I'm Weng , 57, from Singapore. Last year, I was told by my neurologist that I have PD. The news came when I was about to retire. My goal is stay off medication and continue living a normal life. I have made a lot of lifestyle change since that fateful day. Things I do to help myself: brisk walk, yoga,, qigong, meditation, supplement, red light therapy, keto diet and fasting. And I will be taking high dosage of B1 next. I am literally working on myself full time. But luckily, my wife and four children are also very helpful towards my quest for a better health.
If there is anyone out there who is veteran in dealing with this condition for more than 10 years and is still able to stay off medication, can you kindly share your secret?
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My tremor and other symptoms showed up in 2009. I don't take any PD drugs, primarily because they don't work for me.
It looks as tho you are doing everything right. You might want to add weight lifting.
A robust nondrug regimen consist of 30 minutes of strenuous, aerobic exercise (if possible at 80% of your capacity) at least 5 days/week, testing for and correcting nutritional deficiencies, intermittent fasting, weight & strength training, balance & flexibility exercises, red light therapy, sleep hygiene, social engagement, stress management, learning new things, supplements, and perhaps things like dancing, tai chi, Qigong, sports, yoga, acupuncture, massage, etc.
Most of us cannot exercise for 30 minutes at 80% of our capacity, but we need to do as much as possible.
Here are 4 truths;
1. There are no doctors or health gurus who get everything right.
2. There are conflicting data on every diet, issue, drug, & supplement.
3. Out of thousands of drugs tested in vivo, in vitro, in mice, fruit flies, worms or in all other animals and people over the past 55 years, not one has proved disease modifying, i.e., helps even a little bit. (I conclude from that, that the drug companies doing the research don't yet understand PD.)
4. We are all different and therefore what works for one person will not work for everyone. That means we all must go through a lot of trial and error to find the best regimen, diet, & supplements that work for ourselves.
Thanks for the generous sharing. Which rituals would you consider most important? Are you on any special diet? What supplement are you taking now? Thanks again.
Sleep, exercise, diet, intermittent fasting - in that order.
I used to fast until 2 or 3 PM. Now, I fast the last half of the day (no food after 1 or 2 PM) because when I leave time for my blood sugar to return/drop, I sleep better.
The supplements I take are listed on the last page under my profile, (wherein I bloviate) altho I am constantly tweaking the list. In addition to that list, I take Omega-3, Berberine, TUDCA, Lion's Mane, Creatine, and psyllium fiber husk.
My diet switches between Keto, a couple months at a time, and low-ish carb Mediterranean, most of the time.
What u shared with me here all aligned with my belief and research. I believe fasting is one of the most effective tools under our disposal to heal the mitochrondria. What I learned from Dr Matthew Phillips's interview is that PD patients need to fix their mitochondria, which is the battery for our brain cells. With too much faulty mitochondria swimming around, the brain just can't get enough energy to power itself. As there is a brain-blood-barrier, we can't easily transport the energy needed to the brain too. Ketone therefore becomes an alternate yet more superior source of energy. It's 28% more efficient than glucose. Both fasting and keto diet helped release ketone. But Dr Phillip calls fasting the Batman and keto diet the Robin. Of cos, exercises that bring up the heart rate is also key. John Pepper promotes an hour of brisk walk 3 times a week, while you endorse a regimen consist of 30 minutes of strenuous exercise at least 5 days/week. What I learned about winning against PD is that it requires almost a full time effort.
hi! I am 40; diagnosed at 28. On meds but happy to share my pearls of wisdom. Best wishes. This disease will take a lot but will give you a unique perspective to appreciate little joys of life
Hi MBAnderson writes much truth but I'd suggest you slowly take on the parts of the advice offered and don't panic or stress i.e make time to relax too.
I would add to what mbanderson writes don’t give up things that are getting hard. Double down on reclaiming lost function. Look where your weaknesses are and work on regaining strength in those areas even if it isn’t enjoyable. Eg if you struggle with your hands work on those, or if legs, work on those.
Practice making everything bigger. Your voice, your movements your writing. Always keep moving.,
Keep control of any constipation by reducing meat and dairy and adding lots of beans, lentils and chickpeas etc.
keep big stress down but don’t allow yourself to get out of doing one thing after another . Use it or lose it.
Dear LAJ12345, thank you for your kind reminders. Yes, I'm 100% off meat and 90% off diary. I am on a low carb keto vegetarian diets on most of the days. Being a vegetarian isnt so hard. I've been doing it for the past 30 years. But keto is a totally different animal. I meditate 2-3 hours a day to ensure that I don't overthink. Thank u once again.
you're doing an amazing job. 1 year after diagnosis, no meds, but working with an integrative dr. now and starting qi gong. Lots of supplements. Slowness and drop foot make high intensity workout difficult although do strength training at a gym. Can you actually tell if the red light is making a difference?
Sounds like you are doing an amazing job of managing your symptoms by yourself. I'm not so lucky and nor do I believe that "we are all different".
If I hear that i have a malady which causes my brain to stop producing dopamine, and I notice the effects, I don't start thinking "we are all different". I start wondering how I can replace it! To prevent those symptom from recurring. Then hopefully I'll stop falling over quite so much.
Thanks for your message. To be honest, I' scared of the side effects that come with Sinemet. You may google it. Furthermore, it doesnt stop the progression but offering temp relief for some which the advantages will wear out. Then I would be left with dealing both PD and Sinemet's side effects.
Ôh then I suppose I àm lucky. No one discussed the. side effects with me. I just got on with benefiting from the actual effects of the drug. I never noticed any side effects
I did check him up. In fact, I have made a short summary in my journal:
In the past, it was commonly believed that patients with Parkinson's disease (PD) lacked dopamine in their brains. This led to the development of Sinemet, a medication that aimed to increase dopamine levels. However, there is now a different perspective emerging.
Recently, I came across a video featuring Dr. Jonathon Sackner-Bernstein, who has made an interesting discovery regarding dopamine levels in PD patients. According to Dr. Sackner-Bernstein, the brain cells (specifically, the dopaminergic neurons) of PD patients are actually exposed to excessive dopamine levels, which can reach toxic levels. This challenges the previous notion that PD patients lack dopamine in their brains.
The excessive dopamine in PD patients can lead to dopamine toxicity, which in turn contributes to mitochondrial dysfunction. To put it simply, mitochondria can be thought of as the "batteries" that power brain cells. When dopamine levels are too high, it can disrupt the function of these mitochondria.
In light of these findings, Dr. Sackner-Bernstein has identified a drug that aims to reverse the disease pathology by reducing dopamine levels. This represents a shift in the way we understand and approach the treatment of Parkinson's disease.
All that talk and no results whatsoever?? Just because no one will profit from all these pd sufferers suddenly getting better?
His potential solution is so revolutionary that surely something must have been figured out by now? I wonder why so many of his contacts think he is, as he puts it, "nuts"?
He seems to have lots of theories and no solutions? How come MJFF wont respond? What did the PDRX show? MJFFF isnt normally motivated by there being no ROI.
It's only been 6 years since I was diagnosed with PD but I am not on medications and am doing better today than when I was first diagnosed. When I was diagnosed the neurologist told me that there were no medications that would help the type of tremors that I have (head tremors) and my only option was deep rain stimulation. I said no thankyou and have not been to a neurologist since.
I began doing my own research and trying to figure out why me? There was no family history and I had pretty low exposure to chemicals, or so I thought. Then I came across an article about the dangers of amalgam fillings and realized that may be my cause. I had at least 6 and had had them for over 30 years. With in 3 months I had all of my silver fillings removed and within a month after that I was no longer experiencing what I referred to as brain fog. My handwriting was normal size again and I had begun swinging my arms again when I walk.
I still have head tremors despite trying many supplements. I have discovered that taurine prevents the nighttime muscle cramps. Those are really my only symptoms at this time and the have not gotten worse.
I have done a crown during the Covid period. Though I am not sure what material was used, but I am sure it requires some sort of metal in the inside. I read that most material used for crown is titanium. Is it as dangerous too?
I assume titanium is safe since it is commonly used for dental implants. I know here in the states some crowns have amalgam in them. It is the mercury that is dangerous.
Welcome to the group. You should join us on the Zoom calls MBAnderson is so nice to host. Lots of nice people with lots of experience on these calls. You woould be the second person from Singapore on the call!
I am ten years in and following the idea of the gut connection to Parkinson’s disease as a starting point. So I’m tackling the sympathetic and parasympathetic and lymphatic systems. There are plenty of videos out there on how to move all three systems to clean them out. But I found the easiest to follow is a chiropractor by the name of Perry Nickelston. Here’s one of his videos, but it’s well worth watching more of his.
Also I do his ‘Big Six’ every day. Sometimes twice. Takes very little time (3 minutes) and has noticeable changes immediately because you’re starting with a system that’s carrying old bacteria throughout your body including your brain! He explains it very clearly how illnesses start from this backed up system full of a lifetime of stress and physical demands. Anyway just a thought. Here is the big six video.
Side note: there is a concern for people with high blood pressure doing the big six.
Also in the first few days or a week if you find you are feeling slightly unwell that’s more than likely an indication that your body is cleansing but definitely slow down to every other day until you find it levels out.
I agree with your to pay attention to the gut connection. I'm thinking of doing a microbiome analysis. As for the two videos, I've watched them. I would start trying out the Big Six. Thank you for the info.
I have had PD since 1992. By 1996 I had completely overcome all my PD symptoms by walking as fast as I could, for a maximum of one hour, every second day.
At the beginning, I was unable to walk fast for much more than a few minutes but, within a year, I was completely free of all my PD movement symptoms. It cost me nothing.
I had taken every PD med before I started the walking. There is not PD med on the market that reverses PD movement symptoms so, don't waste your time and your money.
I am so happy to hear from you. Yes, I have incorporated the 1 hr of brisk walking routine into my schedule. I have included a few segments of a-minute jog in between my walk to bring up my heart rate. By the way, do you lean towards a keto, vegetarian, or any special diet?
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