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    • #18822
      Michel
      Participant

      Hi everyone,

      I am newly diagnosed and maybe very naive or optimistic but has anyone on this forum ever tried and succeeded to manage PD symptoms with only natural products, diet, exercise and meditation but without relying on pharmaceutical drugs? Thank you. Michel

    • #18831
      Barry Block
      Participant

      While I use a low dose Sinemet CR to control my PD, I also eat small bags of fava beans (The Good Bean on Amazon 50 cents per bag) between doses. I have done this for two years and it has helped keep me from increasing my dose. They taste good to, so they make a good snack while providing me a natural dose of dopamine.

    • #18832
      Andrew L.
      Participant

      I tried. Didn’t work. All of those things help and are worthwhile and even necessary adjuncts For a lot of reasons. but in the end it depends how much dopamine ur brain is producing. Over time the brain produces less not more so when the critical mass is reached  then we need some form of dopamine to replace what is lost. there really is no way around it other than dopamine or dbs barring s major scientific breakthrough. I hope U r the exception…Good luck!

    • #18835
      Lou Hevly
      Participant

      What Andrew L. said. If your body is producing enough dopamine, then you don’t have PD; if it isn’t, you do and you’ll have symptoms, which can be varying degrees of tolerable. In my case, it’s Restless Leg Symptom, which would be hell without Sinemet and Mirapexin. However, “when you’ve seen one case of PD, you’ve seen one case of PD”: you may be the exception! Good luck!

    • #18836
      Michel
      Participant

      Thank you all for taking the time to respond to my post, I very much appreciate it.
      <p style=”text-align: left;”>I like the fava beans so I will keep on with them, you can also find them in humus.</p>
      <p style=”text-align: left;”>It really looks like every situation is different which is also an encouragement to keep an open mind.

      As far as I’m concerned I am maximising exercise including yoga, Pilates, walking and cycling.  I have totally changed my diet and dropped all dairy products, fatty ingredients, sugar, alcohol and gluten.  I also have a dietician who has prescribed me several supplements.

      To be perfectly frank I’ve only been doing this for a few months so it’s early days. I will keep everyone informed if I come across any major breakthrough!</p>
      <p style=”text-align: left;”>
      Wishing you all the best.</p>

    • #18837
      Michel
      Participant

      Thank you all for taking the time to respond to my post, I very much appreciate it.
      <p style=”text-align: left;”>I like the fava beans so I will keep on with them, you can also find them in humus.</p>
      <p style=”text-align: left;”>It really looks like every situation is different which is also an encouragement to keep an open mind.</p>
      As far as I’m concerned I am maximising exercise including yoga, Pilates, walking and cycling.  I have totally changed my diet and dropped all dairy products, fatty ingredients, sugar, alcohol and gluten.  I also have a dietician who has prescribed me several supplements.

      To be perfectly frank I’ve only been doing this for a few months so it’s early days. I will keep everyone informed if I come across any major breakthrough!
      <p style=”text-align: left;”>Wishing you all the best.</p>

    • #18834
      Gail Dons
      Participant

      Agree with Andrew. It depends so much on how much functional substantial nigra you have and how slowly it deteriorates.  Exercise, diet, and natural supplements may help. I did not immediately start on levodopa when I was diagnosed. Eventually I found out that I functioned more consistently with a small dose. (I could exercise more safely and didn’t trip and fall on my face!) Seven years later, I have made some modifications, but I am still on that low dose…with those good diet and exercise habits!

    • #18846
      Joel
      Participant

      Hi, Michel. I’m sorry to hear of your diagnosis, but congratulations on making such powerful lifestyle changes. As noted, PD is an area where modern pharmaceuticals have earned their keep, but it also seems clear there is much that can be done to lessen/delay the need for them.

      You have a good list, and reading between the lines you probably already know about the importance of probiotics, lessened protein intake, and anything that reduces (brain) inflammation. And, if they aren’t already on your supplement list, B12 and Lion’s Mane are worth looking into.

      On the gadgety side, a 40-Hz strobe light (https://news.mit.edu/2019/why-visual-stimulation-alzheimers-0507 … It’s about Alzheier’s, but it seems to help with amyloid plaque, which may have PD implications) and infrared/red light exposure (https://www.liebertpub.com/doi/full/10.1089/photob.2019.4663 … presumably it helps a little with brain inflammation) might be worth a web search.

      There is a traditional Indian food or food ingredient that I read about, maybe through this site, that was used there back in the day for PD symptoms, but I did not save the reference as it would not be of benefit to my uncle’s very advanced PD. If you can dig that up, it wouldn’t hurt, and it might taste good too.

      Good luck,

      Joel

      • #18855
        Michel
        Participant

        Thank you very much Gail, this is very encouraging. I believe that, although science may one day find the silver bullet, in the meantime a systematic approach can be succcesful. Your experience definitely seems to support that view.  Thanks again for your input.

    • #18853
      amy
      Participant

      Hi Michel,

      I’ve had PD for five years now and still don’t need dopamine. My symptoms remain mild and one-sided. I DO take Azilect, 1mg/day, on the theory that it might be a little neuroprotective. I also take pterostilbene, reishi mushroom, baicalin, and omega 3’s.

      I exercise, pretty faithfully (although covid has impacted that a LOT by closing my gym!) But the thing I believe has made the most difference is my diet, which is pretty strict. I eat therapeutic keto–that is, very high fat low carb. I also fast, intermittently every day and longer from time to time.

      IMO treating PD is all about keeping mitochondria as healthy as possible–getting them off glucose, increasing autophagy as much as possible.

      I don’t think it’ a cure. But I do think I have slowed my progression to a crawl. Though I am only a sample of one!

    • #18857
      Michel
      Participant

      Hi Amy.
      Thank you very much for your post.  I am really encouraged by your experience.
      I have now come across the idea of fasting on several occasions and will definitely look into this.
      in the meantime my diet is gluten, sugar, dairy, red meat and alcohol free. I consume proteins from poultry and eat oily fish… I miss a good beer or wine especially on Friday nights but found it easier to go totally off alcohol.
      Would love to stay in touch with all those who kindly responded to my post and are focusing on “soft medicine “ in addition to pharmaceuticals.
      Good weekend to all.
      Michel

    • #18848
      Russ Hudson
      Participant
    • #18858
      amy
      Participant

      Forgot to add one supplement, which is magnesium. I think it helps with cramps, and possibly restless leg type stuff.

      But here is something else: I actually think it would hard to imagine avoiding dopamine replacement forever, for you or me or anyone…and I don’t care how well we take care of ourselves. Plenty of folks avoid gluten, or don’t eat dairy, or eat balanced diets or vegan or whatnot, in this quest. Even keto, which is probably more unusual because it frightens people…I couldn’t be the only one!

      I think (someone out there want to disagree?) that if there was any self-care CURE out in the world it would be common knowledge by now. On the other hand, maybe you will figure one out? :o)

    • #18856
      Michel
      Participant

      Hi Joel,

      Thank you for your response, encouragements and suggestions.  You are perfectly right to mention inflammation and I am approaching this issue via supplements (turmeric, omega 3) and generally by reducing my stress levels via several types of meditation (inc. qigong, autogenics ets) as adrenaline is the enemy.
      There is a Chinese herb I wanted to mention here in case anyone is interested or has experience with it. It’s called gou teng and although I have bought some in the US I must confess that I haven’t used it yet. I am joining an article from the New Scientist that tells you all about it.
      https://www.newscientist.com/article/dn20584-chinese-medicine-offers-new-parkinsons-treatments/

      I hadn’t heard about Lion’s mane so I will have a look. Thank you also for the suggestions on light therapy.
      Wishing you all the best.

    • #18883
      Andrew L.
      Participant

      For the record, I have been on Lion’s Mane, Magnesium, probiotics and many other supplements I researched and am on a strict diet since diagnosed a few years ago. I exercise like a maniac (for me), and am on an uber healthy diet. As a result,  I am actually in the best overall physical shape of my adult life, and my labs have never looked better (except for the low uric acid.) Am on relatively small dose of  Carbi/Levo, but need it around the clock.  Have been doing the intensive light/sound therapy for about a year now, and hour a day. If anyone is interested , I can tell you how to go about it.  Do it while on lifecycle and doing cognitive work , all simultaneously. Feel it has helped my cognition.  Have been on drugs initially thought to be neuroprotective (there are none), but in the end had failed studies. Azilect, selegiline, isradipine. Now on latter to, isradipine very low dose. Feel I have one of the best docs in the world when it comes to research and knowledge, and he calls a lot of these pseudo scientific cures “medical tourism:.  And yet, with all that…feel disease is slowly progressing, and I certainly can’t function without the dopamine. It is what it is, taking it one day at a time. I guess we all progress at different rates, and I agree with comment above, if there was a silver bullet we already would be on it.

    • #18886
      Andrew L.
      Participant

      Meant to say latter two, not to. Now off to virtual boxing class, haha.

    • #18907
      Bob Hodgson
      Participant

      Ditto on most of the previous posts. I was diagnosed a little over five years ago. I waited 18 months after diagnosis to start on a low dosage of carbidopa-levodopa. Actually I wish I hadn’t waited so long. I have modified my diet to limit carbs and sugars, I take around 24 different supplements and I take mucuna pruriens with my medication. All of that in my opinion has slowed down the progression of the disease. I have found that the best form of treatment has been running (you can substitute any form of high intensity exercise). For some reason I didn’t start running until three years into this journey. I was always very active pre-diagnosis so I was ready to exercise. I constantly get comments from friends that they can’t believe how well I’m doing.

    • #18910
      Jean Mellano
      Participant

      hi michel,  i was diagnosed in 2015 and have struggled with the idea of having to take prescription medications.  I am a firm believer that  for me, diet and exercise are key in slowing progression and alleviating symptoms. however, to get me to the point where I can exercise, i feel i do need some carbidopa/levodopa and reluctantly take it.  perhaps you might like to read some of my articles related to this  topic:

      https://parkinsonsnewstoday.com/2018/07/03/balancing-parkinsons-medications-risks-benefits/

      https://parkinsonsnewstoday.com/2018/06/05/parkinsons-struggles-worsening-despite-best-efforts/

      https://parkinsonsnewstoday.com/2018/10/16/parkinsons-finding-balance-medications/

      https://parkinsonsnewstoday.com/2019/12/03/plant-based-diets-dairy-products-healthy-eating/

      My next article that will publish on 7/7 talks about allopathy vs. naturopathy

       

      good luck to you.  I  am sure your realize by now, what works for some does not work for others and we must chart our own courses

    • #18914
      Cap Sage
      Participant

      It looks as if you have enough suggestions to keep you busy for awhile! Thanks to all who replied.

      I also now take Sinemet 3x/day 50/200 Carbidopa/Levodopa, but I dealt with PD over 5 years before going onto any medication.  The whole story would be a book, but I also have used and tried many natural remedies, many of which I still take or use. Similar to those you and others mentioned, I do and monitor with stats:  calisthenics, walk, jog, practice “burst exercises” in the form of working out on a big (boxing) bag, HBOT, Qi Gong, Scientology Nerve Assist, gag reflex, tandem balance, dexterity exercises, and many others. I also did adipose (using my own cells) stem cell treatment in 2017. Supplements added as researched individually: All basic vitamins,  minerals, MSM-Glucosamine-Condroitin, Curcumin, Omega-3, Coconut oil, (no caffeine, gluten, dairy, minimal sweets & grains) and I take ASEA redox supplement, L-Serine, Passion flower, mega-B1, B5, B3 (niacin, not niacinimide), B12, Magnesium, L-tryptophan, Valerian root, mucuna pruriens, garlic, DLPA, N-Acetyl L-tyrosine, CoQ10, Potassium, Ginko Biloba, Reishi, Ashwagandha, Ginseng, Black Cumin Seed oil, L-Arginine, melatonin, N-Acetyl L-cysteine, Alpha-lipoic Acid & Acetyl L-Carnitine, and some I’ve testing omitting right now (glutathione, B6, B-complex, et al). Beware of excess vitamin B6: too much can damage nerves…permanently!

      I wish you the very best future, and maybe the answer to curing PD will be found by groups of those, such as ourselves, not waiting on the medicos to come up with a cure they can patent.

      Best Regards,

      Cap

    • #18918
      Robert
      Participant

      Hi Michel

      You illustrate the need for this forum.

      Because this PD is so different for everyone, we each, eventually, must decide on a course of treatment or accommodation or whatever word we use to get on with our lives.  We all have different treatments that we try until we settle on one for a while and then make changes as needed along the way.  It is very helpful to see how others do while following their particular treatments and choices.  We do appreciate all the sharing of individual treatment successes and failures and adjustments.  It helps the rest of us make good decisions and choices on our PD journey.

      Very good question for discussion.

      Best of luck to you on your PD journey.

      Robert C

    • #18922
      Daniel Best
      Participant

      Hi Amy,  thank you for your post as I think many of us newly diagnosed strive to follow your example.  I’ve added a couple of supplements to my list thanks to your post.  One interesting thing to me is your use of Azilect in the hopes it slows progression.  My neurologist has suggested I start with Azilect and nothing else.  Folks on other forums claimed that taken alone it did nothing for them.  I have 2 questions for you…1)do you think it is actually helping reduce your symptoms?  2)Are you experiencing side effects?  The latter is the main thing holding me back, although the price of the drug does appear to be high.  Thank you!  Dan

    • #18932
      Michel
      Participant

      Hi everyone

      I want to thank you for all the additional contributions that I only discovered today (I have been missing a few recently, please accept my apologies for the radio silence). I have just attended a PD Tutorial by two senior nutritionists who advocate an integrated approach to the disease. Interestingly one of their key focus points is cell energy.  For whatever it’s worth I am planning to try to stay away from L-dopa until I really need it. If/when I do, I will aim to start with a minimum efficient dose of natural L-Dopa. In the meantime I will keep on focusing on my diet (it is pretty scientific and rigourous nowadays), exercising (walking, yoga and Pilates mainly) and meditation (including qigong and autogenics).  There have also been many interesting recommendations through this forum that I will investigate over time.

      PD is still a recent journey for me and I will give updates to everyone if there is anything worth reporting.

      In the meantime I would like to thank everyone once more for being so helpful in responding to my enquiry.

      Wishing all the best to everyone.  Michel

       

    • #18936
      Carolyn Huggett
      Participant

      Hi,  I have recently been diagnosed with Parkinsons/MSA and have been treated with acupuncture, preferring not to take the prescribed levadopa. When symptoms are worse I go every week but usually I can keep it stable with a visit every two weeks. I have tried levadopa but found the acupuncture worked better. Obviously it depends on the acupuncturist’s knowledge. Things got a bit tricky with the lockdown  and that is when i went on the levadopa because i couldn’t get to my acupuncturist.  Carolyn

    • #18935
      amy
      Participant

      Hi Michel,

      Re Azilect: I wish I could answer that! I don’t THINK it does anything for my symptoms, at least not much, but I can’t be certain because my symptoms are very mild…and as I said I take supplements and eat a crazy diet. Who knows what does what?

      The one thing I can say is as far as I am concerned it has zero side effects. And that includes eating all the aged cheese and home-fermented sauerkraut and kimchi I can (I love that stuff:o)

    • #18944
      Kam
      Participant

      Michel,

      I’ve been reading your posts with interest — I was diagnosed almost a year ago and now trying to catch up more with the holistic stuff.  I had a period of feeling decent, but bit by bit, it has crept up on me and now I’m on levodopa. I got the flu in March and I guess it caused a chain reaction of inflammation because I then had to double the levo, argh. Anyway, not to blurt out my recent life story for your enjoyment :), but somewhere in your posts I think you mentioned perhaps a group of us staying in touch via the forum as we explore options.  I would find it helpful to check in and feel a bit accountable too. Maybe we can try something like that? It would be helpful and supportive, I’m sure.

      My holistic list I’ve tried so far: exercise, of course, very helpful, not immediately after but I think the next day; butyric acid: can’t tell if it helps. I also take but can’t tell if they help, methylated B vitamins, glutathione, fish oil, and a probiotic.  and I also just bought an e-book called The Parkinsons Protocol — it was expensive and I’m hoping not a rip-off, but it gives me some hope and talks about things like fasting, etc.  Sorry for the rather meandering rundown, which probably wasn’t helpful. But I did want to chime in and see if we can all learn from each other on this lovely (!) journey and also offer you support and well wishes.

    • #18955
      Michel
      Participant

      Hi Carolyn,

      It is interesting to look at acupuncture as a one of at least three approaches to meridians in traditional Chinese medicine (I’m still relatively new to this!). The recent events have made it more difficult to utilise acupuncture. Similarly, acupressure is something I would like to try but it’s a tiny bit off-limits right now.  The third approach is qigong healing and I’m lucky to have found a qigong master in the UK who helps me from that angle. I am personally also using qigong as meditation, which is easier than tai chi.

      Michel

    • #18956
      Michel
      Participant

      Hi Kam

      Thank you very much for your message.

      My post has indeed triggered some interest from similarly minded people who consider non-pharmaceutical options as critical to our well-being. To be clear, I am not anti pharmaceutical drugs at all, but would like to delay taking them as much as possible and, if I have to take them, make sure that they are not the only solution but are part of a wider, integrated approach.  Hopefully, with such an integrated approach, doses of pharmaceutical drugs can be minimised and can be extended over time as much as possible.

      I will reach out to the moderators and see what are the best options to stay in touch as a group on this topic.

      All the best

      Michel

    • #18958
      Kam
      Participant

      Thank you, Michel! I agree with your stance: I am not against drugs, but my goal too is minimizing their use or using them as part of a larger strategy.

      Thank you so much for checking with the moderators. It would be lovely to be part of a sub-group/community as we deal with all this. 🙂

       

    • #18960
      Andrew L.
      Participant

      Hi all: Will stick my two cents in …

      I totally understand the strong desire to avoid pharmaceutical dopamine replacement for PD  (I think this is part of the “denial” stage we all go through), but the medical studies do not support this as an effective form of treatment. It has been said you won’t die from Parkinson’s but with it. Dopamine replacement therapy is what allows us the ability to live the healthy lifestyle we need so we can still be productive and don’t die or get debilitated from something else before our time. By taking the meds, many of  us can effectively live productive lives, including doing things like exercise, which is necessary to maintain a normal cardiovascular system, bone density, better sleep ,mood, cognition etc. etc. By not taking the meds,  I am of the opinion that we are effectively diminishing the quality of our lives as well as diminishing our overall health and well being and ultimately our lifespan, because of the things we can’t or won’t do when we are chronically dopamine depleted. I think it is important for us collectively not to be our own doctors, but to seek out qualified medical opinions before acting on alternative treatments, so we DO NO HARM to ourselves.

    • #18965
      Kam
      Participant

      Andrew, I think you are making some great points here. I don’t disagree with you; more I just want a multi pronged approach. I had a holistic doctor actually encouraged me to go on carbidopa levodopa because just like you said she said it would allow me to exercise which would ultimately help. Right now I feel like I’m on a little too much but that’s beside the point. Thank you. I think you made some very valid points and also you’re making me feel better about being on medication LOL.

    • #18964
      Mark Summer
      Participant

      Barry, I looked on Amazon and could not find the favs bean you mentioned. Could you possibly give some additional info…brand, Amazon sku, pic? Thanks. Mark S.

    • #18967
      Russ Hudson
      Participant

      I had all the symptoms of Parkinson’s; acting out dreams while sleeping, left thumb twitch, difficulty writing, left leg stiffness, brain fog, unsure gait, balance problems, soft speaking voice. I went on Google and entered the following search, “latest treatment for Parkinson’s.” One of the pages I found is shown below.

      Bottom line? Butyric Acid supplements not only cured my Parkinson’s but reversed it’s progress.

      The Potential of Butyric Acid as an Alternative Treatment for Parkinson’s Disease

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