Hello, I was dx with PD in 2019. I’ve progressed to stage 3 and have tried a lot of synthetic meds. I wont take tgem if the side effects worsen my current symptoms. That excludes most. I have read a million articles on new and upcoming tests and trials. I’m tired of chasing the rabbit. Although I cant give up. So I push my body and brain using holistic modalities such as acupuncture, tapping, reiki, massage, cryo and light therapy to name just a few. Im aware we are all unique in our individual prescriptions but I literally spend HOURS UPON HOURS reading and getting my hopes up only to find that it doesn’t work. Where is the book of tested tried and true studies, holistic approaches with POSITIVE results of folks who have “been there done that” results so we can stop chasing these damn rabbits and wasting what time we have left?!?! We are already handed a disease then shoved out of the office to fin for ourselves!! My first year consisted of what is PD!! Im pissed off. I feel like I’ve gone through all the emotions so far to keep a good balance but then get to this point of floating through the galaxy alone. Like is there no one out there that sees us? Why is there not ONE SINGLE ANSWER! Elon Musk is preparing to create a community of 50,000 on another fiickin planet by next YEAR and NO ONE has even one spec of hope of a cure for the fastest growing disease in the world? (May not be the best comparison but I think you get my point) I give my body and mind grace because we didn’t ask for this disease and I cant allow this anger to rule my psyche. I can only love myself to make sure however I treat this disease that I will bring no more harm but only healing. Sorry for the rant.
Holistic POSITIVE results: Hello, I was dx... - Cure Parkinson's
Holistic POSITIVE results
There are non-prescription disease modifying treatments that I and others have found helpful. Implement the thiamine and the cinnamon one at a time and see how one works before proceeding with the other:
• High-dose thiamine. Dosing instructions and other information at the links. Allow four months for full effect:
healthunlocked.com/cure-par...
healthunlocked.com/cure-par...
facebook.com/groups/parkins...
A good source of thiamine HCl is here: vitacost.com/vitacost-vitam...
• Cinnamon. Allow two months for full effect. My report healthunlocked.com/cure-par...
• Qigong. My story here: healthunlocked.com/cure-par...
Gigi,
Lately, I've been feeling the same, so I welcome your rant.
If we're lucky, Elon will lead the way and be among the first to settle on another planet.
PS maybe he can take Ozzy Osborne with him
That'll be an interesting planet if all earths super egos end up on one rock. Wonder how long before they're bored.
Marc started it. Why a Mars Colony is a Dangerous and Stupid Idea youtu.be/U9YdnzOf4NQ?si=h6K...
Getting an effective treatment for Parkinson's on our own planet can be challenging enough, so you can imagine the added difficulties for the approximately 500 people with PD on Mars. It doesn't seem like a pleasant prospect. Hopefully HU can answer by then about preference of C/L medication or munica pruriens in zero gravity and tremors during dust storms. 🧑🚀🚀
This may be an alternative approach worth your consideration :
journals.plos.org/plosone/a...
A relevant study quote :
' Within-group analysis showed significant improvement in the GTT at 8 weeks, in the probiotic group from 125.26 (SD54.81) hours to 77.32(SD55.35) hours, p <0.001. No significant difference was observed in the placebo group. The MDS-UPDRS II (MDS UPDRS III median NMSS and median PDQ-39SI scores in the probiotic group significantly improved compared to baseline (Table 5). For the placebo group, there was significant improvement in the NMSS scores (p = 0.007) compared to baseline, but no significant improvements were observed in the PDQ-39S, MDS UPDRS II and III (Table 5). There was significant improvement in BMI in the probiotic group from 22.0 to 22.9 kg/m2 (p = 0.010) (Table 5). '
And this related post :
healthunlocked.com/cure-par...
Art
As I mentioned prior, a not so good analogy. My point was not “going” to another planet but making something so outlandish happen that people supported doing it in less than a year. If it pleases the masses it will be done. There are still chemicals being used today that cause Nuero degenerative diseases. Why? Thank you all for your input. I appreciate you!
Effectively stage 3 at diagnosis (and I am a physician ! was in mega denial .
I have had some excellent results in balance control (3 years ago ) and baseline rigidity (these last 3 months) from Feldenkrais sessions .
Thai massage weekly was good enough for reducing rigidity temporarily and had some cumulative results too. ( It has a little bit of reflexology and stretching within the technique)
I have sort of learnt to breathe better in the last 2 years and that has made me feel better.
Nothing else has worked for me but standard medication has also been great for limiting my symptoms. Without them I have sigificant bradykinesia and dystonia.
Acupuncture has been fairly underwhelming (Traditional Chinese version from 4 different practitioners) along with some Chinese herbs)
Thiamine gave me an energy boost of about 6 weeks ; I did continue for about a year , could not tolerate more than 400 mg maximum and felt better when I stopped it. I now top up with a 100mg of thiamine and small doses of B12 every 6 weeks or so.
I have always had regular quantities of many of the natural plant sourced supplements in my diet partly because I am of Indian origin and also because I am an adventurous cook (organic turmeric, cinnamon, black pepper, coconut oil, moringa were staples for me supplied from my back garden in my Indian home but also have a lot of brocolli , apples and berries since living in England (30+ years) and even have a cupful of berberries and dried citrus peel as salad garnish after an Iranian colleague introduced me to them several years ago.
I still eat red meat, but also have butter and lots of full fat yoghurt (so there goes the saturated fat poisoning ). Again felt better after I restarted them and pretty miserable without them .
I have not given up carbs either (lots of rice and various rice or wholewheat flat bread) but have largely given up vegetable seed oils
Possibly the only item I have introduced more recently is the addition of daily raw olive oil (20ml) after the MIND diet trials were published.
Do a bit of half hearted yoga and even less meditation and have a much ignored red light helmet that I should start using regularly.
On an upswing in the last 2 weeks and chuffed about it.
But defintely thin I should do mre meditation and more breath work
Thank you for sharing. I didnt grow up eating so healthy so just a bit of a challenge. I live alone so I eat at local health food shops and restaurants. I have cut out most dairy (boo!! LOVE cheese) in order to keep inflammation at bay. I do notice a huge difference in energy. And when I have energy I feel better and get outside more and exercise more.
I want to join a dance class in order to keep me accountable,
I take a handful of supplements which I will list when it’s not 3am with other modalities I use to keep me sane.
I need to have a balance body mind and spirit to feel “normal/happy” despite my symptoms.
I do reiki, sound healings, meditation (lacking) scripture reading and prayer to name a few.
It is a challenge to keep a routine going but one I must so I don’t lay down and die.
I fully agree with the needing to have a balanced mind and body. I think that my current sense of wellbeing is just because mine has improved
I ate a lot of junk between teenage to mid 25 but was good before that and after 35 I was eatng a lot better
Also find it challenging to stick to a routine and used to beat myself up about that but now feel a routine is not always the right thing always.
Forgiving myself when I neglect any of the activities that help me most has made me more compliant too.
Don’t be so hard in yourself. I did that as well. My kitchen cabinets are filled with sticky notes of affirmations I quote daily! One is, “I am not at war with my body. What I need is more grace and less weapons” I used to refer PD as a spoiled child, always demanding attention and when it’s not given it acts out. Or the “Monkey on my back” Either way it was negative and yet I carry it with me daily. So I had to change my view.
I now see it as my body crying out to me with symptoms telling me something isn’t right. So I address each symptom as best as I can and forgive myself when I feel I’ve failed.
Possibly not what you're after but this other post from today should be considered. healthunlocked.com/cure-par...
Ive been through this stage early on. I am now on the roller coaster of rabbit chasing vs staying balanced with a routine that works stage. But yes, making lemonade out of lemons is a lesson I learned as a child. #makinglemonadeoutoflemons#podcast#kathill
I understand. I am in my 14th year now and rapidly progressing. I have medication problems in that I can't take levodopa because it triggered dystonia in my right foot and causes tear jerking pain. I am taking Symmetrel aka amantadine and there are supply problems in Australia currently. Hope that will resolve soon.
It took me 2 years before the first thing I thought on waking was 'OMG I have parkinsons.' Now I dream of being able to walk properly and then become very disappointed when I climb out of bed. I am becoming increasingly dependent on walking sticks, walker. I am religious about exercise as I know it helps. I am currently in Bali with my husband who is a wonderful carer and a mad keen scuba diver. I can't dive anymore. Can't even snorkel because PD has robbed me of my ability to swim. I can kick like hell and go nowhere. But after diagnosis we have travelled extensively, making the most of life. I often get depressed and have self harm thoughts but I know I am going to struggle on regardless. Hey I recently discovered a positive thing. If you travel on airlines, they will provide you with a wheelchair, and help you so much that we now jump queues at airports with the help of a staff member.
Hobbies that you can do sitting down is great therapy, eg art.
I honestly believe that you lose a big part of yourself when you have parkinsons, and for that you have to grieve. I remember a fellow sufferer who said outright "I am not the person I used to be".
You are entitled to a rant so go ahead and do it when you need to. Nothing wrong with that. Take care.
I was diagnosed in 2014 at age 38. Now, 10 years in, I’ve had to hang up my travel gear. Meds only last 1 hour and I can’t find a decent brand of mucuna that I can take more than twice a day, that doesn’t make me sick. The issue is, my legs and feet have such a violent tremor and rigidity, I can’t sit while “off” without pain and discomfort. That leaves out airplanes, car rides, trains, etc. over two hours long (not to mention dinners at restaurants with friends). It’s really lame because I so dearly love to travel! I’m so sick of this disease and constantly being in the grieving process over and over again, every time I figure out something else that has been taken away by Parkinson’s.
I hear you. I am right here with you it is frustrating. Have you researched DBS? I am getting ready to, although I don’t want to do it. I will if it’s the last resort.
I had a dbs almost 3 years ago. For me it has been great move as my tremor is essentially in control. But pd relentlessly pursues you anyway.However dbs is not for everyone, either physically or mentally or both. Good luck to you either way.
thank you! I’m sorry you can’t enjoy what you used to! It sounds beautiful where you are! I love my view as well. I live in the Rocky Mountains of Colorado. I believe it keeps me alive. Meaning the beauty of Gods country. I will be moving soon to Illinois to be near my grandchildren. I have six there. I want to be near them but I will miss my Mountain View.
And please don’t harbor those thoughts of self harm. That will only add to your depression and more for your caregivers to worry about. There are lots of kool things you can do to help yourself out. It sounds like you’ve got a step ahead of most of us!! I LOVE the airport jargon lol hell I haven’t got up enough nerve to ask for a handicap sticker cuz I know the minute one person asks me why I need one it’s not gonna be pretty. 🫣😂
I have found that as my Parkinson's progresses I need more help. So eventually, I have had to swallow my pride and had to ask for and accept help graciously. I try to remind myself that hard as it is, there are a lot of people out there with far more serious problems. Reduce stress if you can. Don't sweat the small things. Stress only makes pd symptoms worse. If I am in unfamiliar territory. I freeze and really start to shuffle. The mind has to try to overcome these problems. Having Parkinson's is a daily struggle no doubt about that. But while I can still see a blue sky, it's OK.
what is stage 3 ie; what symptoms define stage 3
You can actually Google it. It’s easy information to find sorry but you would find clear concrete definitions other than mine. Don’t fret. Its progress is slow. enough there will be no surprises. Not the sound morbid or anything lol enjoy life like Alan Cole said I stopped wasting my time on things. I cannot change instead of paying attention to and honoring and celebrating the things that I have today. Paraphrase.
Your post is everything. My husband has Parkinson's and I research blogs, articles, emails, podcasts, webinars, forums, etc EVERY SINGLE DAY. If I see one thing that worked for somebody, I want him to try it. It gets overwhelming. Bless his heart. He is a good sport though and does most of what I ask him to try. I, like you, wish there was a book or a manual with tried and proven results. I pray everyday for a cure. Or at least something that will stop the disease in its tracks. I think that your comparison of Elon is perfect. I say all the time,,, I can't believe they put a man on the moon decades ago and can't find something to help Parkinson's.
Thank you! We need to use our voices! Its time for a change damnit!!
reading this has inspired me to take a PD break. I think I will start today and see how many days I can muster of NOT reading and researching PD.
You are so right! There are times when you have to give yourself an emotional and physical break searching for that seemingly elusive thing which may help to cope with parkinsons a little better, or even, heaven forbid a cure! After all it has only been 60 or so years since the development of levodopa meds. Pardon my sarcasm, but after 14 years of this ghastly disorder, surely medical science can do better.
Touche’
First thing to remember, “they” have deceived the world with the moon landings and all the “space” exploration. NASA gets millions of tax dollars a day to waste. If the government’s of the world would put this money into the cure of dreadful diseases like Parkinson’s disease we would have already had a cure.
I have lost my mother and recently my brother in law to this cruel disease and the wasteful spending just makes me so upset. I know you were just using an analogy about Elon musk but if people only knew the truth about what’s going on with the elites of our world we might be able to change some things. Of course I will be labeled and laughed at because of my beliefs but one day all will see. I pray you will be healed or if not you will find something to make your life better.
May Yahweh help you and bless you with wisdom and direction during this time in your life.
"Why is there not ONE SINGLE ANSWER!"
I think that there's not one single answer has been addressed often. If PD is not one disease then there's probably not one cure. Personally I was Dx'd four years ago. I have no idea what stage I'm at. Just never thought to ask that question of the neuros. But my symptoms are mild; Constipation and double vision is about it for me. No problems with motion, no problems with balance. Cognitive problems are a possibility but how does one diagnose such a thing?
Possibly another symptom is weight gain. I know weight loss is a bona fide symptom. In my case I think my brain is telling me to eat even though I'm not hungry. So I've started looking at food differently. Do I need that third sandwich...? Do I need cookies (desert) after every meal? I've always been a big eater. A lifetime of long-distance running had kept my weight in check but since the Dx I've curtailed running. I used to do 50 miles per week and now it's 10 miles per week.
With warmer weather I hope to increase the weekly mileage. I argued for years with the neuros over my Dx. But once the DAT scan became available and seeing the lack of contrast on the left substantia nigra MRI exam I'm convinced that I PROBABLY have PD. But I'm also convinced my 40-yr running habit is why I don't show more symptoms.
Getting back to the cognition concerns, I do crossword puzzles all day. I look for the most challenging types.
Dear GigiOf8, i was diagnosed in 2018 (being 66 years old). As a physician I was aware what this diagnosis mean. from a scientific standpoint there is no cure, but: Everybody has its own PD and the cause is complex. This is a logic combination because if there are a lot of causes they can create a different mixture in the individual patient that in the end leads to the symptoms of PD. Depending where the main cause/causes are, the development of the disease runs with different speed. This speed is also influenced by our approaches to slow down/stopp the progression. If we know our main causes we can do something against - in most cases. I talked to a german PD who is architect and who managed to stop/heal the disease after 4 years changing all his life and surrounding. He wrote a book about what he found out and what helped him. I did intense researches in pubmed and I tried everything that I thought could be a good idea. I started to change my diet immediately after diagnosis and since then I drink selery juice every morning which helps a lot for my digestion. I did not eat gluten and no dairy, no eggs and no meet. But after 2.5 years my Parkinson was still there. The I started to have my teeth completely restored. They found out that I had Palladium allergy which were in my wrong teeth and therefore I had the changed completely. Then I started to meditate daily for another 1.5 years according to Dr. Joe Dispenza. I know that the placebo effect can be very strong and so I hoped I can achieve it. Then I found quite a lot of studies on intense training that can help reducing the symptoms. To be able to do this I had surgery on my (now I have a TEP), because training did hurt a lot. My target is to be able to cycle on my home trainer for 1 hour. Currently I am able to cycle for 30 min. Every second day I do a sauna trip in the morning for 1 hour. I bought something that looks like a sleeping bag and can be heated. I like it very much because usually I have problems to sweat. There was a study done in Finland where they could show that the more people use the sauna the less they have Alzheimer. As Alzheimer is very close to PD I am convinced that sweating helps at least me. I like it because I can relax. Then I use the red light therapy every second day in the evening where they did a placebocontrolled trial showing the positive effect of the red light in PD. I take a lot of supplements, for example omega 3 from algae, Vitamin c in high doses, vit.D, vitamin B complex (incl. Vit B12), Zink (i have low plasma levels despite supplementing!), Magnesium, green tea extract, coenzyme Q10, Ashwaghanda and Hericium erinaceus. 3 weeks agoe I started intermittent fasting because I listened to a very interesting presentation of a neurologist from New Zealand. 16 hours no food, during the remaining 8 hours I can eat. I avoid pesticides whenever I can (eat bio vegetable), eat no meat, only sea fish, few dairy, no sugar. do not use parfumes, use no chemical cleansing. Summarising I will follow to do intense training (5 times a week), sweating every second day, using red light therapy every second day, taking supplements daily, drink selery juice every morning, do intermittent fasting (16:8) and try to find release from traumata. By doing this my tremor became less. I still live with the hope to be able to stop PD in particular because of the intense training, the sauna sweating and the intermittent fasting which I just started. I will update on any variation of my situation. and: I am not convinced that there will be a medicinal drug in the future to cure the disease. The disease is to complex to be managed with 1 pill. I think we only can follow the "trial and error" on an indivdual basis and listen to our body´s response to slow down or stopp the disease. In the best case: heal !!!!
I picked up a copy of John Pepper "Reverse Parkinson's Disease" ,a lot of great information and I'm finding a positive effect from the exercise program he does . Along with light helmet, laser therapy on gut and homemade vibratory gloves I made following pdbuzzboard website, I'm doing well. Keep positive and moving!
That was my first book!
I was dx 2019. I discovered daphne Bryan s book * parkinsons and B1 therapy'. It is not a cure, but I have not progressed in symptom s . I whole heartedly recommend it, a game changer. No need to suffer so much. Exercise is also crucial. Especially weight training twice a week. Best wishes
Thanks! I do some weight lifting as well. Need to be more consistent. I will read her book. Wasn’t going to because I heard some negative reviews. Thanks for your input!
I think for some people it is useful. For me I noticed no changes at all. When we are told that the disease behaves differently for everyone, I believe that is largely true.
Hi, I so hear myself in your post. I too felt frustrated and my first year was a s@## show. I think we all have to grieve and let go of our dreams for the future, until we come to grips with our new reality. A crazy ride. I have been diagnosed for 10 years and have tried a bunch of things. I am hoping for a breakthrough and yet trying to live my best life, in case there is no silver bullet. You have pointed out that we are all so unique, it’s not one size fits all. My only advice is to keep listening to yourself and tweak things to suit your own health. Best of luck to you. Cheers
Thank you ❤️ and ditto! Cheers 🥂
I understand your pain - this illness is really cruel and tough. I think the name 'Parkinson's' should be changed to something more accurate like 'MND' so that people who don't know much about it can understand it better. This might encourage governments to provide more funding and support. Instead of 'Parkinson's,' it could be called something like a 'progressive brain disease.' I know that covers a lot of different conditions, but at least it might help raise awareness. Sometimes, Parkinson's is only seen as an 'old man's shaky disease,' which doesn't quite fit for someone like me, a 58-year-old woman.
sorry a correction, what I meant to say was not like the actual disease MND, but in the abbreviation. possibly 'PBD' for progressive brain disease - just a suggestion
I like it! I feel inadequate to say “it starts with us!” Even though I am the human with the disease that has no cure. I am the one suffering on a daily basis spending every waking moment hoping and searching for an answer. I’m grateful to foundations like MJFox and Davis Phinney whom I love! But you’re right! It’s long time history has lost its relevance and looked upon as something not worthy of investing in. Like an old man shaking in his wheel chair. I mean, isn’t that just old age?? Do you really have to tag everything as a disease?? Come on!
Ive read and heard tons of comments like this one. The fact is it can hit you at any moment like it did me and all of the millions who live with it today, if it hasn’t already! I think for me stress played a huge part in my life. I believe as my body was shutting down the neurons in my brain wasn’t strong enough to survive to create the dopamine I need to keep moving. Depleting my serotonin from extreme high doses of cortisol over an extended period of time. On top of the toxins I grew up in and around.
So yes! I think you should carry that flag! I will be right there with you! A new “Awareness “ is what we need for sure!!
I totally agree with you. I believe my symptoms were very similar to yours. living in flight and fight mode for too many years, together with living and working on a farm with many different chemicals and renovating houses with mould, possibly I should have been diagnosed with adrenal fatigue syndrome but I didn’t do anything about it, thinking I could just tough it out, be strong and suck it in. Had only I understood the consequences maybe I could’ve nipped this in the bud, but unfortunately six years down the track is too late for that now. Stress on our bodies is so underrated.
I remember vaguely my Neurosurgeon whose is extremely biased on DBS, not me, said dead Neurons are dead. Meaning nothing can fix them and my interpretation was he also meant new ones cannot grow. But what I am seeing in studies say differently. And to be honest at this juncture I am spent chasing the rabbit. I need to live a little bit. Breathe the fresh mountain air and dig my toes in the sand.
Follow MBAnderson! He has a ton of research under his belt and seems to have a heart and pure common sense attitude to this disease. I like him a lot!!
my dad was recently dx and his symptoms are progressing rapidly. I wish I had answers, but just wanted to reach out and let you know that you’re not alone❤️🩹 I’m researching like crazy too and feel like I’m racing against time. Finding holistic modalities is difficult and my dad is stubborn. He doesn’t want to try anything because nothing has helped so far. Holistically, I got him a water bottle that infuses hydrogen and the abdominal belt from gladiator therapeutics that is showing promising early research results. There is also a chain of PT called Fyzical that do balance therapy called fighting the fall. What therapies have you found the most beneficial so far?
Parkinson's is many different similar diseases with different causes acting on different types of people with different reactions to medications and devices and supplements . The number of permutations and combinations could be huge.
there is no cure, no magic bullet , no one size fits all, no one to blame , no conspiracy , no hero , maybe no further advancement and this is the only life that we get, then all that is left is trying to make the best of what we’ve got and be happy.
Happiness is a state of mind and you can be happy if you have a mind to.
Be happy , this is a time sensitive offer , do it before it is too late , wasted days and wasted nights. If you are done demanding that somebody, somewhere do something then think about how much worse off people with PSP and other diseases are . They dont have a cure either but they also do not have a treatment and if you want something to worry about , you may not actually have PD. OK move your fingers together in front of your face now look up and look down. Sound familiar ? what are they looking for ?
Why are you even on here? Looking for cure as well? What are you searching so hard for? Oh, you’re the one who has all the answers. Got it! I believe I did mention there are also those with Nuero conditions other than PD whose research and trials are thrown by the way side as well. Sorry but your ways are not mine. I am not whining but will make my voice heard and be an active participant in changing the face of this ugly disease rather than sit on a high horse and act like you’ve arrived. Good for you! Now if you will excuse me I have a goal to pursue! And who said I’m not happy!?!? Im a kind joyful peace lover and Gigi of 8! Despite carrying this thing on my back, and trying to help my body heal or deal with it the best I can I choose to move forward in my progress despite what you or anyone thinks of me. You seem to be the one sitting in the corner, crying. I choose to be done with speaking with you. Please don’t contact me again.
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