of Salt" (Gn 19:26).
I learnt a new word today. Never heard of it before so thanks Jim. Curmudgeon=bad tempered and old. I have been reflecting on whether PD actually changes a person’s personality. The problem is that PD creeps in on you such that you cannot pinpoint the personality change. Or is it that such characteristics are worsened by PD?But now with improvements the change is very obvious which made me very reflective of it.
Perhaps you are too introspective Jim. Any improvement should be embraced with great joy. Do not be discouraged. Yes, I too spent a great deal on vitamins and red light. I read with great happiness the improvements that you experienced and shared with us on the coronet duo. Also, of Silvestrov who shared his protocol and what helped him overcome and return to work; John Pepper who shares about the importance of mindful brisk regular exercise and he is way ahead of you Jim.
And of Zella’s husband who could paint again; John Morris who steadfastly keeps up with new research to help his mum.
Imagine what it would be without all these supplements and meds where it’s a one way street downhill. No silver bullet but anything close to it is good.
Also, do not expect it to come from mainstream either. It will take years before approval and we will all be long gone- which is why my husband takes fenbendazole ( cat deworming Med) and follows the Joe tippens protocol since his bladder CA diagnosis July 2019. He is doing well.
I am very thankful for this community where I learnt about vitamin B1, red light, ubiquinol, magnesium, probiotics PS 128, clostridium butyrate, melatonin, resveratrol, coffee berry. With vitamin B1 there were some improvements but recently with revised protocol, coronet duo and probiotics PS 128/K21 it has been amazing. All praise and glory to God who led me to this forum and all the helpful community here. Never give up and keep trying. No instant silver bullet but close to it is good enough.
I'm with you Jim . And to the responses of those that don't get it, and still believe they can service a Ferrari better than those idiot trained Ferrari technicians cos they found another web article - well. As for "I know my blend of alternative solutions is working " - Maybe just one thing did all that. Or maybe 3 - exercise, attitude and red lights. Or maybe not. But I share Jim's experience. I didn't get up to 50 supplements (maybe 20), and I'm not yet on C/L but I filter much more ruthlessly now. I also eat and drink like a human being and not a Parkinsons patient. Maybe one day it will all catch up with me, but yesterday was a great day that I lived, and today will be another one. I'm reminded of my fathers misquote of Mark Twain
"When I was 18 my parents were fools, and knew nothing, but by the time I was 25 it was astonishing how much the old couple had learned"
It’s obvious that “recovery “ means different things to different people. Everyone’s PD manifests differently and therefore will be relieved differently. So keep on searching for your own magic bullet everyone.Hope is the best cure of all!
Sincere question: you said you “filter much better now”I want to filter better as well.
Would you mind listing the info sources you turn to?
HU is wonderful , truly, but a bit like mining for gold dust in a ongoing stream of murky water. Contrary to what you said to me before, I’m not chasing rainbows. Perhaps that would be better. Instead I’m head down sifting sifting the silt hoping for a wee nugget that can help. I’ve found a few nuggets that have actually helped and by so doing have given me hope but this should not be a long term approach.
I homeschool our twins. Our vocabulary phrase of the day is Carpe Diem. Thank you for that.
I'm really pleased for you and your twins. I think Carpe diem was the heart of Jim's original post. This disease is poo, and some suffer it much worse than you, I or Jim do, but for many like us you can, and should, enjoy the things you can do and LIVE. Take a look at the levadopa or dopamine agonist thread and look at people who have been on the same therapy for 7 years or more and are OK. As my first neurologist told me "vous n'aurez pas besoin d'un fauteille (roulant).".
I don't have specific sources. Again, like Jim in his original thread, I probably won't get silly excited about fruit flies or mice. Also I'm wary of supplement addicts still manifestly not happy with their current dosage.To be a bit more positive, in my apathy I tried citicoline and was sufficiently interested, having stopped it for 4 weeks to trial again at double the dose (500mg). But one new supplement at a time. I am watching the trial results for fmt and lixisenatide. If the phase 2 lixisenatide trials are successful, especially if purpan chu is a trial centre for a phase 3 trial I will almost certainly volunteer for the trial. If not, monitor exanatide.
My fantasy hope (with huge reservations about their authorisation amateuism,) is for zhittya genesis to have a successful Mexican human trial of their fgf1 angiogenesis drug, and for it to be so effective that the ema accelerate its approval. That'll do for tonight
There was a man 2000 years ago who said "I am the son of God" and then "Love your neighbor", a very effective message and had a great following among the people. The temple priests did not like it; they could lose the monopoly and the begging; ... how to finish you know.
When science becomes cryptic it is transformed into religion and is spread by its elite priests as the word of God.
Recognize them for what they are: concerned with maintaining the monopoly of collecting begging. Whenever they feel in danger you will see them arrive and scream as hard as they can, discredit and mock; but they defend their interest. The history of medicine teaches. The science is not encrypted and can be disclosed to everyone.
Whoever implies in his speeches that you have no qualifications so you cannot understand is a slave maker, he is not working in your interest and feels FEAR.
The human being's ability to understand is practically infinite, and it is based on good communication ,truthful and non-authoritarian; by educating your children I think you will see it often.
PS Any reference to people or facts in HU CP is purely coincidental. 😜
A warm greeting from Italy with the words of an ancient religion "May the force be with you", that intelligence can better manage it and may fear stay away from our hearts.
Befitting humility... You are right, let us stay humble. You did mention the history of medicine and it certainly teaches us a lot: from the Ayurvedic times to Hippocrates and even most recently with a Genius like Jeffrey Bowles (High Dose Vitamin D3, High Dose Melatonin)(*) who, being neither a MD nor having scientific credentials, succeeded however in revolutionarizing research in the field of aging.
(*) Aka the man who scanned more than 50,000 PubMed abstracts...
"Charity is the filthiest invention of the human mind: first you steal what belongs to everyone; then you use the law and various other means to protect it. You give charity to prevent the have-nots from rebelling against you. It also makes you feel less guilty. All do-gooders feel 'high' when they do good." (UG Krishnamurti).
J. Bowles is a genius, but he still has a little way to go, in my opinion, to give us a solution to aging. That is, to get out of a simply mechanical conception of the problem and face what the ancients called "creative thinking", that is, what gives purpose and creates the "function" that determines the "structure". That is to say the terra incognita of the human mind.See the characteristics and lifestyle of the most long-lived peoples, Okinawa and Sardinia, happiness is a point.
IMO there is a close relationship between the endocrine system and the emotional state of the person. Improve the emotional lifestyle and improve the endocrine system that produces the hormones he talks about, without doing anything else. I am a practical guy.
The pineal gland seems to be the forgotten key, so far. Hence the interest in High Dose D3 (Dr Coimbra, Jeffrey Bowles), High Dose Melatonin and exposing the problems posed by Levodopa drugs whose designers ignored the difference between day and night. It is time for all PD Conscious patients of the world to wake up (JohnPepper excepted). Please also note the existence of the Pineal Gland Research journal. Yours.
Certainly you will not find it in the writings of J. Bowles or on Pub Med, but in my opinion if you are not concerned with the emotional state, the endocrine system does not work for a question of hierarchy: it was created to react to the circumstances of life based on emotions. positive or negative. Melatonin and D3 are important but if a person is prone to apathy it will not work well , and no drugs will help you permanently.There will be water but the horse does not drink.
TY CCL,And I have the highest respect for women and mothers like you who try to and educate their children with love and patience so they don't become street thugs.
They do a great job, often opposed and discouraged by the cynically money-oriented society.
They are the only hope for the future of the human race. Brava!
I realise yesterday's reply - although long, didn't really answer your question. My primary source of initial information is this forum. I pick a bit up from general media (BBC and The Guardian have both had some good stuff) . Friends, in particular a couple of scientists forward articles they think might be of interest. But mostly here
I try, when I'm interested, to get back to original source documents.
I think the main difference when it comes to filtering, is I now assume that if there is something truly important to me, I'm going to know about it. I don't need to search tirelessly for the hidden gem only I can find. I used to. I was going to cure my Parkinsons and save the world. I'd still like to - but I realise anything good, even my pet subject of poo - will progress if its going to with or without me.
I usually barely skim original posts before looking at what other people have replied. That's usually the best way, I find, of knowing whether I am going to be sufficiently interested to read the original post and its links.
When it comes to supplements, and diets, if I'm honest I have no real evidence the ones I'm on are doing anything I can feel (red light therapy is the big exception to that statement). I'm sure some supplements help with some issues (my wife is also taking turmeric and gets a very obvious benefit for the arthritis in her hands. But she has been taking my vitamin B complex too for about 6 months and telling anyone who'll listen how good it is for the menopause. She's had at least 6 serious hot flushes since I got back from the hospital yesterday evening. Another "cure" is toast!)
Just one example. In the beginning I read Perlmutters brain maker , and we went on a very low carb , gluten free diet - and I told anyone who'd listen how much better I felt, and how it was curing my PD. In the UK , the diet lapsed, and on the journey back through France my tremor was so bad I couldn't use the card machine on the petrol pump and I commented to Sue "it's catching up fast - I'm not going to be able to keep doing this anymore". 3 years on, back no a normal (somewhat Mediterranean diet) , admittedly on 1mg ER Pramipexole a day, I feel better than ever, and have no petrol pump issues.
I think that pattern has followed a number of supplements I've tried.
More importantly, I think not stressing about a disease where I'm going
to fall off a cliff with a rapid decline any day now - developing a more
confident attitude towards the disease - has had a huge placebo type
effect. And "filtering" rather than obsessively hunting everywhere just
so I don't risk missing the nugget that will save me, has been a major
contributor to that.
I think there is a big placebo influence in PD. I felt better on a gluten free diet, not because of the diet physiologically, but because a powerful placebo effect kicked in. And I think its opposite, a powerful "stress induced illness" kicked in when I thought I'd lapsed. Many people think a placebo effect is imagining things - but its actually a very real physiological effect that is manufactured by the mind. And the mind can make you ill too. I remember my Dad telling me of his national service in Kenya during the Mao Mao uprising, and a witch doctor telling a man to die - and he did within a couple of days.
Paul McKenna has something to say about this in one of his books - to the effect that whilst we might get a thrill out of a rollercoaster ride, or buying a new car, or holing a long putt, the experience is entirely internal. It is produced by an external trigger - but what we experience could be produced entirely without that external trigger -since it is a function of the brain. (In effect dreams are just that - well, mine are at least. Whilst I'm dreaming I am experiencing the same emotions of pleasure or fear that I experience when awake - but without the triggers. Virtual reality is another aspect)
So I think Jim & I are experiencing the positive effects of a kind of placebo boost - which has a very real impact on our physical health and wellbeing
Bydureon (a.k.a., Exenatide), a repurposed Type 2 Diabetes drug is now in third-stage trials in UK for stopping Parkinson’s in its tracks — results expected 2023. Testing — mice, open label, double blind — has been going on since 2010 and it has been positive every time.
According to a very sensitive test, Homeostasis Model Assessment for Insulin Resistance (HOMA-IR), 2/3 of Parkinson’s patients are supposed to be insulin resistant. IR may be treated with Bydureon (Exanatide). Just an angle that might get us one step closer to getting Bydureon.
I'm not sure if this is exactly the right link. Story is that stem cells injected into dopamine producing area become dopamine producing cells. But the monkey's immune systems attacked the foreign cells. New news is that some lab -- you'll have to look this up -- has figured out how to dial our own cells back to stem cell stage -- next experiment do experiment over again -- maybe with humans: cure!
Stem cells, plasma therapy, gene therapy, FMT, FUS, there is a tremendous amount going on that will result in the rainbow on the horizon we have been hoping for! Meanwhile, self nurture and protect ourselves the best we can!
You only talk about supliments and medication as if thise were the only known ways to slow down or even stop the progression of Pd. I am sure you have hearad me rant and rave about fast walking, and maybe you are not in the least interested in actually getting better but rather to expand your knowledge on what others have tried.
So, forgive me if I seem to be way off the subject, but isn't the subject how to low down the progression of Pd or even reversing it?
Fast walking costs nothing, it is good for everybody and a healthier body should be able to cope far better with any medical problem. So should I continue to make your mouth water with tales of having got so much better that I ahve not needed to take any Pd medication for nearly 20 years, after having suffered with Pd symptoms since 1963. Yes! almost 60 yaers, can you believe that?
Mdern modicine states emphatically that there is no CURE for Pd and I am not arguing with that, I am saying that it can be reversed and comfortably held at a much lower level if we were all to start doing three hours of high exertion exercise a week. That is 3 of the total 168 available hours every week. Need I say more?
Jim is an avid cyclist. He has posted about it before. It wasnt the subject of this post, so he didn't mention it.
Whilst it is well understood that you demand that every thread be turned into a discussion about fast walking, the thread was clearly not about exercise.
I am not selling anything or making money out of anything I am making people, AWARE that fast walking is an alternative treatment. I can understand how this affects the drug industry but IO am only interested in other Pd patients becoming aware of this OPTION!
I want as many Pd patients as I can, to know what they can achieve by doing fast walking and getting better. IT COSTS NOTHING TO DO!. If it does not work for uoi then you will have got a lot heathier and able to deal with your pd better!
Seeing as you like Mark Twain, “________ onlookers will not be able to tell the difference.” Those who know, know, those who don’t, find hope in it. Irritating as it may be to the former amongst us, I’ve concluded not enough harm done to bother with.
I beg to differ here. John Pepper's intervention is not irrelevant to the discussion. Certainly, JohnPepper is peddling another natural supplement (GDNF, if I mistake not). However, given his longevity and unique experience, he may well remain the living PD conscience of all times. It is no surprise since his healing way of living is based, as Qi Gong, on Movement, Breathing, Massage and Embodied Consciousness: in other words, a Walking Meditation. Even Feldenkrais practitioners did notice this fact. This is not all. It makes you joyful. Anandamide?
Given how enthusiastic you are about the validity of a number (at least 5, by my count) of methodologies by which one can 'recover' from PD (and according to you, 'crowds' have done so), why are you still on Madopar? Why have you not been able to 'recover'?
It's a pattern as old as time. No shortage of people willing to believe but an extreme shortage of people that have actually executed.
A key component to any success is belief, hope, and a will to succeed.
Every time someone comes along and tells people how impossible it is to succeed, they are actually diminishing that person's chance for success; it is whittling away at their (and other readers) ability to believe.
Check out Norman Cousin's, The Healing Heart. In it is an example of a hospitalized patient in dire straits that misunderstood a statement they overheard from their doctor (something about a "galloping heart" as I recall). The patient thought that was praise -- that their heart was so strong, and that the doctor believed they would get better. Because of this, the patient recovered despite the odds.
What I am talking about goes beyond placebo effect. The body has an innate ability to heal itself. Why not allow people to engage that ability in whatever way they so choose? Why must their reality be defined by your constraints?
This is a forum dedicated to a chronic degenerative condition. We are entitled to express our beliefs provided we do so in accordance with the forum guidelines. It cannot possibly be reasonably argued that we should not be able to express scepticism regarding claims of results that are no less than fantastic, are basically unprecedented, are evidently not capable of replication, and are not at all well documented.
I didn't bring up bianca molle, or John pepper, or any other form of supposed recovery from PD. Others did that. If they are so sensitive to the honest remarks of people they have never met, they should not have done so on a public forum.
If the body can heal PD, it can do so regardless of what I say about it. I have absolutely no interest in 'constraining' anyone from doing whatever they like.
I beg of you, don't make it personal once more and I guess I have already answered in the past. My own case has no importance at all, unlike JohnPepper who is a model for all peoples of the world. After one year, I am still, though on a low dose, of levodopa by accident. I was and still am I, enduring ongoing trauma and this is the main reason why I cannot wean off right now. Once the whole unusual stress is over, this will be done as naturally as JohnPepper, Dr Jeanmonod's patient and many others did. I am recovering each day.
P:S: I don't understand why you do use such words as (recovery) "methodologies" or "protocols" which are usually absent in the writings of the mentioned people.
You do not know the history of medicine otherwise you would know that even ldopa, before being used, was discredited for years by the scientific world causing, as you say: "extreme shortage of people that have actually executed.", as indeed with other discoveries.
I leave it to you to explain why, as you surely know more than anyone how profitable pharmaceutical research is, as I can see from your posts.
It would be worth trying to understand what you are going to talk about before you rant.John pepper is not peddling gdnf. Glial derived neurotropic factor is produced by Glial cells. He believes it's production in the brain is increased by his specific fast walking routine, although there is not a scrap of evidence for this, (he is confusing it with bdnf) and he manifestly doesn't understand the subject any better than you do. GDNF cannot cross the blood brain barrier, so if anyone is going to peddle it, it will need to be administered by direct implant in the brain. (Bristol University developed a device to do just that
John almost certainly does not have, and never has had parkinson's disease. No response to levadopa, no datscans, a diagnosis by a neurologist of "not idiopathic parkinson's". So forget the living embodiment stuff
Sorry for my "rant" and ignorance, Mr Know-All. I knew, thanks to Dr Hadlock in particular, that PwP were perfectionists and I even met curmudgeons. However, I must admit that your sense of humour is quite rare.
I had read one day that JohnPepper wished a study were done on GDNF and even heard of the brain one you mention. By metonymy (sure you can understand this word), I said that JP was "peddling" "another" "supplement" because someone there warned that his comment was irrelevant.
If you wish to let off more steam, go address hot unanswered questions regarding Levodopa, carbidopa and benserazide:
Mucuna Pruriens, Levodopa, Carbidopa and Benserazide : Scientific Mystery or Commercial Fraud ?
John Pepper: "I want to motivate a study on what type of exercise produces the most GDNF in the brain. It should only take 6 months to do and when we know what produces the most GDNF then millions of Pd sufferers will immediately be able to start using that exercise to help them overcome many of their Pd symptoms, as I have.".
You don't have and never had parkinson's disease. You insist on ramming your ideas down people's throats but can't be bothered to get a confirmed diagnosis after your neurologist assured you that you do not have idiopathic parkinson's disease
Walking & Dancing. JohnPepper, as Fast Walking Embodied Consciousness so useful for PwP of the world, is actually a god, just like Dancing Shiva.
"This primordial duality in unity has been described in beautiful terms in the hindu interplay between Shiva the first observer and Shakti the primordial energy and manifestation." (Dr Jeanmonod, GDNF-well aware of neurosurgeon).
I am sick and tired of your negativity! You are intrnt on trying to stop Pd patients from being able to avoid taking Pd Medication, which does nothing to slow down the progression of Pd.
I hav hyndreds od Pd patients who are doing thr fast walking and are reaping the benefits, the sam as I have.
Ypu obviously have connections with the medical profession or the frug companies, and you don't like the ideaof patients getting better.
If you want to pay f0or a DAT Scan you ,may do so!
I don't know how people think that I know what every patient I have ever helped is doing since I helped them. I get a few letters form those who do the walking and all of those are very positive . I respond to over 30 emails every day and keep emails received that are positive and supportive. Otherwise i just bin them.
I am amazed at the number of patients, who could get value from the walking but who have not bothered to try, or think they can only walk slowly. I can do nothing for them!
I never ask what medication people take because it is immaterial to me, They are all aware that if they start getting better they should be able to reducde their medication. Neurologists have a lot to do with their reticence to try.
Many neurological conditions include parkinsonisms
Idiopathic parkinsons disease is a label hung on a condition or set of conditions which are progressive and where diagnosis usually includes positive response to ldopa therapy and/or a DATscan
A condition which began 60 years ago and doesn't respond to levadopa, hasn't progressed in 60 years, has been assessed by your last neurologist as "not idiopathic parkinsons disease" (your account of his diagnosis)...
is not idiopathic parkinsons disease. It's the unlabelled, very real, and doubtless tiresome, neurological condition that John Pepper suffers from , and has managed marvellously with a positive "can beat it" attitude, and fast walking.
By definition - if its not progressed over 60 years, whatever it is, its not Parkinsons Disease.
But because its not Parkinsons disease, nobody with Parkinsons disease is able to repeat your results, although many will get a real and substantial benefit from exercising vigorously
I am one of those who has obtained great benefit (although not a reversal of progression) from regular brisk exercise, and I think I started that as a result of visiting your web site
You're welcome. We're all here trying to help each other. Keep encouraging exercise and a positive attitude, and we're singing from the same hymn sheet. But given that PD is a complicated condition or set of conditions, that's not the same for everyone, and easily confused with other neurological conditions, it's maybe best not to interfere in medication or the advice of professionals for pwp you haven't seen. It's a snowflake disease (every one is unique)
Promoting exercise, including fast walking is surely going to help a lot of people. Once again, I'm grateful to you for introducing me to the idea.
I don't want to sound like a conspiracy thorist but history tells me that the medical profession and possibly the drug industry is not interested to see or even talk about what I do. That can only be for financial reasons, which are understandable.
They don't appear to want their patients to do what I do, it is bad for business. I have not needed any medication or to see a neurologist for twenty years,
To prove to everybody that the fast walking helps my condition, whatever it is, that when I stop the wallking a can immediately feel the symptoms coming back.
Over the past three years I have been unable to walk for as long as seven mponths, during which time my tremors got worse I became a lot more clumsy, my constipation got warse and has never recovered and my insomnia has not improves yet either. They are just a few of the symptoms that have returned because I had to stop fast walking. I have been in and out of hospital several times over the past three years, but at 86 I cannot complain!
For sure, old age isn't for sissies. Sorry to hear it's catching up with you. I notice my condition worsen if I don't exercise too, although I am wary of short term fluctuations. I tried specifically your fast walking for several months. I bought a couple of walking poles to improve my walking action. It helped my PD - but then I switched to joining a gym, subsequently to regular tennis (until Covid shut the club), and now, whilst I do other stuff including tennis, swimming, and cycling, my core regular exercise is a brisk mountain walk for about an hour with the dogs every day. I correct myself when I drag my left foot, but otherwise walk normally. I found all of the exercise equally effective - fast walking JP style was no better than the others. For me.
I can see no reason why the drug industry would be interested in what you do. Nor what I do. If PWP exercising regularly and vigorously means we use less medication, then Big Pharma will just have to take it on the chin. But I don't see why they should be interested. Likewise when I benefit from wearing a red-light hat, or if I successfully manage my gut microbiome. Big Pharma won't know or care
We have obviously had different experiences of neurologists. My first, in addition to accurately diagnosing very early, recommended exercise from the outset, and drew my attention to exercise classes at his clinic, as well as Qi jong.
When my Dad was very ill in hospital, and the hospital needed to compensate for their poor care following my complaint, Naheed Khan, their top PD specialist assessed him, and effectively gave me a free private consultation at the same time. She recommended strenuous exercise at least 3 times a week (and intermittent fasting)
Recently I finished with Dr Brefel at Toulouse - it's too far to travel now I'm not on the drug trial. She assessed my PD, expressed her astonishment at how slowly it was progressing, and asked why I thought that was. Specifically, she asked me if I exercise
3 out of 3 neurologists aware of and recommending exercise. I appreciate plenty on this site have had different experiences, but if some doctors fail to promote exercise I suspect that is due to ignorance or time pressure.
What a wonderful and honest view on Pd.Having been a short time on this helpsite,I find as jimcaster says levodopa ( madopar or sinemet) are and have been the gold standard for the treatment of Pd. We all need hope for the treatment and if possible a cure for Pd,but the many supplements which mostly have not been evaluated probably may give more harm than any help.Balanced hope with proven scientific evidence.( Double blind placebo controlled trials published in peer reviewed jounnals)should be the way forward.However,if you really believe something is helpful for you,then a placebo effect of up to 40% will maybe help or indeed harm.
Jim, a person KNOWS everything, right from the beginning.
Then, disagreeing, his objections to knowledge arise.
Sometimes they are minor objections like ours to disease and its cure, but sometimes they are objections to truth that lead to oblivion and degradation for eternity.
Seeing something and claiming not to have seen it and vice versa is the first step downhill and many are already down there, resigned.
They will not see the way out even when it is available.
We don't!
we still have the ability to look, to experience and this gives us greater awareness and hope for the future despite the mistakes made from which we learn.
“Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all.” - D Carnegie
“Do not fear failure but rather fear not trying.” - Roy T. Bennett
“It does not matter how slowly you go as long as you do not stop.” -Confucius
“It’s not that I’m so smart, it’s just that I stay with problems longer.” - Einstein
I used to grow saffrons in my garden but squirrels stole all the bulbs. I may try again on my deck but for now try KK for ease - they all add up and help!
Finding Peace in Hard Times: "Yet this is not an escape. It is not about denial. It doesn’t mean you’ve stopped caring. (Can you hear the whisper of that underlying assumption?) Feeling yourself being in the moment — in this very now — is more “real-feeling” than anything your mind can produce, however earnest its observations, however in line with outer reality its reflections may appear." (J. Frazier, 27 Jan 2020).
Diagnosed in 2017 and still looking for the silver bullet. I guess we all go through similar phases and end up at the same place. Sad but it’s our reality. Progress has been slow since the mid-60s. How can WE drive to change that?
Great post.. I can relate to your search for natural medicine to improve , slow down, or dare I say it- reverse the progression! I've been taking lots of evidence based supplements targeting the brain and re-energizing brain cells. I do believe that certain supplements can help "take the edge off" some symptoms. With certain supplements I particularly notice improvements in the cognitive side ie: anxiety, mental alertness, mental tiredness, "spaced-out" feelings... Some supplements that come to mind are:
Lion's Mane, Gingko, Curcumin, Gotu Kola, Omega 3 fish oil, Grapeseed extract, Resveratrol, wheatgrass juice , to name a few.
I guess that taking 3 tabs of C/L is helping me , but I can't be certain as when I take them my hand shakes more and I feel out of it.. I'm not bold enough to reduce taking it though.
The one thing above all else that helps me feel literally my old self again is REGULAR daily exercise such as power walking, or cycling. I also lift weights to strengthen all my muscles- and now stretching is the latest exercise.
If I skip a day of exercise I notice I don't feel right.
We are in this for the long haul, and whatever we can do- natural medicine, drugs, exercise, Qigong, FUS etc.. we need to find what is best for each of us.
Thanks! Really well put. Your words really spoke to me, perhaps because I am at the same place of acceptance. I am still looking and hoping but I am at a place where I am trying to live my best life with the body I have. Carbidopa/levodopa work okay for my version of the disease with my composition and so there it is, I am choosing to live with the disease and to stop fighting for what I may never live to see - a cure for this snowflake disease. Cheers and have a good day.
Do not let the APATHY take you down. Although you may Spin it however you want, Call it “experience.” Or Diminish those who are relentless by writing them off as “naive.”
What it comes down to is not just years of dealing with this but years of accumulated brain changes resulting in increased apathy.
There is a big distinction between acceptance and resignation.
A desire to commiserate is natural but not beneficial to anyone.
I’ve been called a “yipping chihuahua” amongst other things on this forum by apathetic negative people who seek to bring others down to their level.
I refuse to go down. New here, yes I am. New to PD, no. Third generation. I’ve seen what apathy can do and how it can suck others down with you.
I don't think Jim is diminishing anybody. This forum is a great and huge table with PwP at all stages. We have everybody from the excitable recent draftees to the battle tested veterans. Everybody adds their own value to the mix. I am so, so impressed by everybody in this forum. You all are made from better metal than I am. Please keep sharing your enthusiasm AND your reality checks.
And CC: Your enthusiasm is amazing and amazingly helpful!
My broccoli sprout powder that may cure me (or cause cancer if I take too much) arrives tomorrow. I'm pretty excited about that.
Seriously, I do think the Specific Carbohydrate Diet and Zeolite Pure are helping me. My microbiome is the best it has ever been ever in my life. I am 61 years old and it has been a truly unbelievable transformation.
You are confusing constipation with a microbial analysis. You have no idea what your microbiome is like unless you have recent test results from a laboratory analysis.This forum is a daily reminder that a little knowledge can be a dangerous thing 😕
“Little knowledge” can be tempered with the humility to acknowledge ones limitations and overcome by the will and drive to seek more knowledge. Sarcasm on the other hand; I know of no cure.
It is low to belittle someone who is trying so damn hard to know , to learn , things you already do.
True I don't have a lab analysis, but I am in a bunch of FMT groups and one of the main methods of grading donors is how their poo looks on the Bristol Scale. I've gone from 5/6 to 3/4 (although I may be getting some 2 in there, something to watch out for).
The other thing they do is screen for parasites and pathogens, something I have not done.
Have you ever had good poo day 1, wretched diarrhea day 2 and good poo day 3. How much do you think your microbiome changes between day 1 and day 3?If it's that easy to change your microbiome who needs FMT?
- I've had very few good poo days that I can recall in my 61 years.
- Then 2 years ago I almost died of the flu and came out of the hospital with AFIB and knew I needed to make some changes so went no carbs with intermittent fasting and went from 225 lbs to 175 lbs in 6 months. I was surprised to find the quality of my poo improved remarkably. Not great like it is now, but pretty good. I reverted to my old habits and climbed back to 192 lbs by the time of my REM Sleep Behavior Disorder diagnosis April 2nd. I look at this whole almost dying thing as a Godsend now, as it taught me how to get a grip on my food intake.
- I don't eat out, I only see people when I shop (except for my wife) and I pretty much eat the same foods every day, so those bouts of wretched diarrhea are very rare.
If it's that easy to change your microbiome who needs FMT? That's the best question.
- As people have pointed out, I don't really know if I have fixed my microbiome. I am pretty sure I have changed it.
- I don't know if most people would call what I have done easy:
1) Intermittent Fasting every day. No cheating. (pretty sure this helps)
2) Specific Carbohydrate Diet every day. No cheating. (pretty sure this helps)
3) B1, Butyric Acid, Ceylon Cinnamon, Curcumin, Niacin, Zeolite Pure, Royal Jelly, Propylis, Fermented Foods (pretty sure the Cinnamon, Curcumin, Niacin, and Zeolite are helping. The zeolite should be removing metals and pathogens from the gut).
- I also don't know if it is even possible for PwP to fix their microbiome.
But the main reason I think people are not changing their microbiomes using the Specific Carbohydrate Diet is that they don't know about it, and (surprisingly) some people with intestinal issues DO know about it, know it works, but still can't resist the Western diet. This is the report that sold me:
The Specific Carbohydrate Diet and Diet Modification as Induction Therapy for Pediatric Crohn’s Disease: A Randomized Diet Controlled Trial Dec 2020 ncbi.nlm.nih.gov/pmc/articl...
More:
Effect of the Specific Carbohydrate Diet on the Microbiome of a Primary Sclerosing Cholangitis and Ulcerative Colitis Patient ncbi.nlm.nih.gov/pmc/articl...
So... I don't know. I have not been diagnosed with PD. I have RBD. I have a stiff left shoulder and a sore right leg, but they both SEEM to be improving. I lost my sense of smell for the most part years and years ago, but it has come back some (I can definitely smell rotting garbage. Yuck). Back before I got the flu and almost died and lost all that weight I used to say I had oldmanitis and was stiff and used to joke that age was just a number until you tried to pick something up off the floor. I used to fall asleep in the middle of the day. I feel like that 6 month no carb intermittent fasting experience gave me a glimpse into something. Suddenly I was not stiff. To the floor and back again was not an issue. Not falling asleep. ... I don't know.
Wow! I wish you well in your quest for better health, and I'm glad you are noticing benefits. I previously (1999-2001) worked for a probiotic research company , and I have since diagnosis had my faecal microbiome analysed by a professional lab, and have PD with constipation which has fluctuated from blocked for a couple of days, to totally normal over the last 4 years, (I limit myself to 5 minutes skimming facebook, and another couple skimming this forum on my visits to the smallest room).
I am pretty sure there is no direct correlation between superficial (home observed) poo quality and microbiome content.
But regardless of that it sounds like you are doing things which improve your quality of life, and that's great
YC? My comment came after many other comments and was not directed to Jim but to the general dialogue.
There are many on here who delight in diminishing those who are determined researchers or who question the norms of Parkinson’s treatments and research.
What I refer to as a lifestyle intervention has resulted in symptoms so reduced that my new neuro has said that he would not be able to diagnose me with PD. But, I have already been told “most likely Parkinson’s” “consistent with Parkinson’s” etc etc by two previous neurologist one who was ready to enroll me in a trial and the other who offered CL which I declined at the time.
• in reply to
A cynic will always say, "It was misdiagnosed!" when presented with any significant success.
• in reply to
True! Which is why I have been remiss to share on here that I have improved bc I do not want to defend myself against the chronically negative. But, a post about how supplements likely do little or nothing and my concern about how demotivating that is compelled me to.
"However, many people who begin to recover are then told by their neurologist that they never had Parkinson’s disease: they must have been misdiagnosed. Because of the new symptoms of limpness in areas that, in Parkinson’s, are supposed tobe rigid, the doctor might change the diagnosis to “multiple system atrophy.” We’ve also seen recovering patients “re-diagnosed” with parasupranuclear palsy. In either case, the doctor will eventually be proven wrong, because you will also recover from the recovery symptoms.
But you can’t blame him for guessing: he probably has never seen a person recovering from Parkinson’s disease and does not know what the recovery symptoms look like " (Dr Hadlock).
Here Here, Art! Forums such as this could only flourish and attract/benefit more people because of generous members sharing possible/useful remedies such as you do. Life is too short to be bogged down by negativity or acceptance of limitations!
It is possible to confuse Apathy and Experience. And Activity for Achievement. And there is a danger of forgetting "Carpe Diem". Keep looking, keep hoping, but filter better, and go easy on the rainbow chasing is where I think I am right now
Likewise with confusing or conflating time endured, “experience”with knowledge acquired. Confusing time endured “experience” as you put it , with time invested resulting in knowledge is silly. Experience has the capacity to contribute knowledge whereas APATHY commiserates with no thought of an intended outcome the result often being counterproductive like demotivating and depressing other people that share in your affliction.
Well Pooh, inspired by your prior advice surely based on your “experience” I’m off to put on my four hats so I can expertly tinker with my Ferrari after which I will resume chasing rainbows. Enjoy your mojitos and don’t hit your head on any branches. Cheers!
Indeed Jim! Enjoying life to the fullest, in spite of having PD can be challenging, at times, but we must not give in, and let PD take over our lives, where life becomes so difficult, that we cannot see light, at the end of the tunnel! I believe PD may, actually, be several diseases, lumped together. I have no scientific basis, or proof of this, it’s just that, like with me, it has manifested itself in a number of ways, where I feel most body systems, seem to be involved. Not everybody, with PD, gets exactly the same symptoms. Anyway, I feel that there is much more to learn, about aspects of PD, that some patients experience, and, even, the specialists, in neurology, don’t seem to have all the answers, to the riddle of Parkinson’s. So, it gets frustrating, sometimes, because having a chronic illness, not only can be debilitating, because it is there every day, but it can be discouraging, as well! We will persevere, stick together as PWP, and continue this journey, knowing that we have support, and understanding, within this ‘Cure Parkinson’s’ forum!
1st, let me dis-qualify my comment by saying I haven't read this full thread yet. (I was laid up when you posted it.) It is 1 of the better discussions = though.
I understand how you're feeling. I feel exactly the same way, but the problem is not that this forum doesn't produce silver bullets, it does, for some people, the problem is the rest of us haven't found the silver bullet & there may not be 1 for everybody.
Hi Jim, I follow all of your posts. I advocate for my brother who has Parkinson’s and I continually look for any new advances in the area. We also purchased a red hat over two years ago and found encouraging results. Since I’ve been following this disease, about 8 years now, I've seen all of those reports that a new solution and/or cure will be 2 to 3 years away but it seems the yardsticks continue to be moved on us. Lately, there has been some encouraging developments where stem cells derived from your own body can be reprogrammed into dopamine cells. Keep the faith.
Hi Jimcaster. Hope you are doing well. I'm thinking of trying the Coronet Duo. Are you still seeing benefits from using it? If yes, do you recommend it or do you wish you would have purchased a different one? Thanks!🥊
I still use it and still think it helps, although I feel like I have plateaued. I'm not sensing actual improvements like I did after the first few months, but I don't feel like I am slipping at all, either, which is all I am hoping for. I went with Coronet through wellred.com.au because I believed the Australians were ahead of the game. I would do it again.
Thanks for your reply. It sounds promising. I might give it a try. I'll keep you informed. I'm going to a wedding in Charleston, SC in October so I'll probably wait until I get back before I order it.
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